Life has finally calmed down and my days of driving back and forth to the hospital for various appointments has reduced drastically - thank God. My visits are now once every three weeks for Herceptin with the odd ECG and Oncologist appointment thrown in just to keep me on my toes.
This week Alec went back to College and is now in his final year and my "baby" started senior school. The school run, which have dominated my days for the past 10 years, are a thing of the past and I now find myself with plenty of time on my hands. I will miss standing at the school gates having a natter with my friends but, as these are the ladies who have been by my side during the ups and downs of this annus horribilus, we won't be losing touch - they can't get rid of me that easily!
And so, I finally find I have the time to update you all on what has been happening since April - blimey, was it really that long ago - time sure does fly when you are having fun....
When I left you I had two more doses of EC chemo remaining. I am happy to report that I tolerated EC far better than the awful Mr Taxol. The main side effect was a constant feeling of nausea, only relieved by eating - hence I gained nearly two stone during my treatment. There were times when I worried that my lack of severe side effects with this regime meant the chemo wasn't working. There were also many times that I panicked that by choosing the neo-adjuntvant treatment ie. chemo first, that I had made the wrong decision. Each time these worries took over, Alan had to calm me down and reassure me that I had made the right decision based on the facts and advice we were given at the time of diagnosis. Part of me also believed that Hannah would have been able to handle everything a lot better if the offending breast had been removed at the start of treatment, rather than being left to hang around like the spectre at the feast.
My last dose of EC was scheduled for a few days before Alec's 18th birthday, for which we were planning a family "do. Despite the fact that I have a very good friend, Alison (Ali-Makes-Cakes), who is an expert in this field and in high demand, Hannah insisted we do it ourselves. When I told Alison about the cake Hannah had planned, she saw the look of sheer panic on my face and very kindly offered to help out. The result was a wonderful concoction of chocolate cake decorated with Cadburys fingers and large chocolate buttons, Alec, a secret chocoholic, loved it. I asked my Onc if it would be possible to delay my treatment until the Monday after his Birthday as I didn't want to spend the day with my head over a bucket. The main side effect I had with EC was a constant feeling of nausea and I wanted to enjoy Alec's coming of age. The only reason I would be unwell would be if I had over indulged during the celebrations! Thankfully, my Onc agreed with me and happily arranged for me to have treatment
From the very start of this it was always made clear to me that, due to the size of my "lump" and the way it presented itself, I would need a mastectomy followed by radiotherapy.
Alan has lost most of the weight he put on during my treatment (comfort eating was his way of dealing with it all) and I lost a breast - careless, I know but I've had the house upside down, searched down the back of the sofas and its definitely gone.
Thursday 6 September 2012
Sunday 10 June 2012
Remember me?
Not an awful lot has happened since my last entry, hence why it has taken so long for me to put fingers to keyboard. I asked my Onc to delay my last chemo for one week so that I would be able to celebrate my son, Alec's 18th Birthday and she very kindly agreed. So, I was given my last chemo on 30th April, I had imagined that I would feel a sense of relief about that part of the treatment being over. However, as the weeks have gone I have gone from feeling relieved to concerned. Although I have restarted on Herceptin, you can't help fearing that the Git has snuck under the radar and moved on to invade another party of my body.
Two weeks ago I had another mammogram and ultrasound, these showed that the chemo has done a bloody brilliant job in reducing the size of the mass in my breast. The Sonographer (or "scan lady" as I was calling her until I googled her proper title) said that the mass was so small now that it was hardly visible on the ultrasound. I have to hope, therefore, that the chemo and the Herceptin stopped it in its tracks and prevented it from escaping, although the knowledge that it is in my nodes plays on my mind continually with every little ache and pain causing me to have cold sweats and nightmares. The most recent of these panic attacks took place last week. Over Jubliee weekend a small lump appeared under my armpit followed by a second the next day. Obviously, being an extended Bank Holiday, it meant I had to wait until Tuesday before I could get to my Drs. I had already been feeling very low for about a week, crying for no particular reason, shaking internally and having bad dreams - these lumps did not improve my mood. On Tuesday morning I called the Drs surgery to be told they were running an emergencies only clinic. I explained my situation and was told to come in, give my name and wait my turn. I arrived about 10.00am and, after checking in at reception I went through to the waiting room. I noticed that although the room was packed to the rafters, there was a row of empty seats by the door. I sat down, got out my kindle and prepared to wait for "up to two hours". About five minutes later I was almost kicked in the shin by the littlesod angel lying on the floor in front of me - I now knew why these seats were empty. He was the proverbial pain in the butt! Aged about 4 years, he was bored rigid having been there since 9.30 with his nan and older siblings. No one had thought to take a toy for him so he spent his time winding up his sister, whingeing, crying and throwing himself around the waiting room.
Two weeks ago I had another mammogram and ultrasound, these showed that the chemo has done a bloody brilliant job in reducing the size of the mass in my breast. The Sonographer (or "scan lady" as I was calling her until I googled her proper title) said that the mass was so small now that it was hardly visible on the ultrasound. I have to hope, therefore, that the chemo and the Herceptin stopped it in its tracks and prevented it from escaping, although the knowledge that it is in my nodes plays on my mind continually with every little ache and pain causing me to have cold sweats and nightmares. The most recent of these panic attacks took place last week. Over Jubliee weekend a small lump appeared under my armpit followed by a second the next day. Obviously, being an extended Bank Holiday, it meant I had to wait until Tuesday before I could get to my Drs. I had already been feeling very low for about a week, crying for no particular reason, shaking internally and having bad dreams - these lumps did not improve my mood. On Tuesday morning I called the Drs surgery to be told they were running an emergencies only clinic. I explained my situation and was told to come in, give my name and wait my turn. I arrived about 10.00am and, after checking in at reception I went through to the waiting room. I noticed that although the room was packed to the rafters, there was a row of empty seats by the door. I sat down, got out my kindle and prepared to wait for "up to two hours". About five minutes later I was almost kicked in the shin by the little
Tuesday 3 April 2012
YOU'RE GOING TO HAVE A NUMB BUM AFTER READING THIS ONE.....!
Sorry for not posting earlier but I have been too busy enjoying myself - yes, you read that right, I have been ENJOYING myself!!! After 3 months of feeling like something the cat brought in, played with, ate then threw up - I am finally feeling like me again - if I was still able to cartwheel I would..... Finally, my Taxol days are behind me and gradually all the nasty SEs are receding. The feeling is coming back in my toes and feet, the rash on my face is going and – at last – my stomach and chest are not feeling so swollen and painful. I no longer feel as though I have an elephant on my chest. However, I am getting ahead of myself so grab a coffee and a snack, you will need it to get through this lot and here goes;
Each March for the last four years I have organised a "Mums Wot Lunch" day out. The numbers have grown over the years and there are now about 25 of us going up to London for the day to shop, lunch, gossip and see a show. I booked this year’s show back in September when I was, to my knowledge, as “fit as a fiddle” – when, actually, all the while The Git had been doing its thing and turning my cells against me – the bugger.
I gave the group too many shows to choose from this year. In the end 5 went to see Blood Brothers and came back raving about the show and their good seats, but minus their mascara…… The rest of us saw Dreamboats and Petticoats - a brilliant show with a very young and enthusiastic cast. We had front row seats and felt like we were part of the show. Mum had been whisked back to her early teens and knew all the songs so sang her way through show. At the end the cast come out and performed another couple of tracks, they ask you to get up and dance as they know you have been wanting to do that all along. I am the sort of person who normally waits until everyone else is up before I join in but, I was enjoying myself so much that I thought “sod it”, grabbed Mum and said “come on”. The rest of our group was soon up too (apart from Kate and Trina who refused point blank – mind you, the trombonist noticed their lack of bopping so gave them a close up and personal demonstration of his instrument!!! – that’ll learn em).
After the show I had made reservations for dinner at The Strand Palace Hotel carvery. They kindly gave us tables in an alcove on one side of the restaurant, so we were able to make as much noise as we wanted without disturbing the other diners. The starters section is a fish /seafood lovers delight and most of us ate more of that then our main courses – oink oink…. I was seated with Kerry, her Mum, Pat and my mum-in-law, Irene. Both Irene & Pat know all about trials and tribulations of reflux and stomach ulcers and gave me some fab advice on how to cope with it. Irene had a pack of Zantac in her bag and gave me some, which I took there and then. Kerry had some Rennie Ice and I took one of those too – what the heck, in for a penny, in for a pound eh! In my view, something had to flipping work. A couple of hours later, the bill was settled, Dad had been called and we were back on the coach heading home. The noise level would probably have smashed the sound barrier – 20+ women cracking jokes, telling stories of their day and giving Dad some stick - I had a ball. I took “Lola” off to give her a rest and give my head an airing. I seemed to get a second wind on the journey home (a different kind of wind than I have been suffering from recently - luckily for my fellow travellers). I am not sure if it was the company or the fact that I had been popping Gaviscon all day and had then added, Zantac & Rennie Ice to the mix – it definitely wasn’t alcohol cos I’m not really allowed to partake at the moment – but anyway, I was feeling good.
For the previous couple of weeks, I had been worried that I would not be able to make the trip. I hadn’t wanted to go along then be unwell and spoil the day for others. My stomach/chest pains had been almost unbearable in the week leading up to it and, when I wasn’t walking around clutching my stomach and looking six months pregnant, I could be found lying prone on the sofa as it was the only way to get some respite. I was a tad concerned that the only place to lay down in London would be a park bench and I didn’t want any tourists feeling sorry for me and dropping their spare change in my decaff vanilla latte, neither did I fancy getting into a fight with a homeless person for nicking their turf! I was gutted that I might miss it as it’s a brilliant day with a fantastic group of women who get on so well - we laugh from beginning to end. In the end I decided to make my decision on the day and, seeing as Dad was driving, I thought that I would at least go up on the coach but come home with him if I realised it was going to be too much.
However, on the day despite the crap weather, everyone was so excited, as usual. Lot’s of my friends kindly offered to sit with me whilst the rest shopped in Covent Garden (I had visions of looking like some mad bag lady surrounded by the others “bargains” lol). Some even said they would accompany me on the train if I felt the need to go home – not that I would have taken anyone up on this offer, though it was very considerate of them. In the end Mum, Kate and I joined one of our friends, Jackie and her Mum, Ena (who we hadn’t seen for a long time) for a walk round the Market followed by a lovely lunch in the Crusting Pipe, where we stayed until it was time to meet the rest of the group before the show. I am SO glad I made the trip. Thank you for a wonderful Ladies and, yes, I am in the process of sorting next year's show so don't worry ;-)
The following week was my "Nadir Week" - the week where my immune system has been beaten into submission by the nasty chemo and is waving the white flag. I am supposed to live in a bubble, cook all my own food, wash in purified water and wear a face mask if I am forced to interact with the "germy" general public - well, I am exaggerating a bit, but you get the drift! It was also the week of my Birthday - I was to turn 22 (again....) shut it!!
