Well a lot has happened since I last posted and not all of it pleasant, but that comes later.
When I last left you we were on Chemo countdown. I spent the weekend before busily buying all the items I’d got left on my list to hopefully counteract the myriad possible side effects. So now I’m now the proud possessor of nausea Sea-Bands, ginger chewing gum, a years supply of ginger nuts (any excuse), various baby/sensitive skin appropriate body and hair lotions and body washes, nail nourishing creams, eye drops and black nail varnish. And remember the pyjamas that were bought and duly returned – well they were now back on the shopping list. This time it appears I need a hospital bag packed and ready in case of an emergency. The only consolation this time, was that several months further on, there was more choice available as autumn approached. That said the designs left much to be desired. I’m nearly 60 years old and do not want pink unicorns and cherubs, I just want basic pyjamas at a reasonable price. Well I found a pair, and all I’ll say is that they were a reasonable price. Should you find yourself in a Mid Cheshire hospital ward with a lady of generous proportions, inelegantly sporting grey leopard skin pj’s spare some sympathy, it’s probably me.
Following the shopping spree, I had the unexpected urge to clear the kitchen cupboards – yes, really! My approach to virtually all foodstuffs, fresh, frozen or tinned is that a best before date is simply a legal requirement. Basically in our household, if it looks OK, smells OK and tastes OK then it’s OK. However, even I conceded I couldn’t be so gung-ho with my health so I ought to go through the cupboards. We now have half empty cupboards. All this was clearly displacement activity to prevent me thinking about the impending day that was fast looming.
Let the games commence
On Thursday 19th we had an horrendously early start to get the Christie for 9am. Well if anything could go wrong it did, an accident on the motorway followed by interminable road works meant that despite leaving the house at 7:30 am we were still 10 minutes late. Although as I’ve already discovered, the notion of timings when it comes to blood tests is something that doesn’t actually exist. I raced into the dept to pick up my number for the queue to find they’d not long started as I was still number 2. When I was called, I was delighted to see that it wasn’t Nurse Whiplash from last time, however, I wasn’t filled with confidence when I realised the work experience girl who’d called my name was also actually taking my blood – I know, I’m getting old! Once inside the torture chamber she rather ineffectually put the strap around my arm and the temptation to pull it tighter was incredible. What followed was now becoming second nature, patting and prodding at non-existent veins I then saw her look at my hand. On pain of death was she using my hand, and I politely informed her that was needed for the cannula tomorrow so could she please persevere with the arm. It transpired, she could feel a vein, so we went in blind. Thankfully, and not too painfully, it produced the goods and that was over.
Back to the waiting room in readiness for the appointment with my oncologist. I got chatting to a fellow breast cancer patient. C was just about to embark on her third round of chemo and it was comforting to see, she looked quite healthy, sounded very positive and assured me it was all do-able. I’m sure it will be, the main question is, do I actually want to do it? This question was forced to be confronted as the main purpose of seeing the oncologist was to run through the whole process again (just in case I’d forgotten exactly what I was letting myself in for) and more importantly to sign the consent form. It did give me chance to ask about something I’ve been reading on the forums and check out the validity of. On the seven days after chemotherapy I need a daily injection of Filgrastim, this Granulocyte-colony stimulating factor (G–CSF) is a glycoprotein that stimulates the bone marrow to produce granulocytes and stem cells and release them into the bloodstream. One of the side effects regularly discussed is the onset of some pretty nasty bone aches and pains. However, Claritin (or Loratadine) is regularly being promoted as an antidote. As we’ve already learned though, every part of the process seems to have a side effect and I had no intention of complicating matters if it would be problematic, though at the same time I’m happy to give anything a go that makes life easier. A quick Google throws up plenty of anecdotal evidence for this working, including medical websites. My oncologist however had never heard of it being used. On the plus side though there was nothing to contra-indicate it being taken, so I’ll be undertaking my own clinical trials – watch this space. While on a roll, I broached the subject of requesting that these injections be undertaken by the District Nurse every day just to reinforce my complete inability to do this myself – especially as my new friend C had let slip her nurse comes every day.
