Radio silence has been because I have had a few relatively normal days. Relative to what…? is a good question on my rather skewed health compass, but, suffice it to say I have been up and about and seeing friends.
I spent all last night having the biggest bout of extended nausea I think I have ever experienced, which filled most of the night. Is this chemo related…10 days later? I have no idea, but if not it may mean that I have picked up some sort of bug which I suspect is also not good news.
As if this wasn’t enough to disturb our night, the cat decided that if I was awake then maybe she could provide some entertainment and brought 2 mice “to play” in our bedroom as well, thoroughly disturbing any rest Stuart might have had before one of the busiest weekends of the year in the bike shop.
Sickness seems to have passed for now but anxiety levels have risen as somehow I feel I have crossed the Rubicon I would rather not have crossed. I had been quite enjoying the no sickness precedent.
Body feeling more robust so the obvious choice was a lunchtime jaunt with retail therapy. Just forgot my brain. Made gallant attempts, dithered, tried things on, and schmoozed like the expert I am. Then went and had lunch (lovely watermelon, feta and tomato salad) and forgot all about the potential purchases as I got distracted by new things which I then instantly forgot again.
This is a new sport to add to the online shopping I pretend to do – regularly filling a basket but not checking out so my shopping urge is tamed…(OK this is 1 in 5 times – the other times I do actually check out). I am sure that the shopping gene cannot be eradicated in 2 rounds of chemo and I can’t see any mention of it in the piles of information I have…
Oooh there’s the doorbell, forgot that I had ordered a whole new host of headwear (in all “my” colours) before I went out yesterday morning!
I am improving…today I got up and got dressed and ventured outside…Progress indeed! Albeit I was looking like an extra from Fiddler on the Roof in my fitted headscarf. Right ethnicity, but maybe cobalt blue is not quite the colour of the shtetl….Luckily (for Oxford) I was not well enough to attempt the singing and dancing routines just yet…maybe something for everyone to look forward to (?) in week 3 of the cycle!
New symptoms abound each time I open my eyes – heat type rash spreading like a fungus across my chest, my gums no longer seem to fit my teeth properly, I seem to be coughing up extraordinary things and, what little hair remains, seems to be spreading itself around the house like we have an invasion of small furry things…Fortunately, no symptoms that yet send me direct to hospital without passing go…so obviously lots of new experiences still lie in wait.
Regular life kicked in today as I heard of the death of a close friend’s husband, Terry Vickers. He spent his working life caring for others as a GP. Fortunately the NHS looked after him well in recent weeks/months – with its inevitable idiosyncrasies that always helps us chuckle in the bad moments. I feel deeply saddened at the loss of such a lively, friendly, accomplished, articulate, secular and empathetic northerner who I was proud to know and call my friend. My life is all the richer for knowing him.
Yesterday and today feels like every drop of moisture has been sucked from my body by an alien force. Skin, hair (such as I have), lips and mouth feel parched, completely non-porous and do not seem to be letting any amount of lotions, potions or fluids (of any sort) solve the problem…Not only coffee tastes odd but water too…which seems an ordeal too far at present. No cafetiere to accompany the Saturday Guardian seems an evil trick to play on me.
I cannot get comfortable – lying down, sitting, standing are all equally difficult and this has re-started my back/leg problems. I am pushing myself to do the pilates exercises which I know will ease the problem but all I want to do is curl up and sleep the sleep of our cats! I wonder how on earth I will possibly get through months and months of this…maybe I will “evolve” and get “used” to it?…That’s a pretty scary thought.
A whole toenail seems to have just popped off – is this through lack of moisture or something else? Every muscle seems to be expressing its disapproval of even existing and I feel like a try-out for some sort of cruel version of the 7 Plagues (of cancer? or chemo?).
For the first time, I check my symptoms against my hospital book but I don’t have any “red alert” symptoms….Whilst this could be seen as a good thing it also alarmingly flags up that things can (and probably will) get a whole lot worse before they get better…
Have now had first round of new chemo and I would say so far so good, except I have precious little hair. I still persist in washing and drying but this now takes seconds rather than the best part of half an hour, now I have all the time in the world to do it….Have moved into chemo headgear and am feeling very self-conscious about leaving the house. I know it’s daft but that is how it is…Fortunately, no sickness to date just chronic restlessness – can’t seem to focus on anything for more than moments at a time.
Today, Paul comes round to even up my half-Belsen look into something more regularly shaped but inevitably there will be even less of it later today. I have to hold onto the fact that if the treatment is getting to my hair then hopefully it is hitting the cancer in the same destructive way.
Telly has decided to go on the blink and we now only have 11 channels (rather random ones at that!) – no ITV, no channel 4 and hardly any freeview channels. Thank goodness Great British Bake Off & Celebrity Masterchef are on obtainable channels. After endless attempts by us and, those younger than us, we have given up and called in a technician who should be able to fix the problem next week. I am sure we can cope!
We had the grandest of grand days out yesterday. Another of my amazing band of friends took me and Sal (my resident carer…?) out to the Cotswolds. It is amazing what can be fitted into one day . We managed shopping and a pre-afternoon tea (and lardy cake) within the first hour – then sped over to Lower Slaughter Manor for champagne afternoon tea!