As you will have gathered from my previous posts, I don't do things by halves. So there I was on Monday morning, feeling pants because my stomach had gotten worse and worse and now no amount of Gaviscon etc was helping. I was also becoming worried that it was more than inflammation of the gullet, stomach and wind pipe - I was concerned that I may possibly have an ulcer caused by the chemo. In desperation I called the chemo unit to speak to a nurse. This is when the fun began..... She listened to my whinging and complaining and said she would speak to a Dr and call me back. Half an hour later she did so, telling me to "get yourself to A&E, the Doctor would like you to be seen. Oh and take an overnight bag". Now, I have read my "Cancer for Dummies" book so I know I am supposed to have an overnight bag packed "just in case" but have I done it? Have I heck as like - in my book, that's just tempting fate! So, for the next 10-15 minutes I frantically packed a bag with everything I might need if I was kept in; ear plugs (to blot out the snoring, farting, nurses talking and screams from the labour ward above), kindle, Lucozade (my staple drink for the last three months), a washbag, my chemo file and a hand towel. Just as well I didn’t get kept in as I forgot my PJs - Doh!
My friend Rachael did her Driving Miss Debbie bit and dropped me off at A&E. Remember the “fun” I mentioned above?... Well, as I have come to expect - they knew nothing about me being told to come in....... quelle surprise! I saw a triage nurse first, who took all my details and said she could see I was in a lot of discomfort and would get me seen by the Dr asap, which she duly did. She also arranged for an ECG, despite me telling her it was nothing to do with my heart but, because I mentioned those magic words “pains in my chest area” it was deemed necessary to stick those sticky tab things all over me and strap me up to what looks like a lie detector test. As expected, the test came back normal and I was sent back to the waiting area (I was still finding those tabs in the shower later that day!) A short while later I was called by Doctor Number 1, he introduced himself and asked what had brought me to A&E today (hmmm did he not read the notes that the triage nurse painstakingly wrote out?) – I felt like being flippant and saying “I came in Rachael’s car” but didn’t think he was in the mood for a quip. He gave me a cursory examination and said he was going to speak to a different Dr. Back to the increasingly full, germy waiting area for me until Dr No. 2 summoned me - this one didn’t bother to introduce himself – nice touch! Again I was asked why I had attended A&E that day - by this time I wanted to scream with frustration, but did not have the energy. Instead, I calmly explained for the third time that the Dr in the chemo unit had asked me to come in and be examined because of my stomach/chest problems which I had been suffering from for FIVE FLIPPING WEEKS. He asked if I could wait a minute whilst he read my notes " of course" I replied, relieved that at least he wouldn’t ask me any more stupid questions. LOL, what-a-mistaka-to-make-a!! A few minutes later, after studying the computer for a while and looking at my scan results, he looked up and said "and what type of cancer are we dealing with here" - I looked at him and for a split second I wondered if he was serious – then, wearily, I told him it was BC. His next question totally floored me........ (and if I had been feeling well, I would have bloody floored him) - he asked "and is that 100%......." the words "definite or confirmed" died on his lips when he saw the expression on my face (and probably noticed for the first time that I have no hair on my bonce). Now the "normal" Debbie would have said "No, mate, I just heard a lot about this chemo lark and thought I'd give it a whirl – woo hoo, what a ride eh!" but the ill, fed up, almost in tears and totally knackered Debbie meekly replied "yes on December 1st".
Anyway, after examining me he said he thought I should have a camera down my throat to see what was happening and went away to discuss this with my Onc. She evidently told him what she thought of this invasive and, in her opinion, pointless procedure and he came back telling me that, on no account, were they going to stop my chemo as 'your cancer is potentially curable" - boy I felt so comforted. Actually I was bleeping angry by now. I had NOT even hinted at stopping my chemo so I hoped he had NOT said this to my Onc. In the end he told me there was nothing he could really do for me and that I should just up my medication and he was sure it would all go away after chemo finished in April. So, after 3 hours of waiting in a crowded, germ ridden A&E department, I finally went home, laid down and wept. What a waste of bloody time and effort. I now felt worse than I had that morning and was hoping to God that I hadn’t picked up any nasty germs in the process.
The following day I had to go back to the hospital, this time to see a dermatologist about a mole that has started misbehaving. Thankfully, she told me its a something-or-other wart and nothing to be worried about – phew, a bit of luck at last!! My friend Debbie had come with me and we went off to Leigh for cake and coffee at Stop the World to celebrate (I had been convinced I had skin cancer - you can't help yourself, you think every ache and pain is something sinister). Whilst we were enjoying the delights that STW has to offer, my phone rang. It was the pillock Dr from the day before asking me how I was feeling and had my symptoms subsided. This time, fuelled by both the good news from the hospital and the Raspberry Chocolate Teacake from STW, I was as sarcastic as could be and told him that I was still feeling crap and that, no, surprisingly, the symptoms I'd had for the previous FIVE weeks had not miraculously gone away overnight after half an hour in his scintillating company. I think he was a bit put out - bloody tough, now he knew how I had felt the day before. He told me he had arranged an ultrasound for me the following day at 10am and reminded me that these were "very difficult to arrange and usually had a waiting list of 3-4 weeks". Was I supposed to feel grateful to him I wondered...... hmmmmm let me think….. Before we hung up he told me not to be late for the appt and to get my bloods tested at the chemo unit first. When I put the phone down I fell about laughing - the chemo unit is always running at least an hour late even from first thing in the morning, how on earth he expected me to get my bloods taken BEFORE a 10am ultrasound was anyone’s guess.
The following morning, when my friend Tracy and I arrived at the unit just after 9am, I was very surprised to discover that the Dr had called ahead and let them know I was coming in (all being he had called after the unit had closed and had to leave a message on the answerphone). He had requested my bloods be taken before my scan and I was sent over to the normal blood testing department, as all the nurses were busy in the chemo unit. As expected, it was absolutely rammed but the nice guy on the reception said that as I was in treatment I really shouldn't be sitting amongst the other patients so got me jumped up the list. I must add, I never asked him to do this and did feel quite bad about jumping the queue and tried to ignore the huffs and puffs as I walked past the rest of the patients about 5 minutes later, but, under the circumstances I was grateful for his kindness. The nurse taking my bloods chatted to me and asked what cancer I had and was there any history in my family. I explained that two Aunts on my Dads side had fought - and won - their own battles with The Git a number of years ago. She said that she had been in the health industry for over 50 years and noticed that she was dealing with an ever increasing number of younger women who had been diagnosed with BC and she found it very troubling as to what might be the cause. We both agreed with my surgeon that additives in our food and the crap being pumped into our enironment must have something to do with it - not just early detection. She also told me something very interesting. A close family member works for the Government in the weapons designing area. Remember that dust cloud that we woke up to find had covered our cars a few years ago? Remember the news said it was sand that had blown in on some Sahara wind………? Well, her family member said that was baloney. That there had been tests on Salisbury Plains and, well, if they told her what that dust had really been, they’d have to kill her!!!! Hmmmmmm…… make of it what you will, I am just passing it on – all you cynics out there will have a field day with that one eh?
Things were running unusually to plan and Tracy and I were waiting for someone to put a spanner in the works. We didn't have to wait long! We arrived at the ultrasound dept and the receptionist - who had obviously left her good humour at home that day - told me I wasn't on the list and we all know “if you ain’t on the list, you ain’t coming in…” I explained it was a last minte booking the day before and she grumpily phoned someone and asked if they knew about me - nope, they didn't either. She, more grumpily, asked a colleague who came to the desk if she knew about me - again no. Just when we were about to give up a Dr came out and she asked him. He said that yes, I was on the list and hey presto, she turned the page and there I was - obviously she was ill the day they taught "check both pages" on her "How to be a Grumpy Receptionist" course.... Smile love, it wouldn’t hurt and you might actually enjoy it!
I was taken through to my scan and the scanographer(?) squirted that cold stuff on my tummy and did his thing with the scan whatsit - sorry, I have no idea of the technical terms here, but am sure you all know what I am talking about - it looks like the scanner you use at a self check-out – I kept expecting “wrong weight – please wait for an assistant” or “please place the item into a bag” to appear on the screen. Thankfully, he told me that it all looked clear to him and that I should tell this to the Dr who had ordered the scan when I saw him, as the written report would take a while. We went back to the unit and the ladies on reception (who are, without fail, always lovely, smiley and very friendly ladies I might add) paged the pillock Dr. Finally he called back and I spoke to him on the phone and we swapped information. He said my bloods had come back fine (I could have told him this as my bloods were tested every week up until this point), in turn I told him the scan was clear. He asked me if I was feeling more comforted now? The penny dropped - Oh, I see, so I had spent another three hours in hospital - in a week I was supposed to stay away from germs - just to appease his feelings of guilt about his lack of compassion and action on Monday........ I made a non commital grunt and hung up and went to Costa for lunch with Tracy. Poor love, she’d spent her morning traipsing around the hospital – I think we went in virtually every unit apart from Materinity and the Morgue!
The next day was my Birthday and I was determined NOT to go anywhere near the hospital. You can imagine my reaction then when my PICC line sprung a leak that evening as Alan was changing the dressing and flushing the line. I realised my leg was all wet - as he was pushing the saline through the canula, it was peeing out the line all over my leg. We knew it was either blocked or split but couldn't tell which. Hannah was insisting that I should go to A&E - I acted like a four year old instead of a forty-four year old, stomped my foot and said "absolutely-no-beeping-way, it's my BIRTHDAY". I had an appointment with my Onc the following morning so would wait until then.
