Any type of sporting activity (doing not watching) has never been my bag…I refused to climb a rope at a young age because, even then I knew that I was never going to NEED this skill so why waste the effort trying? I was still not even pretending to understand the rules of lacrosse 8 years after I received my lacrosse stick and its chaste appearance became a true badge of honour. Trying to get me running round a running track was impossible. You really can’t “force” anybody to run or, for that matter, do long jump or high jump….Nonetheless, cancer seems to have changed my motivation to exercise and today has been my Olympic podium moment….(of sorts!)
There I was at the gym (again) still trying to figure out why the clock ticks so slowly, how my legs could still be moving when my heart was in free-fall and just how red my face was when AT LAST, my 15 minute ordeal was over and I fell off the odious cross-trainer. One of the personal trainers standing nearby pointed at me and declared in too loud a voice “Now that’s how you should all look if you have been training hard”….As I already had a bright red face, I couldn’t blush any further . Do I really want to be the icon of a hard workout? N’ah….jeez….surely it must be time to go back to the swimming pool where all the activity happens under the surface.
The swimming pool still holds its own particular problems of what swimwear I should get (click here to see previous blog on the swimwear dilemma which as yet remains unresolved!)…You may or may not get linked to blog “A new way of getting dressed” – when testing this, sometimes it links, sometimes it doesn’t….blog working in the same way that I am!…
And so…I sit, idly waiting for the phone call from the Dermatology Department who have their “special” meeting about me today. I imagine it being held, rather like I imagine, defence of the realm COBRA meetings. In reality I suspect it is a few people squeezed into too small a space, scratching their heads – unsure of what is happening and what they can do with me and my leprosy…and after that maybe they will forget to phone…
Having done the tour of all the Oxford medical facilities this week, the consensus seems to be that I am a “challenging” patient (in an interesting kind of way, of course! Or do I mean….of course?)
My skin condition seems to be causing waves through the Dermatology Department to the extent that are holding a special meeting about me next week. Despite the antibiotics, 4 different creams/lotions and soap alternatives, The “leprosy” (my tagging, not theirs) continues to take root and spread its devious route across and down my arm. Early results from the biopsy plus other tests are starting to point to a drug reaction (to my cancer wonder drug – pertuzumab) although this will be decided more definitively next week, when something else may have grown from the biopsy. This wasn’t the medical terminology used but my raw understanding. I had more photos taken on the consultant’s phone. I couldn’t help but verbalise my thoughts as she did this again, that she must go home and say “Guess what I’ve been doing today?” which reduced us both to helpless laughter….(and made me think that it must be exactly what she does!).
When I tried to make a follow-up appointment and said that it had to be with the same doctor – because there were better pictures of the leprosy on her phone than those done by medical photography – the receptionist just sighed as if she had heard it all now! Meantime different and more potent antibiotics for at least 6 weeks….
I fear that oncology – if faced with a drug allergy – will just tell me that it it is a small cross to bear and I will just have to live with it. “Living with it” for me, means itching and consequent scratching like an orangutan alongside the unsightly look of “leprosy”. (Which reminds me of the ancient yak’s tail fly swatter I saw at the Ashmolean this week – I think I will soon “need” one of these…)
The back end of the week saw a return journey to orthopaedic treatment after the cancer hiatus so… spondylolisthesis revisited…What a lovely team of people I had looking after me for my spinal nerve blocker injection. They were kind, professional, informative (even telling me that the steroid would raise my blood sugar for a couple of days) and interested. I lay on the couch in my paper knickers (which I had tried on both ways round several times and still not discovered the “right” way) watching X-ray pictures of my back with a multi-disciplinary commentary. Today I was “challenging” as my vertebra was so collapsed, the doctor was unsure whether he would get the steroid bearing needle through the gaps. He was astounded how I could possibly be as mobile as I am…The discussions as the team prepared for the injection were constantly interspersed with a cheerful “but we remain optimistic”. The procedure was completed successfully as the extraordinarily acute sciatic pain caused down my leg apparently indicated that he had hit exactly the right spot…Great!