The next stage was just to wait for someone to contact my local District Nurse team to authorise the first visit and get confirmation this was happening. Now just remind me, but this is 2017? This process is done by fax, FAX is this the dark ages? Clearly yes, and to make matters worse, after an hour sitting watching some dire TV in the waiting room I was told not to bother waiting as the said fax machine wasn’t working so they’d try later and I should have my confirmation copy ready to collect when I came back for my chemo tomorrow. While sat in the waiting room, we also witnessed the porter arriving with a trolley to take a gentleman to another department. The said gentleman had somehow hobbled off under his own steam, 40 minutes previously. While I am a great supporter of the NHS and am immensely grateful for the treatment I’m getting. It is not hard to see that some things are seriously wrong with either the staffing or the admin or both, and in the current economic climate, with a Government that quite frankly couldn’t give a damn I can only see it going one way, and sadly it’s not up.
D Day or should that be C day
Well here we have it, the 20th October and the official Wear It Pink for the Breast Cancer Now charity. If only that was the only thing marking the day. A marginally later start today as my appointment was for 9:30am. Only one motorway accident today, so we arrived with time to spare – or more time for me to worry. I can’t pretend I’ve not been worrying about today, but at least I’d soon be dealing with reality, which couldn’t be worse than my imaginings. Anyway I now had a little helper with me. In keeping with the wear it pink theme, I was sporting my little Breast Cancer Care Angel of Hope (as shown above). She was the nice little surprise I ‘won’ for being the 50th member of a local online Breast Cancer Support Group. She now lives permanently pinned to my bra, close to the offending breast – just in case it has any ideas about not playing ball!
There was already a queue when I went through the department so I left my OH to wait while I tangled with what appeared to be a row of self-service log in terminals. After duly proffering my name, date of birth, address, inside leg measurement and hat size the computer said NO and I was advised to wait in the queue. Good job I’d left my wingman waiting. So we finally checked in and was advised to go upstairs for my anti sickness pill. We duly found the stairs and opted for the chemo department when given an option and waited at reception. We were greeted by several people who were happy to advise us they didn’t ‘work’ on reception, before finally someone appeared from the toilets who was prepared to admit they did. I gave my name to be told I hadn’t registered downstairs, I assured her I had, but apparently I wasn’t showing green. While she ‘thought on her feet’ – her words, she eventually decided to refresh and lo and behold I was green. Under normal circumstances my less than patient self would by now be heading for a delicate shade of pissed off puce, but right now I was just relieved to finally be green. My chemo was scheduled for 10:30 and the pill was supposed to be taken an hour before and we were now heading for 9:50. It then transpired the pills hadn’t come up from pharmacy yet, so another wait. Eventually I was dosed and despatched to have a cup of tea for half an hour.
Back in the chemotherapy department I met my chemo nurse R. and was led over to my waiting chemo chair, a bit like a more upright dentists chair with added drips. I’d arrived with my chemo bag already packed for the long haul. Blanket, kindle, pillow, sweets, tablet, magazines etc. – never even unzipped it. It appeared the first three cycles of EC are ‘pushed through manually’ (pass the sick bucket now at the thought). Because of the damage they can do the veins the nurse administers and monitors it throughout. Getting the cannula is was less traumatic that I’d envisaged so it started well until I saw the syringes. They were enormous and looked more suited to being used on an elephant – gulp! So this was it – my chemo had started and I could hardly read my book and ignore R so, chemo bag put aside and OH happy to get a bit of work done we had a lovely chat. My angel must have worked her magic as had this been a blind date, he would have ticked all the boxes. Not in a sexual way, but in the fact that he enjoyed walking, had a half Spanish wife, had a brother who’d lived in Granada, had spent 4 weeks in Galicia over the summer and criss crossed the Camino several times. As I’m a hispanophile (?), who’s walked the Camino Ingles, is learning Spanish and has spent time in Granada and Galicia, the time just flew. I didn’t have time to think about what was being shunted through my veins and didn’t really feel it either – please let this be the norm. The only odd feeling came with the second chemo drug, when my sinuses felt strangely pressured and my scalp felt as though it had pins and needles. Once ‘done’ I was finished off with another shot of anti-sickness and some steroids and that was it. A quick run through of all the pills in my goody bag – 3 types of anti-sickness pills, steroids and the dreaded injections and voila finished.