The following day Alan came with me to the Unit and we reported the leak – they called for a plumber nurse and I sat and waited for my appt with my Onc. When we got in to see her she was still pleased at the reaction The Git has had to my chemo. She asked how I was feeling now and I explained what had been happening over the past few weeks. She was very angry to hear about my experience with the pillock Dr in A&E and said she would be dealing with him. From some of the things she said, we did not feel this was just a way of appeasing me. She took my complaints very seriously and I hope, by now, he has been spoken to about his lack of tact when dealing with a seriously ill and obviously concerned patient. I asked her if I would still be a candidate for a full mastectomy, since the cancer has shrunk so much with the first round of chemo. She explained that they wouldn’t know until after all chemo was finished and more scans had been done. Then they would have one of their team meetings and discuss the next step. So, at this point I am still focusing on having a full mastectomy followed by radiation with reconstruction next year. If the plans change, don’t worry, you will be one of the first to know ;-)
After my meeting with the Onc, a nurse took me away to repair my leak. This involved snipping some of the length and moving the port further up my arm. She warned me that due to my height, most of the line was actually inside me, so I would be unable to have any further repairs. I am not too bothered to be honest and wouldn’t really have minded if she hadn’t been able to repair it. At that point I had only two chemo’s left and the associated blood tests. I am already planning on having the line removed as I do not need it for the Herceptin which will be every three weeks. After my repairs, Alan and I went out to celebrate my belated Birthday – guess where we went……..yep, you’ve guessed it Stop the World – no wonder the scales have gone up each time I have been weighed at the Unit.
Finally (yes you can get back to whatever it was you were doing 3 hours ago when you started reading this update lol), yesterday I had my second EC dose. It was a late appointment, 3.15pm (but I didn’t get seen until nearly 5pm and was home just after 7pm). My usual chemo buddy came with me, clutching her kindle and her goodie bag. Later on Alec dropped Hannah off at the unit as I had promised her she could come to one of my sessions. Her and Mum took it in turns to keep me company. Unfortunately for Hannah it was her turn when the nurse took my bloods – I thought he was going to have another patient on his hands lol. However, she shook herself out of it and was fine a couple of minutes later. She later told me she was glad she had come and would now be able to picture what was happening to me at the next session, when she was at school. We spent our time designing Alec’s 18th Birthday cake, which she has persuaded me to have a go at making argh! Alison, I may be calling on your advice hun !!!
Today we are off on a short holiday to see my sister & her family who live oop north. Can’t wait to see the Little Man who will be a year old next month – blimey, this time last year we were booking flights to fly to Abu Dhabi and meet him for the first time – where does the time go?
I am just hoping I don’t spend the 5 hours journey with my head over a bucket!!!!
Okay, well I have prattled on enough. Its now 6am and Alan will be up soon – bleeping steroids had me awake at 3am so that’s the last time I have a chemo appointment after midday, I can tell you!
Two more to go……..
As always, Onwards and Upwards
Debs x
Friday 30 March 2012
Sorry for not posting earlier but I have been too busy enjoying myself - yes, you read that right, I have been ENJOYING myself!!! After 3 months of feeling like something the cat brought in, played with, ate then threw up - I am finally feeling like me again - if I could cartwheel I would.....
Each March for the last four years I have organised a "Mums Wot Lunch" day out. The numbers have grown over the years and there are now about 25 of us going up to London for the day to shop, lunch, gossip and see a show. This year, however, I really didn't know if I was going to be well enough to go with them. I was gutted that I might miss it as its a brilliant day with a fantastic group of women who get on so well - we laugh from beginning to end. As it was, although my stomach was still bad, I decided that, as Dad was driving, I would go up on the coach but come home with him if I felt unwell.
I gave the group too many choices this year and they were split on their choice of show. In the end 5 went to see Blood Brothers and the rest of us saw Dreamboats and Petticoats - a brilliant show with a very young and enthusiastic cast. We had front row seats and felt like we were part of the show, by the end Mum (who had been whisked back to her teenage years and was singing along) and I were up dancing. The rest of our group were soon up too (apart from Kate and Trina who refused point blank - the trombonist noticed their lack of bopping so gave them a close up and personal demonstration of his instrument!!!). We had dinner at the Strand Palace Hotel and then laughed all the way home on the coach. I had a ball (and I know everyone else did). I had taken a pillow with me as I am usually asleep by about 9pm but I seemed to get a second wind on the coach home (a different kind of wind than I have been suffering from recently - luckily for my fellow travellers). I am not sure if it was the company or the fact that I had been popping Gaviscon, Zantac & Rennie Ice all day - but I was feeling good and am so glad I went. Thanks Ladies and, yes, I am in the process of sorting next year's show so don't worry.
The following week was my "Nadir Week" - the week where my immune system has been beaten into submission by the nasty chemo and is waving the white flag. I am supposed to live in a bubble, cook all my own food, wash in purified water and wear a face mask if I am forced to interact with the "germy" general public - well, I am exagerating a bit, but you get the drift! It was also the week of my Birthday - I was to turn 22 (again....) shut it!!
As you will have gathered from my previous posts, I don't do things by halves. So there I was on Monday morning, feeling pants because my stomach had gotten worse and worse and now no amount of Gaviscon etc was helping. I was also becoming worried that it was more than inflammation of the gullet, stomach and oesophagus - I was concerned that I had an ulcer caused by the chemo. In desperation I called the chemo unit to speak to a nurse. This is when the fun began..... She listened to my complaints and said she would speak to a Dr and call me back. Half an hour later she called telling me to "get yourself to A&E, the Doctor would like you to be seen. Oh and take an overnight bag". Now, I have read my "Cancer for Dummies" book so I know I am supposed to have an overnight bag packed "just in case" but have I done it? Have I heck as like - in my book, that's just tempting fate! So, for the next 10-15 minutes I frantically packed a bag with everything I might need if I was kept in; ear plugs (to blot out the snoring, farting, nurses talking and screams from the labour ward above), a book, Lucozade (my staple drink for the last three months), a washbag, my chemo file and a hand towel. Just as well I didnt get kept in as I forgot my PJs - Doh!
My friend Rachael did her Driving Miss Debbie bit and dropped me off at A&E. As I have come to expect - they knew nothing about me being told to come in....... I saw a triage nurse first - lovely lady who said she could see I was in a lot of discomfort and would get me seen by the Dr asap, which she duly did. The first Dr introduced himself and asked why I was at A&E today (hmmm did he not read the notes that the triage nurse painstakingly wrote out?). He gave me a cursory examination and said he was going to speak to a different Dr. Enter the second Dr (who I later discover is a trainee consultant oncologist). Again I was asked why I had attended A&E that day - by this time I wanted to scream with frustration, but did not have the energy. Instead, I calmly explained for the third time that the Dr in the chemo unit had asked me to come in and be examined. He asked if I could wait a minute whilst he read my notes " of course" I replied. A few minutes later, after studying the computer for a while and looking at my scan results, he asked me "what type of cancer are we dealing with here" - I looked at him and for a split second I wondered if he was serious - then told him it was BC. His next question totally floored me........ he asked "and is that 100%......." the word "definite" died on his lips when he saw the expression on my face (and probably noticed for the first time that I have no hair on my bonce). Now the "normal" Debbie would have said "No, mate, I just heard a lot about this chemo lark and thought I'd give it a whirl" but the ill, fed up and knackered Debbie meekly replied "yes". Please note that I have since complained about him to my Dr, who was very angry and apologetic. He either needs a toe up his ass and retraining or he should look for another job - one where tact is not required. Pillock!
Anyway, after examing me he said he thought I should have a camera down my throat to see what was happening and went away to discuss this with my Onc. She told him what she thought of this invasive and, in her opinion, pointless suggestion and he came back telling me that, on no account, were they going to stop my chemo as 'your cancer is potentially curable" - boy I felt so comforted. Actually I was bloody angry by now. I had NOT even hinted at stopping my chemo so I hoped he had NOT said this to my Onc. In the end he told me there was nothing he could do for me and that I should just "up your medication". So, after 3 hours of waiting in a crowded, germ ridden A&E department, I finally went home, laid down and wept. What a waste of bloody time and effort. I now felt worse than I had that morning.
The following day I had to go back to the hospital, this time to see a dermatologist about a mole that has started misbehaving. Thankfully, she told me its a something-or-other wart and nothing to be worried about - phew!! My friend Debbie had come with me and we went off to Leigh for cake and coffee at Stop the World to celebrate (I had been convinced I had skin cancer - you can't help yourself, you think every ache and pain is something sinister now). Whilst we were enjoying the delights that STW has to offer, my phone rang. It was thepratt Dr from the day before asking me how I was feeling and had my symptoms subsided. This time, fuelled by good news from the hospital and chocolate from STW, I was as sarcastic as could be and told him that I was still feeling crap and that, no the symptoms I'd had for the previous FIVE weeks had not miraculously gone away overnight after half an hour in his company. I think he was a bit put out - bloody tough, now he knew how I had felt the day before. He told me he had a arranged an ultrasound for me the following day at 10am and reminded me that these were "very difficult to arrange and usually had a waiting list of 3-4 weeks". Was I supposed to feel grateful to him I wondered...... hmmmmm let me think. Before we hung up he told me not to be late for the appt and to get my bloods tested at the chemo unit first. When I put the phone down I fell about laughing - the chemo unit is always running at least an hour late even from first thing in the morning, how on earth he expected me to get my bloods taken BEFORE a 10am ultrasound was anyones guess.
When my friend Tracy and I arrived at the unit just after 9am, I was very surprised to discover that the Dr had called ahead and let them know I was coming in (all being he had called after the unit had closed and had to leave a message on the answerphone). He had requested my bloods be taken before my scan and I was sent over to the normal blood testing department. As expected, it was absolutely rammed but the nice guy on the reception said that as I was in treatment I really shouldn't be sitting amongst the other patients so got me jumped up the list. I must add, I never asked him to do this and did feel quite bad about jumping the queue but, under the circumstances I was grateful for his kindness. The nurse taking my bloods asked me what cancer I had and was there any history in my family. I explained that two Aunts on my Dads side had fought - and won - their own battles with The Git a number of years ago. She said she was seeing more and more younger women coming in with breast cancer, in fact she explained that she had been in the health industry for over 50 years and it was only recently that she had started hearing of cancer affecting tonsils, tongue etc. and she found it very troubling as to what might be the cause. We both agreed with my surgeon that additives in our food and the crap being pumped into our enironment must have something to do with the increase in cases - not just early detection.
Things were running unually to plan and Tracy and I were waiting for someone to put a spanner in the works. We didn't have to wait long! We arrived at the ultrasound dept and the receptionist - who had obviously left her good humour at home that morning - told me I wasn't on the list. She grumpily phoned someone and asked them if they knew about me - nope, they didn't either. She, more grumpily, asked a colleague who came to the desk if she knew about me - again no. Just when we were about to give up a Dr came out and she asked him. He said that yes, I was on the list and hey presto, she turned the page and there I was - obviously she was ill the day they taught "check both pages" on her "How to be a Grumpy Receptionist" course....