As I dressed, I realised why I was told to wear loose clothing…as it was almost impossible to persuade my leg to move into trouser leg as required, and I only got it into loose fitting elasticated trackie pants by sitting and manoeuvring it there manually…Walking back to waiting room and my friend was even more of a problem as my left leg remained completely numb and felt like a mix of clay. pins and needles and cramp for some hours. It made me act rather like a circus performer as I went one way and my leg went another…
I have now had my new right breast for a week and I seem to be using it more for entertainment value than for its dedicated purpose. I have slipped it in and out my bra to show any interested parties (and they have been many); discussed whether prostheses come in different colours (only putty shades appear in the catalogues); been encouraged into a bit of random body shaking to see if the prosthesis shakes in the same way as regular boobs and…as if this wasn’t enough I have been caught out at the front door holding it in my hand and having to act in a nonchalant way…
I have spent many a happy hour scouring the catalogues in a consumer frenzy. It is akin to a first trip to Ikea – discovering things you never knew you needed until you saw them – how can I now manage without “Been-a-boob” – a designer beanbag that comes in every size? (for £29.99!) or “Bodicool Wave” for £148 or even “Active Ocean” for £72…This isn’t cheap retail therapy and I’m only at the bargain basement. Think I would be happier to be without any “natural bounce”!
Distractions aside – my heart seems to be working OK (according to latest echocardiogram on Monday) – “working out” (?) in the gym tells me otherwise but happy to bow to the electronic judgement. Although I am steadily building up my time on the cross-trainer (and similar) I am convinced that minutes in the gym are measured in a different way from minutes outside the gym. I try to distract myself and not look at the timer constantly and, when, what seems like 10 minutes has passed…I look down, only to discover that barely 90 seconds has elapsed…I am obviously not at peak fitness just yet!
I nearly missed out on my regular cancer treatment dose yesterday as there was some worry about giving it with my “leprosy” (which is coming along nicely…) but I have another appointment with the Dermatology later today so could possibly have some answers…will Dr Champagne have a diagnosis…or even better, a cure…?
So…the conveyor belt stutters forward…
Yesterday into the office (forward planning on a return to work) – tomorrow the world…? Unfortunately between a and b I am having to learn to get dressed. I have acquired a new right breast – in gel form, that in theory, “just slips into your bra” – the mastectomy, pocketed bra, that is…it seems rather like potty putty to me – if you know what I mean?
This new body part does not have a name (other than prosthesis!) – just a serial number, which seems a shame after the personification of the wig catalogue…maybe it is thought that having a gel boob is the route to recovery when things don’t need a name, just a number…Shapewear has never felt so personal! It has its own bedside box where it has to rest overnight to regain its shape…I am not even going to try and get my head round that concept!
Inevitably this “next stage” morphs into a further retail necessity for other “breast forms” and “shapers” alongside “pocketed” lingerie, swimwear, “accessories” and lounge and leisure wear (whatever that all is…..) At a first glance (4 catalogues and 6 websites) the swimwear generally seems to be very loud. Whilst I remain unafraid to shoot my mouth off about the breast cancer ordeal, I am not sure I want to wear the shouty swimwear to match my mouth…Still..as I still have some weeks before I can swim, I can webpage shop a little longer.
A day I never thought would happen again, has happened…I have had a haircut! OK…a “haircut” may be pushing it a bit, the whole process took less than 60 seconds BUT scissors were applied to my thickening short hair to beckon it into a “style” !
I was starting to think that maybe I might now pass as someone who had chosen to have my hair like this rather looking like a remnant of chemo. However yesterday I chanced upon 2 locals who I hadn’t since before the past year’s drama. They both instantly grasped I must have cancer and asked about it, so maybe a way to go yet…
Next couple of weeks have a few milestones. I am going into the office to discuss a possible return to work, which seems rather scary…How do I possibly know if I am ready?
