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