I was taken through to my scan and the Dr squirted that cold stuff on my tummy and did his thing with the scan whatsit - sorry, I have no idea of the technical term here, but am sure you all know what I am talking about. He told me that it all looked clear to him and that I should tell the Dr who had ordered the scan this when I saw him. We went back to the unit and the ladies on reception (lovely, smiley and very friendly ladies I might add) paged thetwit Dr. Finally he called back and I spoke to him on the phone. He said my bloods had come back fine (I could have told him this as my bloods were tested every week up until this point), I told him the scan was clear. He asked me if I was feeling more comforted now? Oh, I see, so I had spent another three hours in hospital - in a week I was supposed to stay away from germs - just to appease his feelings of guilt about his lack of compassion on Monday........
The next day was my Birthday and I was determined NOT to go anywhere near the hospital. You can imagine my reaction then when my PICC line sprung a leak that evening. Alan was changing the dressing and flushing the line when I realised my leg was all wet - as he was pushing the saline through the canula, it was peeing out the line all over my leg. We knew it was either blocked or split but couldn't tell which one. Hannah was insisting that I should go to A&E - I acted like a four year old instead of a forty-four year old, stomped my foot and said "absolutely-no-beeping-way, it's my BIRTHDAY". I had an appointment with my Onc the following morning so would wait until then.
Each March for the last four years I have organised a "Mums Wot Lunch" day out. The numbers have grown over the years and there are now about 25 of us going up to London for the day to shop, lunch, gossip and see a show. This year, however, I really didn't know if I was going to be well enough to go with them. I was gutted that I might miss it as its a brilliant day with a fantastic group of women who get on so well - we laugh from beginning to end. As it was, although my stomach was still bad, I decided that, as Dad was driving, I would go up on the coach but come home with him if I felt unwell.
I gave the group too many choices this year and they were split on their choice of show. In the end 5 went to see Blood Brothers and the rest of us saw Dreamboats and Petticoats - a brilliant show with a very young and enthusiastic cast. We had front row seats and felt like we were part of the show, by the end Mum (who had been whisked back to her teenage years and was singing along) and I were up dancing. The rest of our group were soon up too (apart from Kate and Trina who refused point blank - the trombonist noticed their lack of bopping so gave them a close up and personal demonstration of his instrument!!!). We had dinner at the Strand Palace Hotel and then laughed all the way home on the coach. I had a ball (and I know everyone else did). I had taken a pillow with me as I am usually asleep by about 9pm but I seemed to get a second wind on the coach home (a different kind of wind than I have been suffering from recently - luckily for my fellow travellers). I am not sure if it was the company or the fact that I had been popping Gaviscon, Zantac & Rennie Ice all day - but I was feeling good and am so glad I went. Thanks Ladies and, yes, I am in the process of sorting next year's show so don't worry.
The following week was my "Nadir Week" - the week where my immune system has been beaten into submission by the nasty chemo and is waving the white flag. I am supposed to live in a bubble, cook all my own food, wash in purified water and wear a face mask if I am forced to interact with the "germy" general public - well, I am exagerating a bit, but you get the drift! It was also the week of my Birthday - I was to turn 22 (again....) shut it!!
As you will have gathered from my previous posts, I don't do things by halves. So there I was on Monday morning, feeling pants because my stomach had gotten worse and worse and now no amount of Gaviscon etc was helping. I was also becoming worried that it was more than inflammation of the gullet, stomach and oesophagus - I was concerned that I had an ulcer caused by the chemo. In desperation I called the chemo unit to speak to a nurse. This is when the fun began..... She listened to my complaints and said she would speak to a Dr and call me back. Half an hour later she called telling me to "get yourself to A&E, the Doctor would like you to be seen. Oh and take an overnight bag". Now, I have read my "Cancer for Dummies" book so I know I am supposed to have an overnight bag packed "just in case" but have I done it? Have I heck as like - in my book, that's just tempting fate! So, for the next 10-15 minutes I frantically packed a bag with everything I might need if I was kept in; ear plugs (to blot out the snoring, farting, nurses talking and screams from the labour ward above), a book, Lucozade (my staple drink for the last three months), a washbag, my chemo file and a hand towel. Just as well I didnt get kept in as I forgot my PJs - Doh!
My friend Rachael did her Driving Miss Debbie bit and dropped me off at A&E. As I have come to expect - they knew nothing about me being told to come in....... I saw a triage nurse first - lovely lady who said she could see I was in a lot of discomfort and would get me seen by the Dr asap, which she duly did. The first Dr introduced himself and asked why I was at A&E today (hmmm did he not read the notes that the triage nurse painstakingly wrote out?). He gave me a cursory examination and said he was going to speak to a different Dr. Enter the second Dr (who I later discover is a trainee consultant oncologist). Again I was asked why I had attended A&E that day - by this time I wanted to scream with frustration, but did not have the energy. Instead, I calmly explained for the third time that the Dr in the chemo unit had asked me to come in and be examined. He asked if I could wait a minute whilst he read my notes " of course" I replied. A few minutes later, after studying the computer for a while and looking at my scan results, he asked me "what type of cancer are we dealing with here" - I looked at him and for a split second I wondered if he was serious - then told him it was BC. His next question totally floored me........ he asked "and is that 100%......." the word "definite" died on his lips when he saw the expression on my face (and probably noticed for the first time that I have no hair on my bonce). Now the "normal" Debbie would have said "No, mate, I just heard a lot about this chemo lark and thought I'd give it a whirl" but the ill, fed up and knackered Debbie meekly replied "yes". Please note that I have since complained about him to my Dr, who was very angry and apologetic. He either needs a toe up his ass and retraining or he should look for another job - one where tact is not required. Pillock!
Anyway, after examing me he said he thought I should have a camera down my throat to see what was happening and went away to discuss this with my Onc. She told him what she thought of this invasive and, in her opinion, pointless suggestion and he came back telling me that, on no account, were they going to stop my chemo as 'your cancer is potentially curable" - boy I felt so comforted. Actually I was bloody angry by now. I had NOT even hinted at stopping my chemo so I hoped he had NOT said this to my Onc. In the end he told me there was nothing he could do for me and that I should just "up your medication". So, after 3 hours of waiting in a crowded, germ ridden A&E department, I finally went home, laid down and wept. What a waste of bloody time and effort. I now felt worse than I had that morning.
The following day I had to go back to the hospital, this time to see a dermatologist about a mole that has started misbehaving. Thankfully, she told me its a something-or-other wart and nothing to be worried about - phew!! My friend Debbie had come with me and we went off to Leigh for cake and coffee at Stop the World to celebrate (I had been convinced I had skin cancer - you can't help yourself, you think every ache and pain is something sinister now). Whilst we were enjoying the delights that STW has to offer, my phone rang. It was the
When my friend Tracy and I arrived at the unit just after 9am, I was very surprised to discover that the Dr had called ahead and let them know I was coming in (all being he had called after the unit had closed and had to leave a message on the answerphone). He had requested my bloods be taken before my scan and I was sent over to the normal blood testing department. As expected, it was absolutely rammed but the nice guy on the reception said that as I was in treatment I really shouldn't be sitting amongst the other patients so got me jumped up the list. I must add, I never asked him to do this and did feel quite bad about jumping the queue but, under the circumstances I was grateful for his kindness. The nurse taking my bloods asked me what cancer I had and was there any history in my family. I explained that two Aunts on my Dads side had fought - and won - their own battles with The Git a number of years ago. She said she was seeing more and more younger women coming in with breast cancer, in fact she explained that she had been in the health industry for over 50 years and it was only recently that she had started hearing of cancer affecting tonsils, tongue etc. and she found it very troubling as to what might be the cause. We both agreed with my surgeon that additives in our food and the crap being pumped into our enironment must have something to do with the increase in cases - not just early detection.
Things were running unually to plan and Tracy and I were waiting for someone to put a spanner in the works. We didn't have to wait long! We arrived at the ultrasound dept and the receptionist - who had obviously left her good humour at home that morning - told me I wasn't on the list. She grumpily phoned someone and asked them if they knew about me - nope, they didn't either. She, more grumpily, asked a colleague who came to the desk if she knew about me - again no. Just when we were about to give up a Dr came out and she asked him. He said that yes, I was on the list and hey presto, she turned the page and there I was - obviously she was ill the day they taught "check both pages" on her "How to be a Grumpy Receptionist" course....
I was taken through to my scan and the Dr squirted that cold stuff on my tummy and did his thing with the scan whatsit - sorry, I have no idea of the technical term here, but am sure you all know what I am talking about. He told me that it all looked clear to him and that I should tell the Dr who had ordered the scan this when I saw him. We went back to the unit and the ladies on reception (lovely, smiley and very friendly ladies I might add) paged the
The next day was my Birthday and I was determined NOT to go anywhere near the hospital. You can imagine my reaction then when my PICC line sprung a leak that evening. Alan was changing the dressing and flushing the line when I realised my leg was all wet - as he was pushing the saline through the canula, it was peeing out the line all over my leg. We knew it was either blocked or split but couldn't tell which one. Hannah was insisting that I should go to A&E - I acted like a four year old instead of a forty-four year old, stomped my foot and said "absolutely-no-beeping-way, it's my BIRTHDAY". I had an appointment with my Onc the following morning so would wait until then.
Monday 12 March 2012
GOODBYE TAXOL - HELLOOOO EC!!
Well, I've finally finished with Taxol he was beginning to annoy the heck out of me so I dumped his sorry ass and, though I am thankful for the job that he did - I won't miss him one bit. The side effects over the nine weeks gradually got worse until they finally floored me - hence no update on here for about three weeks. Before you start chemo you are given a fact sheet about the drug they intend on pumping into you and its "possible" side effects - common and less common. I read the sheet and thought I might be unlucky enough to get one or two of the SEs - how wrong can one person be? By the end of Week 9 I had ticked virtually all the boxes - oh well, I am nothing if not thorough I suppose! These included:
- numb/tingling fingers, toes, face and lips (face and lips only lasted a couple of days after each dose, but my toes have been numb for a few weeks now and it's now spread to the balls of my feet - makes walking a bit tricky at times I can tell you. I do a good impression of a duck first thing in the morning!)
- fatigue - the sofa and I are now extremely well acquainted and I am sure there is a "Debbie Dip" in the cushions
- hair loss - all over.... (but as Hannah "helpfully" pointed out, it is saving me a fortune in waxing lol)
- skin rash - my face looks as though I am reliving my teenage years and my right hand has the Taxol rash starting at the knuckles and going back towards my wrist - my left hand has it too but only mildly. E45 and Aquaeous cream are not working so I am going to ask what else they can suggest at the unit - probably more bleeding steroids but in a cream form knowing my luck - so now my hand will get fat and bloated!!