Another highlight is my appointment for fitting my prosthesis. I am quite blasé about my current cushion-like right breast which I can over or under-stuff to order and, on a more practical level, can be thrown into the washing machine, willy-nilly! It already feels very “me” and suits my lifestyle! Have to say that this detachable breast business is so much better than the previous permanent variety! Why do I need something more solid and heavier to hulk about? Maybe I do…alternatively, perhaps it will sit like “April” the wig (that was never worn) in the cancer corner (rather like the naughty step) as a reminder of what has happened. The display options could be more limited but I am sure I can come up with something…
Then I have “the week of many hospitals” which reads rather like Solomon Grundy* although with (I am assuming) a better outcome
- Monday: echocardiogram
- Tuesday: my regular intravenous cancer treatment
- Wednesday: back to dermatology
- Thursday: back to orthopaedics for nerve blocker “procedure” on spine
- Friday: now…I am not sure…I seem to have something written in my diary that makes no sense at all – so if anyone has any ideas what “BB Bra” could mean….
…and there is also the gym with its stamina promise whispering in my ear. I remain confused as to how anyone can “rest”.
Born on Monday,
Christened on Tuesday,
Married on Wednesday,
Took ill on Thursday,
Worse on Friday,
Died on Saturday,
Buried on Sunday.
That was the end
Of Solomon Grundy.
Since I last attended the Dermatology Department a few weeks ago – the wild and rampant rash on my right arm has disappeared. This has been replaced by a hive of activity on my left arm which resembles (to my unprofessional eye) leprosy (my experience of leprosy informed by Ben-Hur…and I have seen it many times, so I should know!) and the surface of Mars interspersed with weeping pustules. Not a good look, I know, but can be hidden by carefully appointed sleeves…
When I had to raise my sleeve to consultant 1 there was a long silence as she returned to the computer to check the results of the previous biopsy. Lots of touchy-feely stuff and a puzzled face. It appears it could be one of many things but having the whole gamut of possibilities in one place is most unusual….(I am the stone, scissors AND paper of dermatology) Could it be fungal? bacterial? viral? or indeed a drug reaction? In came consultant 2 who was similarly astounded…but she took tests from a couple of pustules and scraped my skin into a test pot and scratched her head…OK…over to medical photography and then on to consultant 3 for a biopsy…Who knew a morning could be so much fun!
Think I have, as a result, now become the Department pet and there may now be a bit of competition around as to who can treat me the best….
The upside of all this was that whilst having the “procedure” (I am still rather true to my roots, if it is not too un-PC to say, of wondering why we can’t call a spade a bloomin’ spade!) Anyway….whilst having a piece of my leper colony flesh cut from my arm, the Portuguese nurse who was assisting, told us all about the difference in wines from northern and southern Portugal. She spoke of the delicious easy drinking wines (white and red) from Alentejo and the stronger more robust wines (for drinking with red meat) from the Douro. I am sure I would have got far more detail and specific recommendations had the “procedure” not finished and it was time for the next patient!
I love learning something new every day!
For decades when I have shopped for clothes I transmogrify (hope this is the right word!) into Audrey Hepburn. I know that even in my better days this was so far from the truth as the statement tends to cause loud cackles from all I share this with…and it could also be the reason I have so many of the wrong clothes (and shoes) for every occasion, but a girl can dream….I do remember wearing a black polo neck sweater and slim fit black trousers (back in the day) when I actually spent whole days thinking that I was Audrey Hepburn…
If she was still alive today, at 85, I imagine she would still be glamour personified…like me, of course…One boob, grey haired Wendy with the permanent skin rash…Hey ho…Will have to magic my own glamour!
Back to hospital this week to see the wonderfully named Dr Champagne (in Dermatology) again. Maybe she will have results of the further investigations on my ever spreading leprosy-like skin rash and maybe – just maybe…a solution…Next week my back procedure. What would Audrey have done?
Just heard this morning that one of “my people” i.e. with exactly the same diagnosis as me (inflammatory breast cancer) diagnosed in the same month last year in Oxford, died before Christmas. Only apparent difference was that she left it a year before going to GP to obtain a diagnosis…Oh..how fragile life is…
The very clear lesson from this is to consult your GP at the earliest opportunity if you think something is wrong. Your GP surgery is one of the many amazing services that we have available to us in the NHS. Use them wisely! Let me praise in particular, the whole team at my own GP surgery, St Clements in Oxford and my GP – Dr Bratby who referred me so, so speedily…