To celebrate what had been a pretty good experience in the circumstances OH and I went and had lunch in the restaurant. I felt eating while the going was good, was a sensible idea. A quick trip to the loo before heading home also revealed that yes the chemo does produce red/pink urine – not quite as fun as the post surgery toilet duck blue, but another fun fact to add to the list. Once home, I even worked for a couple of hours. For some bizarre reason I also decided to defrost the freezer (yes I know I’ve had weeks to do this but c’est la vie). All emptied and just waiting for it to de-ice and I suddenly felt incredibly sick, and I mean sick. This state of affairs lasted for 3 hours and I can honestly say I’d not felt so bad since I downed a couple of bottles of red wine at my friends 50th (I should say at this point I don’t actually drink red wine but hey-ho). The aforementioned birthday party saw me still recovering at 4pm the following afternoon! However, back to the present and on the plus side I wasn’t actually sick and after risking a couple of slices of toast it did start to ease.
Chemo Day 2
Slept much better than I anticipated and got up in time to remember to take the injection out of the fridge and take a Clarityn pill. That was about all I remembered. I’ve heard of chemo brain, but wasn’t expecting it to hit so soon. Whatever caused it, I managed to read the instructions from the steroid pills and apply it to my anti-sickness pills. Great OD’d on day one and my days supply of anti-sickness pills gone! However a quick Google suggested I’d survive, a sentiment echoed by my District Nurse when she came to administer the injection. My Angel had worked her magic again there, no problem getting the nurses to come every day, so my prayers were answered. The dreaded stomach injection wasn’t as bad as anticipated either, but then I wasn’t doing the injection. The rest of the day passed without too much incident, although I did try to telephone my mother using my own telephone number – duh! Went for lie down in the late afternoon and my half hour rest turned into a two and a half hour sleep. Of course when I woke up I realised I’d forgotten to take my steroids, which had come with a proviso, ideally take about 2pm, and no later than 6pm. I took them at 8pm. This had not been my finest day.
Chemo Day 3
Despite taking the steroids late, I did actually have a reasonable night’s sleep and although feeling a bit spaced out, at least took the correct tablets this morning. My lovely nurse A was with me by mid morning and so that dread was out-of-the-way quite early. Happy to report no ill effects being felt from these injections so far. No problems with appetite either, so pigging out for England while I can. Lazed in front of the telly watching an old black and white film, which I haven’t done for years, and generally let the rest of the day drift by.
Chemo Day 4
Still feeling a bit spaced out, but otherwise OK. Last day of tablet taking today so one less thing to forget. A different nurse today and a minor crisis re the injections. It appears (despite 2 days of hassle free injections) I should have a ‘red sheet’ authorising the injections. Was I sure I wasn’t given one? Yes, quite categorically sure, could she try ringing A who’d been over the weekend. A quick phone call and whatever passed I had my injection, for today anyway. I have copies of the authorisation sheet faxed by the The Christie to the District Nurse team, along with a green card which clearly sets out the dosage, method of administration etc., and that’s all I’ve been given, so suspect this will need to be pursued for the next cycle.
As I felt fine I even decided to go to work which OH was delighted with. Though I did have to restrict myself to pretty mundane, book-keeping and processing duties as my brain did feel as though anything more taxing would have been a step too far. It felt promising though, I was expecting to be feeling wiped out, following the chemo – maybe it wasn’t going to be too bad after all – famous last words! Almost literally, as my voice is starting to go.
Chemo Day 5
Had a rough night last night and didn’t sleep well at all. One of the side effects of these delightful treatments is constipation and mine is starting to make itself felt. My stomach feels distinctly bloated and ‘off’ and I feel very queasy. I was very wobbly when I got up and decided an anti-sickness pill ought to be added to the morning routine. A different nurse today – first question – ‘Have you got your red sheet?’ – no, I’ve never had one. ‘Well I can’t administer the injection without one’ – Aaaaaaggh. Could you please ring A. Another phone call and whatever passed another injection. Today was most definitely not a day for doing much as my neck and shoulders were also aching now. So back to bed for a couple of hours. Despite the queasiness I have been managing to eat, but sadly seem to be losing my taste for tea – the one thing I’d feared – I love my cups of tea.
Chemo Day 6
OH away in Yorkshire today, so an early start this morning. A pretty rough night, but apart from that, I feel OK. My nurse arrived to give me my injection and miracle of miracles under her arm, a green file, complete with a RED SHEET!! Though I felt a bit queasy, a steady supply of cream crackers and anti-sickness pills kept anything more drastic at bay. I even managed to work for 4 hours. No signs sadly of anything moving on the bowel front which is getting a bit disconcerting.