- headaches - splitting, banging headaches that come on suddenly but go oh so bloody slowly.
- aching joints - in my hips and legs in particular which feels like a bad case of the flu. The pains often wake me up in the night which is a bummer because then I can't get back to sleep grrr
- taste change - even water doesn't taste right
- nose bleeds - the lining in my nose has thinned and the little hairs that stop dust etc have gone, so my nose constantly needs blowing and is always full of blood and it's absolutely disgusting
- eyesight - I had laser surgery a few years ago and had 20/20 vision before my chemo started. Now I have difficulty reading the blurb on the tv and have had to increase the size of the font on my kindle. I am assured this SE (like the majority of them) is reversible - I flipping hope so or that was a couple of grand wasted!
- insomnia - I used to say "I sleep like a baby" now I really do - I wake every three flipping hours, sometimes for no apparent reason, just that my brain seems to be working overtime. I often "write" my blog in my head but can't be bothered to drag my sorry ass out of bed to type it up. I am gutted as this is when I write my best one liners but obviously, by the time I actually wake up in the morning - old chemo brain here has forgotten every word doh!
But, the worst SE has to be the pain and uncomfortable feeling in my stomach and behind my rib cage. This SE is the one that has made the past few weeks unbearable, reduced me to tears of both pain and frustration and made me seriously think about refusing any more treatment. I told the unit about the pains etc for three weeks and they thought it was heartburn/indigestion so upped my antacid meds - to no avail. The only way I can be semi comfortable and get any relief is to lay down, trouble is laying down all the time makes it difficult to hoover, make dinner, put the washing on and generally live normally! When the pain is at it's worst I feel as though my chest is going to explode - I have had visions of re-enacting that scene from Alien where it bursts out of John Hurts' chest and I've prayed it doesn't happen on the school run!
Finally, two weeks ago the nurse who was listening to me moaning about it yet again, decided to speak to the on call Dr about my problem. The Dr came over and said that they were unplugging me and sending me for a stomach and chest x-ray. The reason? to rule out the possibility that the steroids had made a hole in my stomach!!! What?? Can someone please tell me what good these bloody steroids actually do? All I know so far is they make me eat like a horse, therefore gain weight, give me water retention and now there was the possibility they had punctured my stomach arrghh! Kate was with me that day so off we trotted over to the x-ray department where we sat for nearly an hour waiting..... I seem to spend my life waiting in one room or another these days. My chemo appointment had been quite early that day and, for once, I had been called on time and was hooked up and running - it looked like we were going to get out before 6pm for once - but obviously "someone" had other ideas....
Nearly three hours later a Dr was finally located and made to stand still long enough to look at my x-rays. He came over to me and closed the curtains around us "uh oh" I thought "here we go". He told me that, thankfully, there was no hole - phew - I love you Dr! However, my stomach was quite inflamed (bloody steroids again grrr) and that I was severely constipated high up in the area behind my chest - my initial response? "WHAT? No I'm not, I "went" on the way to the xray - honest Doc" I don't usually argue with Drs but I was sure he was wrong. He kindly pointed out that he had seen the x-ray and knew what he was talking about. Well to say my flabber was gasted would be an understatement. Sorry, I know in the last entry I said I wouldn't discuss my bowel movements until I was old enough not to care but I didn't foresee this turn of events. He explained that the x-ray showed a severe impaction which had built up over a period of time and I was going to be prescribed a medicine that would help - Movicol (its vile - believe me). It turns out I probably should have been having this medicine from the beginning of my treatment as constipation is one of the main side effects of chemo - hmmmmm - trying hard not to rant here. I was given a box of the vile stuff and told to drink one sachet in the morning and one in the evening the next day (Tuesday) and, if this didn't work, I should make up a jug using four of them and drink it during the course of the following day (Wednesday). So the next morning, after the school run, I set myself up for a day on the sofa; Movicol - check, cushions - check, blanket - check, Kindle - check, banjaxer (tv remote to you) - check, nibbles - lots, I even left the living room door open so I had a clear run to the downstairs loo. I drunk the dreaded drink and waited - six hours (and numerous texts and phone calls asking if there had been any "movement") later I was still waiting. The following day was a repeat - although boredom was a big problem as daytime tv is terrible. This time I made up four of the sachets and drank it through the day.....................nothing! I was seriously thinking about calling in Dyno-Rod!
Two days later I met up with my Onc for the first time since Christmas. The meeting didn't start particularly well when she asked me "have you started chemo yet?" Hmmmm, well considering I am sitting there with no hair, patchy eyebrows, a taxol rash all over my swollen face & hands - what do YOU think Dr? I gently explained that, yes, I had had EIGHT bloody doses. We then started discussing my side effects. I had been told to ask her for some suppositories for the consipation and when I did her answer stunned me. "Debbie, you can see your GP for things like this you know". Now all along I had been led to believe that my GP is just a bystander in all this, that ALL my treatment/meds should be dealt with by the chemo unit. I was dumbfounded, if I had known I could involve him I would have been to see him 3 weeks ago to try and sort the problem, rather than waiting week after week until my next chemo appt to see what they could suggest next. Oh well, at least I know now I suppose. I have an appt with him this coming Thursday and am hoping he can sort me out once and for all - no comments please!
We continued chatting about my SEs and it was then she that told me off quite sternly and said that I should have been drinking SIX sachets of the vile stuff EVERY DAY since chemo began and it was at this point I lost my rag! This, as "they" say, was the straw that broke the camels back. I was soooo frustrated - why had no-one told me this, why had no-one told me I should be seeing my GP if I needed help between visits, why does one person say take paracetamol for the pains but another say don't because it will mask any infection and add to your constipation. For crying out loud, I have nothing but praise for the staff at the unit from the tea lady through to the most senior nursing staff - they are all bloody wonderful and do a very difficult and demanding job - always with a smile. But for goodness sake, surely the advice should be the same from the top down. Instead, I have often been given conflicting and confusing advice which has left me in tears of frustration and, at times, too worried to call the unit in case I am panicking over nothing and they are already stretched beyond their limits. Ok rant over.
After I had calmed down and sat down she asked me if I had felt the lump recently. I told her I don't actually go anywhere near it - in fact I try to pretend that breast doesn't exist (maybe I am preparing myself for the op but I also know that if I was to go feeling around the area on a daily basis, I would convince myself it had gotten bigger and I could do without that image in my head). She asked if she could examine me and spent sometime doing so. She was smiling when she had finished and asked me to lie on the examination bed so she could examine me further. This clueless wally should have been alerted by the big smile on her face but I was too busy repeating a mantra in my head "please don't have grown, please don't have grown" I hadn't gone in there with any expectation of it getting smaller because I had been told the first bout of chemo doesn't always make a difference, it's the second bout that does the job. As I was laying there she asked me to have a feel for myself and I tentatively did as she asked. Trouble was I couldn't feel anything and I said "I can't find it". The little jig she did accompanied by the punch in the air and the "yesssss" was all I needed. She said "exactly, you can't feel it because it has shrunk to almost nothing" OMG!!!! from 10cms to "almost nothing" I cannot describe my feelings but it was a mix of shock, disbelief and gratitude. I looked over at Mum who was just about holding it together. My Onc said "Debbie, you have been through Hell but this shows it has all been worth it" and by God, she was right. As we left Mum turned to say goodbye and my Onc was grinning like the proverbial Cheshire Cat and punching the air - I don't know who was more pleased that day! Mum and I left the unit had a cuddle and burst into tears. Then we phoned and texted everybody to let them know. The amount of tears that flowed that day could have solved the South East drought problem this year.
I have missed out quite a bit of the last three weeks, mostly because overall it has been a horrible time, but it's in the past now. We had some highlights though, like our family trip to Birmingham to visit Cadburys World, which we all thoroughly enjoyed (despite the fact I can't taste chocolate lol). Our trip to see Stomp at the Hippodrome the following day - which despite being a brilliant and very noisy show, I somehow managed to fall asleep halfway through (much to the amusement of the lady sitting next to me - I blame the heat and the low lighting lol). I was woken up by the cast playing steel drums and, if I'd had the room to fall off my seat, I probably would have done. However, seeing as my knees were almost up my nose, I settled for a jolt - which alerted Hannah to the fact I had fallen asleep, something she found hilarious. The Hotel was lovely but in the clubbing district so you can only imagine the sights we encountered on our trips out to dinner. I must be getting old cos when I saw the young girls in their nightdresses and stilletoes, all I could think was "blimey she must be bloody freezing". Our next door neighbour was a noisy, inconsiderate git who got a taste of my wrath at 1.30am when I'd been woken up by him singing at the top of his voice. I yelled out "SHUT UP" - Hannah was in the room otherwise there would have been an expletive in the middle of that sentence. He went quiet for a while then started singing again. I was all for going next door and sticking my bald head in his face and my knee in his groin, but Alan reminded me that I am ill - damn I really felt like taking my anger out on someone too. Instead, Alan phoned reception and they sent up a security guard who told him to shut up or get out - he went very quiet after that.
We did notice something very funny in the reception of the Hotel. You know they have those notice boards welcoming their visitors to the Hotel? Well, on the Saturday night, as we were returning from dinner, Alan cracked up and pointed to the board. It said "We would like to Welcome The Church of the Living God in Room 101" nothing funny about that eh? but, underneath it said "We would like to Welcome Ruth's Hen Party in Room 102" - oh Lordy, imagine if there was a mix up. We saw some of the "Hens" in reception enough said! Well it made us giggle.
Another highlight was my sister Gill and baby James' visit - the previous times I have been too ill to cuddle him but this time I made up for it big time. We had a lovely weekend and as James is ten months old now his character is really coming through. He was playing peek-a-boo with me when I was lying on the sofa. My head was aching so I took off my hat - oh dear, James did NOT like my new look. He bum shuffled backwards giving me a very odd look, turned round to his mum and promptly burst into tears. Bless him, he probably wondered why his Auntie suddenly looked like a boiled egg! I put my hat back on and he soon got over the shock and continued with our game - good lad!!
So, there have been some bright spots over the last few weeks and I couldn't have asked for better news at the Onc appointment. So I am going to end this post on a positive note. My new chemo started today - the lovely EC - one of which makes your wee red. I will post again when I have an update about any SEs this one brings but, I am hoping for an easier ride this time - hmmmm have I just jinxed myself I wonder?
