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