Chemo Day 7
Urrgh, the worst night so far. Constant stomach cramps, pains and nausea. I felt like I’d been awake all night. I know I was certainly up virtually every hour in a vain attempt to elicit some movement in the bowel department, which despite regular dosings with Dulcolax is refusing to play ball. A conversation I think, with my nurse, after the ‘do you have your red sheet’ conversation – no fun when you’ve got one! Well – who knew – severe constipation can cause nausea. If only I’d known that before taking all the anti-sickness pills, whose main side effects are – yes you guessed it – constipation. No wonder nothing was moving, I’ve been sabotaging my own bowels. So I think I need to have some clear and regular plan in place to get and hopefully keep things moving from now on. So it’s prunes and orange juice first thing every morning from now on.
I had a bittersweet delivery in the post today. My chemo hats and bandana’s arrive. While I have every intention of putting my extensive scarf collection to good use, I’ll need something to keep my bald little bonce warm at night once the inevitable happens. I also chose some hats to hide under when I step outside, and some pre-formed scarf/hat combo’s to make life easier.
Chemo Day 8
Hallelujah, we have movement!! So a double cause for celebration, as today is my final injection. I think I can say that stomach injections are not my favourite things, but so far they’ve been fairly painless and no bone aches and pains so all good. The absence of an early morning visit from the nurses, lovely though they are, means I can quit with the alarm call and have a lie in if I want one. One main thing on my agenda is to contact my Breast Cancer Nurse. When I last saw my oncologist she mentioned she would give me a prescription for mouthwash, however nothing was in my goody bag. At the time I didn’t worry too much, but now my mouth is getting sore and I’m getting an ulcer on my tongue. While I’ve been using what we had in the house, I’d rather have what ever heavy-duty stuff they throw at chemo induced sores and ulcers. After several phone calls, during which I decided I didn’t really want and hour and a half journey to pick up a prescription if she was able to ring my doctor to request one and, better still, it appears it can be delivered direct to my local chemists – yay!! I can’t believe the things I can get pleasure from these days. Life really has started to revolve around simple results and unexpected pleasures. The latter came with an email from Elemis. A couple of our oldest friends had sent me a gift voucher instead of flowers. They certainly know how to make this skin care junkie very happy.
Another afternoon managed at work but by tea-time, the pleasures of the day started to dissipate when I was struck with lower back pains and spasms. What the hell was causing that. I was experiencing classic pain symptoms from the Filgrastim injection but why now, surely it doesn’t take a week to kick in. Oh bugger! guess who forgot to take her Clarityn pill this morning. I’d clearly been lulled into a false sense of security, by the complete lack of any side effects from the injections. If this really was a result of forgetting the tablet, then I dread to think what I’d have gone through without it. I guess I’ll have to wait until the next cycle to see what happens but I won’t be forgetting the Clarityn again. A late Clarityn pill, some paracetamol and a heated wheat cushion took the edge off it – eventually.
Chemo Day 9
Thanks to the back pain, a mixed nights sleep. Another queasy day, so looks like I’ll be ploughing through the remainder of the cream crackers, I have to say these have done the job, where the ginger nuts failed. I think an easy day might be in order, especially as OH is on shopping duty. I did nobly volunteer to go with him. But he’s getting more paranoid than I am about making sure I don’t pick up any infections, so I get a pass – hooray – another simple pleasure!
Chemo Days 10 – 13
I woke up on Sunday after the best night’s sleep for over a week and felt normal. No aches, pains or nausea. I can live with a mouth ulcer, this is the best I’ve felt since the chemo. I spent the day scheduling my Throwback Thursday reviews and prepping some Five on Friday posts. Almost a regular Sunday. I’m delighted to say that the days that followed continued in the same vein. While I’d anticipated a dip as I know this is the period that I’m most likely to succumb to infection, I actually feel the best I’ve felt. Almost better than normal, I’ve managed 3 reasonable days at work and finally got around to composing this update. I don’t know whether this is usual, or whether it will repeated next time, but I’m delighted to feel so much better than I thought I would before this process started. With so many fears about side effects and problems, I was prepared for the worst, but honestly, I feel the aches pains and nausea were more uncomfortable than disabling. Maybe I’ve been lucky, in which case I’m thankful, not to mention grateful and I hope I’m not setting myself up for a fall, but as it stands now this is more than do-able and I hope it stays that way.
If you’re still with me at this stage – thanks for sticking with it. This time round I really wanted a true reflection of how it had gone for me. I know this can only reflect my experience, but if anyone else is embarking on the same, just go with the flow and take each day at a time. Don’t worry about what might happen, just deal with what is happening. Be kind to yourself and make the most of the good days.