Anyway, as always (and with feeling this time) Onwards & Upwards
Debs xx
- numb/tingling fingers, toes, face and lips (face and lips only lasted a couple of days after each dose, but my toes have been numb for a few weeks now and it's now spread to the balls of my feet - makes walking a bit tricky at times I can tell you. I do a good impression of a duck first thing in the morning!)
- fatigue - the sofa and I are now extremely well acquainted and I am sure there is a "Debbie Dip" in the cushions
- hair loss - all over.... (but as Hannah "helpfully" pointed out, it is saving me a fortune in waxing lol)
- skin rash - my face looks as though I am reliving my teenage years and my right hand has the Taxol rash starting at the knuckles and going back towards my wrist - my left hand has it too but only mildly. E45 and Aquaeous cream are not working so I am going to ask what else they can suggest at the unit - probably more bleeding steroids but in a cream form knowing my luck - so now my hand will get fat and bloated!!
- headaches - splitting, banging headaches that come on suddenly but go oh so bloody slowly.
- aching joints - in my hips and legs in particular which feels like a bad case of the flu. The pains often wake me up in the night which is a bummer because then I can't get back to sleep grrr
- taste change - even water doesn't taste right
- nose bleeds - the lining in my nose has thinned and the little hairs that stop dust etc have gone, so my nose constantly needs blowing and is always full of blood and it's absolutely disgusting
- eyesight - I had laser surgery a few years ago and had 20/20 vision before my chemo started. Now I have difficulty reading the blurb on the tv and have had to increase the size of the font on my kindle. I am assured this SE (like the majority of them) is reversible - I flipping hope so or that was a couple of grand wasted!
- insomnia - I used to say "I sleep like a baby" now I really do - I wake every three flipping hours, sometimes for no apparent reason, just that my brain seems to be working overtime. I often "write" my blog in my head but can't be bothered to drag my sorry ass out of bed to type it up. I am gutted as this is when I write my best one liners but obviously, by the time I actually wake up in the morning - old chemo brain here has forgotten every word doh!
But, the worst SE has to be the pain and uncomfortable feeling in my stomach and behind my rib cage. This SE is the one that has made the past few weeks unbearable, reduced me to tears of both pain and frustration and made me seriously think about refusing any more treatment. I told the unit about the pains etc for three weeks and they thought it was heartburn/indigestion so upped my antacid meds - to no avail. The only way I can be semi comfortable and get any relief is to lay down, trouble is laying down all the time makes it difficult to hoover, make dinner, put the washing on and generally live normally! When the pain is at it's worst I feel as though my chest is going to explode - I have had visions of re-enacting that scene from Alien where it bursts out of John Hurts' chest and I've prayed it doesn't happen on the school run!
Finally, two weeks ago the nurse who was listening to me moaning about it yet again, decided to speak to the on call Dr about my problem. The Dr came over and said that they were unplugging me and sending me for a stomach and chest x-ray. The reason? to rule out the possibility that the steroids had made a hole in my stomach!!! What?? Can someone please tell me what good these bloody steroids actually do? All I know so far is they make me eat like a horse, therefore gain weight, give me water retention and now there was the possibility they had punctured my stomach arrghh! Kate was with me that day so off we trotted over to the x-ray department where we sat for nearly an hour waiting..... I seem to spend my life waiting in one room or another these days. My chemo appointment had been quite early that day and, for once, I had been called on time and was hooked up and running - it looked like we were going to get out before 6pm for once - but obviously "someone" had other ideas....
Nearly three hours later a Dr was finally located and made to stand still long enough to look at my x-rays. He came over to me and closed the curtains around us "uh oh" I thought "here we go". He told me that, thankfully, there was no hole - phew - I love you Dr! However, my stomach was quite inflamed (bloody steroids again grrr) and that I was severely constipated high up in the area behind my chest - my initial response? "WHAT? No I'm not, I "went" on the way to the xray - honest Doc" I don't usually argue with Drs but I was sure he was wrong. He kindly pointed out that he had seen the x-ray and knew what he was talking about. Well to say my flabber was gasted would be an understatement. Sorry, I know in the last entry I said I wouldn't discuss my bowel movements until I was old enough not to care but I didn't foresee this turn of events. He explained that the x-ray showed a severe impaction which had built up over a period of time and I was going to be prescribed a medicine that would help - Movicol (its vile - believe me). It turns out I probably should have been having this medicine from the beginning of my treatment as constipation is one of the main side effects of chemo - hmmmmm - trying hard not to rant here. I was given a box of the vile stuff and told to drink one sachet in the morning and one in the evening the next day (Tuesday) and, if this didn't work, I should make up a jug using four of them and drink it during the course of the following day (Wednesday). So the next morning, after the school run, I set myself up for a day on the sofa; Movicol - check, cushions - check, blanket - check, Kindle - check, banjaxer (tv remote to you) - check, nibbles - lots, I even left the living room door open so I had a clear run to the downstairs loo. I drunk the dreaded drink and waited - six hours (and numerous texts and phone calls asking if there had been any "movement") later I was still waiting. The following day was a repeat - although boredom was a big problem as daytime tv is terrible. This time I made up four of the sachets and drank it through the day.....................nothing! I was seriously thinking about calling in Dyno-Rod!
Two days later I met up with my Onc for the first time since Christmas. The meeting didn't start particularly well when she asked me "have you started chemo yet?" Hmmmm, well considering I am sitting there with no hair, patchy eyebrows, a taxol rash all over my swollen face & hands - what do YOU think Dr? I gently explained that, yes, I had had EIGHT bloody doses. We then started discussing my side effects. I had been told to ask her for some suppositories for the consipation and when I did her answer stunned me. "Debbie, you can see your GP for things like this you know". Now all along I had been led to believe that my GP is just a bystander in all this, that ALL my treatment/meds should be dealt with by the chemo unit. I was dumbfounded, if I had known I could involve him I would have been to see him 3 weeks ago to try and sort the problem, rather than waiting week after week until my next chemo appt to see what they could suggest next. Oh well, at least I know now I suppose. I have an appt with him this coming Thursday and am hoping he can sort me out once and for all - no comments please!
We continued chatting about my SEs and it was then she that told me off quite sternly and said that I should have been drinking SIX sachets of the vile stuff EVERY DAY since chemo began and it was at this point I lost my rag! This, as "they" say, was the straw that broke the camels back. I was soooo frustrated - why had no-one told me this, why had no-one told me I should be seeing my GP if I needed help between visits, why does one person say take paracetamol for the pains but another say don't because it will mask any infection and add to your constipation. For crying out loud, I have nothing but praise for the staff at the unit from the tea lady through to the most senior nursing staff - they are all bloody wonderful and do a very difficult and demanding job - always with a smile. But for goodness sake, surely the advice should be the same from the top down. Instead, I have often been given conflicting and confusing advice which has left me in tears of frustration and, at times, too worried to call the unit in case I am panicking over nothing and they are already stretched beyond their limits. Ok rant over.
After I had calmed down and sat down she asked me if I had felt the lump recently. I told her I don't actually go anywhere near it - in fact I try to pretend that breast doesn't exist (maybe I am preparing myself for the op but I also know that if I was to go feeling around the area on a daily basis, I would convince myself it had gotten bigger and I could do without that image in my head). She asked if she could examine me and spent sometime doing so. She was smiling when she had finished and asked me to lie on the examination bed so she could examine me further. This clueless wally should have been alerted by the big smile on her face but I was too busy repeating a mantra in my head "please don't have grown, please don't have grown" I hadn't gone in there with any expectation of it getting smaller because I had been told the first bout of chemo doesn't always make a difference, it's the second bout that does the job. As I was laying there she asked me to have a feel for myself and I tentatively did as she asked. Trouble was I couldn't feel anything and I said "I can't find it". The little jig she did accompanied by the punch in the air and the "yesssss" was all I needed. She said "exactly, you can't feel it because it has shrunk to almost nothing" OMG!!!! from 10cms to "almost nothing" I cannot describe my feelings but it was a mix of shock, disbelief and gratitude. I looked over at Mum who was just about holding it together. My Onc said "Debbie, you have been through Hell but this shows it has all been worth it" and by God, she was right. As we left Mum turned to say goodbye and my Onc was grinning like the proverbial Cheshire Cat and punching the air - I don't know who was more pleased that day! Mum and I left the unit had a cuddle and burst into tears. Then we phoned and texted everybody to let them know. The amount of tears that flowed that day could have solved the South East drought problem this year.
I have missed out quite a bit of the last three weeks, mostly because overall it has been a horrible time, but it's in the past now. We had some highlights though, like our family trip to Birmingham to visit Cadburys World, which we all thoroughly enjoyed (despite the fact I can't taste chocolate lol). Our trip to see Stomp at the Hippodrome the following day - which despite being a brilliant and very noisy show, I somehow managed to fall asleep halfway through (much to the amusement of the lady sitting next to me - I blame the heat and the low lighting lol). I was woken up by the cast playing steel drums and, if I'd had the room to fall off my seat, I probably would have done. However, seeing as my knees were almost up my nose, I settled for a jolt - which alerted Hannah to the fact I had fallen asleep, something she found hilarious. The Hotel was lovely but in the clubbing district so you can only imagine the sights we encountered on our trips out to dinner. I must be getting old cos when I saw the young girls in their nightdresses and stilletoes, all I could think was "blimey she must be bloody freezing". Our next door neighbour was a noisy, inconsiderate git who got a taste of my wrath at 1.30am when I'd been woken up by him singing at the top of his voice. I yelled out "SHUT UP" - Hannah was in the room otherwise there would have been an expletive in the middle of that sentence. He went quiet for a while then started singing again. I was all for going next door and sticking my bald head in his face and my knee in his groin, but Alan reminded me that I am ill - damn I really felt like taking my anger out on someone too. Instead, Alan phoned reception and they sent up a security guard who told him to shut up or get out - he went very quiet after that.
We did notice something very funny in the reception of the Hotel. You know they have those notice boards welcoming their visitors to the Hotel? Well, on the Saturday night, as we were returning from dinner, Alan cracked up and pointed to the board. It said "We would like to Welcome The Church of the Living God in Room 101" nothing funny about that eh? but, underneath it said "We would like to Welcome Ruth's Hen Party in Room 102" - oh Lordy, imagine if there was a mix up. We saw some of the "Hens" in reception enough said! Well it made us giggle.
Another highlight was my sister Gill and baby James' visit - the previous times I have been too ill to cuddle him but this time I made up for it big time. We had a lovely weekend and as James is ten months old now his character is really coming through. He was playing peek-a-boo with me when I was lying on the sofa. My head was aching so I took off my hat - oh dear, James did NOT like my new look. He bum shuffled backwards giving me a very odd look, turned round to his mum and promptly burst into tears. Bless him, he probably wondered why his Auntie suddenly looked like a boiled egg! I put my hat back on and he soon got over the shock and continued with our game - good lad!!
