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