Tea was just fabulous (lunch, dinner and accommodation looked pretty special too…but that’s for another time). When we had finally consumed all that could possibly be consumed (sitting in the grounds), we surveyed the “pigeonnier” which was larger than probably all of our houses put together and seemed to function (so far as we could smell) solely as a pigeon toilet block. We left in style (?) the Fiat churning up the gravel with its roof open as we joined Johnny Cash at top volume in “Ring of Fire” as we swept out of the village – a veritable Ab Fab moment!
Today was rather more serious as it was back to the hospital for first of two chemo doses this week. Fortunately I did not suffer from rash, breathing problems or severe back ache so at least I can tolerate this element of my new cocktail. Will see how I respond to part 2 tomorrow. If things go as planned (although I hear my mother yelling out “Give God a laugh..tell Him your plans” – but we’ll ignore that for the time being) …last chemo SHOULD be 3 December..but that’s a big IF…There was a woman a few beds over from me today who was on Cycle 15…15!! Let’s not go there…
Saw a colleague from work across the way who was there with his wife. Strange meetings for strange times but always good to see a friendly face. Came home to more friendly faces including another of my writing group delivering “2000 and Thirteen” (Mel Brooks) CD for amusement tomorrow via my i-pod if I can work out what I have to do…
More anti-sickness drugs have been dispensed and I have a new one for the medicine chest this time. It seems that I may get a sore mouth and/or mouth ulcers so have a gargle which acts as an anaesthetic in readiness.
Onwards and upwards
I now have a rather large and very irregular bald patch on my scalp and creeping up my neck which is spreading at an alarming rate…I need to have a shower but fear the water will rinse off all the remaining hair – what’s a girl to do? There is of course the dual problem of losing the hair and blocking the plumbing.
I know that Paul, my lovely hairdresser will come and prune me properly but have put off making that call and now think he may be on holiday…
I have also thought of draping myself in my very friendly long haired black cat , eccentricity doesn’t even enter the equation, but not sure she will stay put all day…
This really isn’t a good look…I am not a drapy (?) scarf kind of gal nor can I pull off wearing any sort of hat with any sort of aplomb…April sits ready but is yet, untrimmed, and it is still quite difficult to see through the fringe…
Not a good day…and the treatment hasn’t even started yet…AND I’ve got a spot on my face!
Fridge was looking a tad depleted (in my eyes) so I decided to do an online shop. In recent months I have made a seismic move from Sainsburys to Waitrose then to Ocado…for quite obscure reasons…The Ocado “men” are named before they arrive – so I already know to expect Mark in the strawberry van in an hour or so. Mark will not only bring my shopping to the door but will also carry to the kitchen and put freezer stuff in the freezer for me. Waitrose, Sainsburys et al do not provide quite the same level of customer service for those with bad backs as well as my other ailments. (Ocado also “helpfully” suggest products you might like, as you browse, based on previous choices – I find it very odd that champagne & smoked salmon keep coming up…but they do always seem like a good idea!)
Anyway, I did the shopping yesterday – using the list of things we had run out of. Only once shopping was completed and deadline past did I realise how much shampoo I had ordered for myself. It was 3 for 2 so why not? I can now think of good reasons why not – such as:
- I have stopped washing hair as more comes out than stays in
- I will not have hair to wash at all in a few days
- April has her own “special” shampoo
Oh well…I am well stocked for the new growth and will be able to tend the new shoots, as they come through, with a premium product!
Having some fairly random thoughts whilst gearing up for new chemo regime.
As I was putting on my (very expensive) face cream last night, it struck me that another reason for needing to deal with this illness, is to ensure that I haven’t wasted my money over the years. I need to know that the lotions and potions investment worked and that I will remain wrinkle-free into old age…
I start on the new designer chemo on Monday. In case I have a bad reaction to one of the drugs they give the first cycle of this cocktail chemo over 2 days, so if there is a reaction, they know from which drug the reaction stems. Think this is for cycle 1 only. I am unsure what happens if there is a reaction or what that reaction could be. Sadly, I am sure they will put me in the picture soon enough!
My sciatic pain has been bad again and yesterday I went to see Clive, our local osteopath. If he can help me manage the pain, this will be a great bonus…I return for my second appointment on Wednesday.
Meantime, I am preparing for the coming weeks by lining up a variety of entertainment. Million Dollar Mermaid (Esther Williams) sits in readiness by the DVD player…Kindle has been charged up and loaded and books pile up beside my bed…I am trying to get my head round the technology of an i-pod (which my lovely colleagues in the office bought me). I have never had such a toy before (don’t forget this is the woman who only turns her mobile on when she is expecting a call!) and it seems (in no time at all) to have turned me into the village idiot . Fortunately, I have a young person in the house who is native to this technology and has set it up for me. I now have podcasts galore, talking books and music at my fingertips once I can work out how to turn it on!
Stuart has been mobilising too. Last week we seemed to be getting daily deliveries from white “vin” man – so no chance of us running out wine for the time being! Fridge is also well-stocked so all’s well…
I feel surrounded by a whole sea of love and support from all of you out there, sorry I have not been able to respond to all of you individually but it is really carrying me along.