So, there have been some bright spots over the last few weeks and I couldn't have asked for better news at the Onc appointment. So I am going to end this post on a positive note. My new chemo started today - the lovely EC - one of which makes your wee red. I will post again when I have an update about any SEs this one brings but, I am hoping for an easier ride this time - hmmmm have I just jinxed myself I wonder?
Anyway, as always (and with feeling this time) Onwards & Upwards
Debs xx
Saturday 3 March 2012
Again its been a while since I last posted an update. So much has happened that its difficult to know where to begin, what to include and what to leave out.
We had our family trip to Birmingham where we visited Cadburys World
The last three weeks have been the worst so far, with the side effects totally flooring me. I mentioned in a previous post that my rib cage was painful and it felt as though I was 4 months pregnant. The chemo unit believed this to be caused by indigestion/heartburn so upped all my antacid meds and lowered my steroid dose - to no avail. Finally, at my 8th chemo (27/2) the nurse who details the side effects I have experienced that previous week, decided to ask a Dr to examine me.
We had our family trip to Birmingham where we visited Cadburys World
The last three weeks have been the worst so far, with the side effects totally flooring me. I mentioned in a previous post that my rib cage was painful and it felt as though I was 4 months pregnant. The chemo unit believed this to be caused by indigestion/heartburn so upped all my antacid meds and lowered my steroid dose - to no avail. Finally, at my 8th chemo (27/2) the nurse who details the side effects I have experienced that previous week, decided to ask a Dr to examine me.
Tuesday 14 February 2012
THREE WEEKS, SIX HOURS, TWO HOT CHOCOLATES AND A BOWL OF CEREAL LATER......
Forgive me blog for I have sinned, it’s been 2 weeks, 3 chemo’s and, what feels like a lifetime since I last posted – I think I have can add Bloggers Block to my list of side effects.
When I was first diagnosed ten weeks ago (is it really only that short time ago), I was hit by a torrent of emotions all within the first couple of hours and days; shock, fear, grief, anger and then, gradually, a grudging realisation that it was not a nightmare I would be able to wake up from. I was assured by family and friends that “if anyone is going to survive The Git, you are Debs” and I held on to these comments and any positive comments from my Drs ie we are looking to cure you, not put you in remission, with grim determination (though I admit I did not always believe it myself – hence the Eeyore moments).
Gradually over time I found myself repeating this mantra to everyone I spoke to – I think, at times, I was trying to convince myself more than them. When I read back over the first few blog entries I can remember exactly how I was feeling – scared as hell but determined to kick The Git’s butt. I also remember one person (my BCN) warning me very early on that, at some point during this battle, the reality of my diagnosis would hit me like the proverbial ton of bricks and I would very likely hit rock bottom. Her advice to me was this “go with it but try to remember how positive you are feeling right now, admit if you are not coping and accept all offers of help, listen to your body and take plenty of rest because most likely it will happen but it will pass”. If I am honest I didn’t believe her. I was feeling so cocooned by both my family/friends and my Team at the hospital (I had weekly appointments, sometimes twice weekly) that I couldn’t see a point at which I would be overwhelmed by anything negative. She was right though and three weeks ago, my outlook started to change, the fears started creeping in and consuming me (is the chemo working, if it’s so curable, why DO so many women and men still die of BC each year – more depressing, will I?) my mood just kept getting lower and lower until finally, that “ton of bricks” with my name on it hit.
Bear with me here and I will try and describe it. When I was a kid my mum had a car “Tuppence” – don’t laugh she loved that car. One day, when Mum was driving us kids home from somewhere or another, steam or smoke (I’m not a mechanic I don’t know which one – I didn’t wait to find out) suddenly started pouring from Tuppence’s dashboard (this happened right opposite Daisy’s – the most exclusive dress shop in East Ham at the time – arrgh mortifying). Mum quickly pulled the car over to the side of the road and sounded the “Abandon Ship” klaxon ie. “Kids!! out of the car NOWWW”. None of us needed telling twice. Whilst we waited for the Fifth Emergency Service to arrive (my Dad!), we all stood and watched as the car continued to smoke/steam at the side of the road with passers-by stopping to gawp. It was like one of those ACME cars on the cartoons and I fully expected to see the bonnet to fly off into space, doors to fall out, all four tyres to burst and the body to collapse to the floor with a Pffft and a sigh! And that after a gradual decline over the previous two weeks (minus the steam/smoke) was exactly how I felt last Thursday – my bottom hit rock.
At this point I would like to point out two things;
1. After Tuppence’s sad demise, Dad bought Mum a “new” car (a red Escort) he searched high and low for the right one (hmmm), it’s number plate was (you’ll love this) C?? OCK – I’ll leave it to you to work out what we nicknamed that one. I don’t seem to remember her driving it for very long before she handed it over to my brother Kevin as his first car though – wonder why?
2. Our history of embarrassment with the shop, Daisy, didn’t end there. My Mum was looking for a new outfit (probably for one of the Ford’s Ladies Nights her and Dad used to go to) and off to the High St we trooped. Whilst in Daisy, my sister Gill disgraced herself. My memory is a bit hazy (probably self-preservation) but I do know it involved a fully dressed mannequin in the window ending up in a heap on the floor and Gill being found very close to where the attack took place – and the O’Briens making a sharp exit. Later on, as a teenager looking for something to wear to the weekly trips to the Ilford Palais or the Shannon centre, I only entered that shop as a last resort - just in case they remembered who I was related to. Gill, remember that photo you put on FB – Gotcha!
Since my last post I have had three more chemo dates and the side effects are getting worse with each dose. I’d like to meet someone, anyone, who has “sailed through chemo” because they are either incredibly lucky, have an extremely strong constitution, a will of iron or a very bad memory – apart from the bad memory, I have none of the above. Actually, I take that back, I don’t want to meet them or even hear about them anymore, it only makes me feel more of a failure that I am not coping as well as I thought I would or, indeed, should.
Maybe it’s more intense because I am being poisoned weekly, I don’t know. Maybe when I change to EC, which is given three times over a nine week period, it won’t feel so relentless. At the moment, I get my chemo on a Monday (and so far I haven’t had one session where I have been in and out in 2-3 hours – for one reason or another, each visit has taken between 6-8 hours, with the longest taking 10 hours). I arrive home late evening as white as a sheet, exhausted, feeling “icy”, ready for dinner and my bed and not necessarily in that order. On Tuesday I wake up very early (hence I started writing this at 4am) but am usually almost “normal’ and can go out and about feeling fine – I think it has something to do with the amount of steroids they pump into me via IV(y) – I am probably as high as a kite! Wednesday arrives and I am beginning to feel quite tired by mid afternoon, but still able to do things and some of the milder side effects have started making themselves known. By Thursday most of the side effects have now hit; an acne like rash on my face, headaches, tingling and numbness in fingers and toes, pains in my legs, eyesight problems, upset stomach, chills and the worst side effect of all, heartburn and indigestion and a painful ribcage. My stomach feels like its too big for my insides and I am unable to sit up straight. I walk around as though I am about 4 months pregnant as gradually, during the day, my stomach swells up regardless of how many pints of water I have been drinking since Monday, to flush the excess toxins away. I can only wear leggings, loose trousers and baggy tops as everything else feels as though it is crushing me. At yesterdays chemo I asked for a specific tablet I had read about on the BCC forums and I am hoping it will help with this SE – the others I can cope with. I am drinking so much milk I will soon either start mooing or develop Mad Cows Disease – although, there are some people who would say…………
For the past three weeks I had been feeling lower and lower but I didn’t really want to tell anyone at first. I am fully aware that my treatment will go on for the rest of this year and I don’t want to be thought of as a whinger. I don’t want people crossing the road to avoid me in case I start banging on about my aches and pains – or worse, my bowel movements – JOKE I promise I won’t be subjecting anyone to a minute by minute description of them until I am old enough not to care. My nan had a friend from Bingo like that, us kids called her Mrs Dundee Cake (I can’t remember why now). When I was at school my nan came over every Tuesday and Mrs DC knew that. Once she was in the house, you couldn’t get rid of her. One Tuesday my nan couldn’t make it but Mrs DC didn’t know that and she came knocking. We had just made cheese on toast for our lunch when the doorbell rang, none of us wanted to open the door and get stuck with her, so we hid behind the sofa until she eventually gave up – she lived through the war – she didn’t give up easily! She peered through the windows and rang the bell again and again, but finally she went home (probably knowing all the time we were there *blush*). We were all laughing and giggling when we came out from our hiding place – only to have the smiles wiped off our faces when we saw that our dog, Mona, had taken advantage of our disappearing act and had eaten our lunches – karma is literally a bitch eh!
Anyway, I don’t want to be someone’s Mrs Dundee Cake, so when asked how I was, I continued to reply “fine”. On Thursday this week, however, I came unglued and I had my ACME car moment – the wheels came off. I started crying at Hannah’s counseling session and didn’t really stop for the rest of the day. The counsellor told me I am most definitely NOT coping and that I should admit it to myself as much as anyone else. She called my Dr and performed a miracle – she got me an appointment for the same day with one of the main doctors at my surgery – I am going to take her some bread and water next week and see what she can do with that.
I dropped Hannah back at school and broke down again in reception – thank goodness not many people were about. My friend, Kerry works there so took me into a side room, handed me a box of tissues and let me blub all over her. She too told me I MUST tell my friends when I am low, that they are all there for me and want to help. I left a while later feeling a little better. As I got in the front door I received a text from Tracy. Kerry had told her what had happened at school and that she was concerned about me. Tracy was with me in minutes and again I was sobbing. She stayed with me for a couple of hours until I was feeling better – she would have stayed all day, but could see I was in need of a nap before Hannah got home from school.
