My feet of clay are planted on the ground as so many of the symptoms of the diseases I am struck down with are hidden…However, another green shoot of hope today at the Eye Hospital. My retinal damage (which I have been living with since 2006) has remained stable and the cataracts that I “grew” during chemo have not developed further and, apparently, are “not worrying”. Not sure if that means that I am not to worry (fat chance!) or that the clinicians aren’t worrying or just that there are no worrying symptoms to cause further investigations or possible treatment. Whichever…it was good to walk out of the hospital without some new dog tag around my neck or any new diagnoses (or unfamiliar words) to take home and google!
I am hoping that this augurs well for 2014. Sadly, the eye issue is not yet closed as I still have to see the specialist about the other problem that was picked up during chemo -saccadic eye movement disorder. That appointment is still 2 weeks off and who knows, perhaps that will now be “not worrying” either…
Somehow taking charge of these eye problems and my spondylolisthesis, for which I am now going back on hospital waiting list makes me feel better about everything. However, I know that the oncologists have first dibs on me and whilst I may think I am in control…I know that is not truly the case – but good to have these delusions.
Mens sana in corpore sano
From the byegone days of learning Latin I seem to remember this translating as something to the effect of a healthy mind in a healthy body – whether that is that you need a healthy body to have a healthy mind OR a healthy mind will (help) make the body healthy (by knowing what you need to do to make it healthy perhaps?) is anyone’s guess. Not sure where this random thought has sprung from other than ….
Just when my brain seems to bounding off the starting blocks post-chemo – my back/leg problems are gobbling me up with a vengeance. I suppose it was inevitable that the spondylolisthesis would not just vanish but I did wish and hope that it might have done. I have been doing the prescribed and recommended exercises throughout the chemo ordeal …and beyond…but I am now feeling the sciatic pain increasing on a daily basis in both legs rather than just the one I started with.
What to do? Do I go back (!) on surgery waiting list at orthopaedics for which I was at pre-op stage when the cancer took over, courtesy of its life threatening priority, or do I continue with the exercise and osteopathy? I suspect I may need to do both. Is the NHS truly seamless to suggest having breast and back surgery at same time? Perhaps it is just impractical… I would then be unable (I imagine) to lie on either my back or front…so would have to get active immediately! Hmmm…that’s something to ponder
Who knew that all these volumising hair products would (or even could) work so quickly and so well….on my legs! No substantial progress on my head hair but legs – hey…watch them and weep! Fingers crossed that I am not going to have a beatific display of chest hair shortly…
I know I asked/prayed/incanted/wished for my hair back. Guess the moral of the tale is to be careful what you wish for!
I am feeling more like a “normal” person today…normal of course being a relative term as many of you will be bemused (or laughing) at the idea that I had thought I was “normal” at any point – so be it – let’s say normal for Wendy!
Before I start ranting that I am fit and well – all my statements probably need some qualification – it is more that I am recognising that some brain function is returning. I remain depleted but seem, overnight, to have accessed the ability to rail against it. I swam again today and have managed to gain more ground – from 10 to 14 lengths. This small increase feels so significant and I don’t care that my legs have been shaky ever since and I am ready to go to bed before 8pm…running on empty somehow feels good or better…
Next staging post I await is the return of not only my head hair…for which I long on an a minute by minute basis…but also the return of some nasal hair as I have, for months, been beset by bouts of constant sneezing and unpleasant dripping. Who knows whether this is the cause or not but I have decided without any clinical assistance, that it must be!
If the hair volumising products don’t work at the speed I require them, I am wondering if any of the following might work:
- a vigil
- a trip to Lourdes
- praying (or is this implicit in the previous option?) – in which case maybe I would opt for a collective incantation
- hair extensions (how much hair do you need for them to be able to get attached and stay in place?)
- Miracle-Gro or Grow bags
Let’s see what tomorrow brings.
In a week when the more serious side of my health has been examined, I have moved very quickly into the area that is concerning me the most of all…My hair, or lack of it.
I have cunningly invested my week in procuring the best “volumising” product – and although my hair, at no time, could be described, or could have been described as fine and flyaway, for current purposes that is the category for me. I have read the full sales information on many, many, many products before making a decision about which product is “me”.
So…the selection is “Aussie Aussome Volume Shampoo” – I have fully invested in the blurb below and am inspecting my head several times daily awaiting the awesome or even aussome results!
“Uplift your hair and your spirit
For fine, limp hair
With Australian Hops Extract
New formula with Aloe Vera
Our unique lightweight formula, with extract of Australian Hops, leaves your hair with wonderful fullness and body. Big hair is beautiful. Fair enough, beer’s probably the first thing that springs to mind when you think of Australian Hops, but there’s a lot more to these little fellas than meets the eye. It’s believed that the proteins in the hops coat your hair and help build it up.
Frankly we think beer is a waste of good hops”
Feel free to suggest other miracle products if you know any – I am game to try anything!
I was back at the hospital yesterday to be told that my scan results are “excellent”….not a complete elimination of every trace of the cancer (as I knew) but the best results possible. I was told that “excellent” is a standard rarely used for these scan results…so it’s very good news.
I now have to continue with the long-term treatment and hope that it sustains the position…then surgery. The doctor I saw yesterday worked on the Cleopatra clinical trial for pertuzumab (the pricey…very pricey new drug I have been and will continue to be given) and he was extremely positive about it – I have been very lucky to have been prescribed this very new treatment and if I had been diagnosed even a month or so earlier than I was, the drug would not have been available for me to use. I do take on board that the staff of the oncology department are an unusually positive lot given the speciality and whatever the news but this has to be a golden nugget moment! So..hang the “incurable” diagnosis for the moment. For once I am in the right place at the right time with the right doctors.