Later in the evening, Rachael texted me to see if I was up to our Friday morning get together. I explained that Eeyore had taken up residence on my sofa and nicked the banjaxer. But that I was hoping Tigger would arrive over night and evict him and would let her know in the morning. The following morning, I did wake up feeling a bit more like the old me so took up her kind offer of a lift into Rayleigh - if we don’t start walking again soon, the girls are going to blame me for them becoming unfit! After a bit of shopping and mooching, we all needed coffee so retreated to Costa – who really should look at moving to bigger premises, I object to being asked “are you nearly finished, are you leaving soon and can we have your seats” grrrr. I had a midday hospital appointment with the rehabilitation unit. The arm I had my SNB op on has developed “cording” which is uncomfortable and a little painful. It is as though an elastic band has been tied from the scar and travels up through my armpit, along my upper arm towards my elbow – you can actually see the tendon – yuck!). Due to a combination of the side effects, a day spent in the chemo chair and my lowering mood, I had not been as regimental with my exercises as I should and the cording developed very quickly over two days. I told the girls I needed to be home by 11.30 in order to get to the hospital in time. Rachael offered to drive me to my appointment and I said I was ok to drive myself (to be honest I wasn’t, I was knackered and considering calling a cab). She looked exasperated, leant forward and said “Debs, imagine I have a Mary Poppins bag, this bag is bottomless, you can never ask for too much help and that’s what we are all here for – and anyway, I am happy to perform my Driving Miss Debbie duties”. By the time Suzanne and Tracy returned to the table it was all arranged. They would drop me off at the hospital, go and do their food shopping and pick me up after my appointment – I was so grateful.
Another of our friends, Alison is a wonderful cake baker, she is also a natural born comedienne – her talents are wasted on a sales desk! Before Christmas she arranged a “girls nite” at hers and invited us all round – then The Git happened and all the crap that entailed, so the evening was finally re-arranged for last Friday. By 6pm, after a day of shopping, hospital and a few more tears, I was sound-o on the sofa. The girls were knocking for me at 7.15 and I was hoping a quick doze would mean I would last until at least 10pm - yes, ambitious I know lol. Alison had been cooking up a storm all afternoon. She wanted to make food, cakes and cupcakes that I could actually taste. She succeeded!!! Her Death by Chocolate cupcakes were literally melt in the mouth – if I remember right (I had “enjoyed” two Bacardi Breezers – my first alcohol since Christmas), they were Belgian Double chocolate sponge with Belgian Chocolate Buttercream icing, decorated with Mars Planets and large Milk and White Chocolate Buttons – when I say they melted in your mouth, believe me I am NOT fibbing. Her second masterpiece was a lemon sponge, she had used three lemons, lemon syrup and lemon buttercream icing and was over the moon that I could taste it. Her daughter had tried a bit of the buttercream during the day and pulled such a face at the sharpness – but because my tastebuds are killed weekly, this wasn’t the case for me. Alison – as we discussed on the night, you should have your own tea shop hun, I hope James Earl Jones can forgive me, but in a play on the words from his famous speech in the film Field of Dreams “build it and they will come”. We had a great evening, full of laughs and lots of cake! However, at 9.30 Tracy said she thought it was time I went home as I was almost asleep at the table – I personally think they wanted more cake between them, I’m not daft…… Kerry drove me home – and went back for more cake (see!!!!). Thanks again Ladies xx
Before I continue with this post, I would just like to say that my friends are wonderful, fantastic, brilliant, gorgeous and bloody lovely.
My fourth chemo / second Herceptin was two weeks ago. On this occasion my sister Kate wanted to come with me. This was despite not arriving home from holiday in Egypt until the wee small hours. She had told Mum that she wanted to see for herself what chemo was all about. We rocked up with our chemo picnic bags at about 10.30 and waited for my name to be called. Alan had donned his Vlad outfit and taken my bloods the previous Friday morning and I had dropped them in at the Drs surgery for testing. He was a bit concerned whether or not he had done it correctly – the vials leaked a bit (sorry, should have warned you there lol). However the nurse said he had done such a brilliant job – both of the blood work and re-dressing the PICC line site – that he had put her to shame. So a big pat on the back to him – he has to do my bloods again this week and is already making Hannibal Lecter noises when I mention it!
Finally after about an hours wait we were called through. Kate was impressed with the ward and its layout – not at all like a normal ward. The nurse went through my week’s side effects and explained what may or may not be causing them ie. the chemo causes one side effect and so they give you something to combat it but, this too comes with its own side effects – Kate’s comment of the day? “There’s nothing fun in this at all is there Debs” lmao errrr No! I think she was a little taken aback at exactly what chemo can do to a person – after all, it is very true to say that chemo can and does kill – a fact you try not to dwell on but is always at the back of your mind. They don’t get you to sign a disclamer and agreement before you have chemotherapy treatment for nothing you know.
On this occasion the nurse didn’t tell me when she was giving me the piriton, I suddenly realised Kate’s face was fading in an out and I couldn’t keep my eyes open – Kate laughed and said “go to sleep, I will read”. I kind of drifted off for a while, not asleep but unable to really have much of a conversation – actually it’s quite a pleasant experience because you really don’t give a toss where you are for about 20 minutes – the world could go to hell in a hand basket for all you care.
When the piritons initial effects had worn off I came to and was freezing – I have saline pumped in for about an hour or so and again in between treatment bags, it chills your whole body – this is probably what wakes you up from the piriton. We covered me in coats, scarves and cardigans and sat there chatting and eating (I do LOTS of eating on a Monday and often see the other patients nudging each other – “look what she is eating now George – blimey, she’s gonna balloooooon”. An elderly couple sitting opposite me spent virtually their whole appointment watching me – he just sat there with his hands in his lap staring at me, whilst she knitted. They kept speaking to each other out of the sides of their mouths, all the time looking at me – it didn’t spoil my appetite though ;-) After a while, Kate went off to explore the visitor lounge and learned how to operate the drinks machine. She is coming with me again in two weeks because there are a total of 7 coffees, 3 teas, 3 hot chocolates and a few herbal teas – she only managed to try a couple and wants to work her way through the rest! You don’t have to pay, but you do give a donation – I think it might work out cheaper for Kate to pop along to the hospital Costa Coffee next time!!!
Another thing I have noticed is that I am often the youngest on the ward by quite a few years. I don’t know where all the younger women and men are – maybe they are on different days to me – but it does make me wonder. Not that my fellow patients aren’t a laugh though, last weeks waiting room was hysterical with tales of hair loss embarrassment, wind etc. Two of the women had us all in stitches, but I did notice one woman sinking further and further into her chair – if she could have disappeared into the wall behind her, I think she would. I pointed her out to Mum saying she looks like a rabbit caught in headlights. We had such a long delay that they brought us all sandwiches, coffee and biscuits to keep us going. Eventually I was called in and I saw one of the ladies I’d been laughing with come through about an hour later. Some time afterwards, I saw the scared lady and her husband being brought through. She was having the guided tour – then I understood – it was her first visit and the talk in the waiting room had obviously unnerved her. I hope that after I had been called in, she got talking to the others and they were able to calm her fears a little.
Last week and yesterday (13/2) my usual partner in crime came with me (yes mum that’s you). My sister in law, Trina is on half term break so she and Freddy drove us in. Last week we had a very long delay due to staff sickness – this was on the day after the snow had arrived so I think it was more likely the nurses were off having a “snow day” – and who can blame them, they work very long hours and are on the go constantly on the chemo ward. When the unit was in its planning mode, it was expected to be twice the size it is now with twice the number of beds. Some bigwig who holds the purse strings decided against this. I honestly cannot see why. The unit covers a huge area – not just Southend, I have met people who have travelled for miles as I believe ours is the only NHS hospital providing chemotherapy services in the South East Essex area – when you read the stastistics of how many people are diagnosed each day/week/month/year – you have to wonder how long the unit will be able to cope under the mounting pressure.
Ok off the soapbox – for now! This isn’t a political blog.
On Tuesday I met up for lunch with Rita and Jackie. Rita kindly picked me up and we had a lovely lunch. Jackie is another one trying to find something I can taste and presented me with two bags of chocolates – Moments and Malteasers – thank you hun. It was nice to get out and look at some different walls for a change.
Last week I also found a reflexologist. My chemo brain was obviously in operation because I totally forgot about a neighbour who is a registered reflexologist. Her husband stopped me and said he hoped I didn’t mind but he has been reading my blog (of course I don’t mind, I am always taken aback when people mention that they enjoy reading it, but must admit it does make me chuckle when they then look aghast and say “oh that sounds so wrong, I hope you know what I mean” – don’t fret, I understand totally, honest. I am just glad someone is reading my ramblings other than me!)
Anyway, he went on to say that he had read my last post where I mentioned trying to find a reflexologist and told me to have a chat with his wife. She is a lovely, friendly lady and I am really looking forward to starting this week. She also practices Reiki and other complementary therapies, so we will be chatting about those too. I have explained about Hannah and she may be able to help her as well – another step forward in the right direction. I hope she doesn’t mind me mentioning her – I won’t put in any name’s as I haven’t mentioned that I was going to blog this.
Our friends The Elliotts came over a couple of weeks ago. We hadn’t seen them since NYE and it was a great evening. Jason had bought his sharpie pen, just in case I was going to let him draw hair on my head – hmmm I don’t actually want to look like Rab C Nesbit thanks Jase!! So the answer was an emphatic NO! When they arrived Alan was flushing my PL and changing the dressing – I thought Lisa’s eyes were going to pop out of her head. She is another one who has missed her calling. She once told us she would love to be a chiropodist – euwww other peoples feet and toenails!!!! She was almost over Alan’s shoulder asking if she could do anything to “help” – Alan and I were in fits. She asked if she should be taught to take bloods etc just in case Alan can’t do it for whatever reason – I am not sure if she was joking or not lol. Jason, meanwhile, was looking a bit green round the gills – he and I are a bit more squeamish than Vlad and Elvira! The kids were fascinated by it and not at all fazed. I think they were more taken aback that I had no hair (I was wearing my chemo hat) – when they’d last seen me I’d looked like Aunty Debbie, just a quieter version (yep, hard to believe I know but, in my defence, I had just come out of hospital).
Lisa had been “chemo shopping” and bought me a selection of gifts; Learn to speak Italian CDs, Alan is downloading them to my ipod (she read it on my blog), Coconut body cream – sniff it and you can almost imagine you are on a tropical beach, dark chocolate, Lime curry crisps (“if you can’t taste them I give up”) and a Sanctuary gift set – spoiled rotten I am ! I managed to stay up until midnight (not sure how I did it) and we waved them off, a little sad that we weren’t going to be going on holiday with them the following week to France. Twenty of us were meant to be going ski-ing but obviously we have had to cancel – we will be with them next year though!
Well this is turning into War and Peace (that will teach me for leaving it so long). I think I have covered just about everything that has happened over the past few weeks. I have had Taxol number 6 now so 3 more to go before I change to the new regime – if all goes to plan (ha ha ha) I should have my last chemo on 23 April – as Rachael pointed out “St Georges Day” – how apt!
Okay, as always (and with more feeling this time) Onwards & Upwards!
Debs x
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