It’s a very good Monday…
It is time to ‘fess up to the fact that, along with my own comestibles, I have also been receiving those meant for other locations/customers. I do follow “due diligence” and ring the store each time I get an alien bag but am told to keep the items…In the past month or so, I have received several bottles of barbecue HP sauce, 4 jars of mint sauce, paracetamol galore, frangipane tart, cream crackers, variety packs of crisps, Pepsi-Max, jelly and a variety of “oddments” that sadly are never the items I forgot from the shopping list. Today, however was the best…a bottle of champagne and it was meant for me…a January “gift” from Waitrose for spending over £50…whoo-hoo! That seems a good portent for the week.
I also managed to increase my swimming today. Just (and only just) managed 10 lengths – all very positive….AND the fluff on my head seems to be growing…
Tomorrow, however, is back to the hospital – treatment followed by appointment with consultant …so a good few hours back in the clinical setting. I find it so odd that I can’t feel what’s going on with the cancer – and have absolutely no idea if it has been reduced to oblivion by the chemo or if it is merrily spreading itself around my body without me knowing. I just have to rely on the scans and doctors to tell me what I hope will be good news. However positive though, I know that at some point it will pop up either in the same or new locations so it still remains tough to get overly positive…
Good news is that I seem to have fully recovered my sense of taste and am starting to build a little stamina…Swam 6 lengths last week and 8 lengths this week (wished it had been more but it was progress) and I have walked further than I could even dream of a few weeks ago. Before we get too excited this is still only a minor distance but all very positive.
Saw my GP yesterday who has signed me off work for another 4 months. I remain unsure whether this is good or bad news BUT…given that the small amount of exercise I have done has required at least 14-15 hours sleep afterwards, I guess I am not ready for the office just yet.
Next week is treatment #2 and my appointment to get the result of my pre-Christmas scans. I am expecting these to be the best scenario (ie lots of cancer shrinkage post- chemo) so I hope they are just that!
Meantime living in Oxford is a challenge as water levels continue to rise. More and more of the city is becoming waterlogged. Two of the major access routes to the city are closed due to flooding which, as you can guess, is causing a gridlock-like experience on the other routes especially as all the buses seem to have been diverted down our main road (which is one of the roads still open). Dry today, so let’s hope those conditions continue and the waters start to recede.
I can’t quite believe that this is my 81st blog and I have had over 17,000 hits now …Thanks for following me!
Just before the final Christmas crumbs are hoovered up, I feel the need to return to the Christmas crackers theme. This is purely on the basis that I have concluded that laughter may be the best way to deal with my tenacious cancer…
So…2 of the more “choice” tasks set in this season’s Christmas crackers (you will note that it wasn’t the jokes that caused the mirth):
- Name your favourite (?) Christmas song?
“Favourite” may be rather misleading – I read it as the Christmas song that either still amuses or which you can actually stand to hear at the festive season…whilst many (not in my crackers group) may have chosen the goosebumps moment when the voice of a sole chorister welcomes in Christmas by singing “Once in Royal David’s City” on Christmas Eve at Kings College Chapel, Cambridge. My choice was not quite this sonorous reflective moment – it may be (rudely) considered more lowbrow and was Boney M “Mary’s Boy Child”. Naturally much laughter accompanied this selection but hey…who ever tires of Boney M? (No replies needed!)
- “A conversation opener” – Who are the 10 people you would like to sit next to on a long-haul flight?
If I was anything to go by, this brings any conversation to an abrupt halt which then dissolves into laughter as you try and give one possible answer never mind 10. Given a choice I would rather have one of those bed type seats and sleep my way through the flight….but with several days reflection I have come up with some options….
Stuart and Patrick of course at #1 slot…followed by George Clooney, Matthew Shardlake, Julian Clary, Jennifer Saunders, a pairing of Nigella Lawson with Nigel Slater on the other side, Carol Drinkwater and Frida Kahlo. This does, of course, not mean that I don’t want to travel with friends and family – just that I thought it was supposed to be more creative (and thus more giggle conducive than that)
To think (and this is my final Christmas thought)…there are probably people writing the contents of next year’s Christmas crackers even now…
Having seen the New Year in with style – or certainly with copious bottles of fizz, lots of food, good friends and a fabulous firework spectacle, reality now kicks in.
Good news is that my sense of taste has returned and coffee is back on the menu as a thing of joy…however, other things that were on the horizon to be done, now need to move into the foreground. Most notably, stamina. That hasn’t exactly featured in my kick-start to the year, having struggled to get out of bed much before lunchtime this week….BUT I am up earlier today, have done a little walking each day and plan to get back in the swimming pool today as well. I suppose it doesn’t matter how long (or short!) the day is, so long as I am progressing. Not sure quite how this works if I am exercising more and regaining some brain function yet need even more sleep to counterbalance the activity…Maybe it just is as it is and may just take time…more time…more waiting…just my bag!
Would like to steam ahead with writing this novel I have had in embryo for considerably longer than anything else I have ever heard of, takes to gestate. Thinking about it and actually getting cracking seems impossibly difficult but I am determined to make a start within the coming week or at least, before I can formulate a new set of excuses of why I can’t…
Some brain wave activity is now replacing my “wading through chemo fug” which has not been an entirely positive experience. I am now seeing the reality of what I have to face this year. Will the treatment work or not? Even if it does work, (and what does “work” mean?) I think the baseline truth is that it is only buying me more time before the cancer progresses. However positively or negatively you look at this, it casts a sobering shadow over the year and what I might want to do sooner rather than later with whatever brain capacity and energy I can muster.
Many things spring to mind but the most obvious are that there’s plenty of shopping yet to be done (of every kind!) and of course the pile of books I want to read never gets any smaller….