It seems that I am about to sprint, like Hermes (the winged God not the home delivery service!) out of the waiting room and into the surgeons’ arms. Maybe the waiting room hasn’t been as bad as I have been making out! I now have the coming weeks mapped out with a variety of hospital appointments – scans next week to see if my drug treatment is working post-chemo, then dermatology to finally try and diagnose and treat the rash on my arm which has been there since last summer despite months of antibiotics and unguents. The following week I meet the breast surgeon who will lay out the options for me but mastectomy is the recommended route as, if the cancer returns, it will likely be to the same spot . The mastectomy however is no guarantee that it won’t return. The surgery will involve removing the lymph nodes under my arm as well as breast/s. When asking about this I discovered that I could develop lymphoedema in the arm, which is not medically worrying. It may not be medically worrying but jeepers – have a look at Google images – it doesn’t look very nice at all – almost as bad as the large swollen breast which was medically worrying….Hmmm…I am no longer differentiating the worrying – it is all just one big mountain of worry.
I could soon be the scarred flat chested woman with balloon arms covered in rash – how appealing! Can hardly wait for that swimsuit moment! But of course there is the reconstruction/ implant /prosthesis or prostheses conversation to have as well.
As well as this I am also attending a pre-op appointment in orthopaedics re my back. The plan being that if they can “slip” the breast surgery in quickly then I may be ready (really?) for the back surgery when the date comes up.
Fingers crossed that there will be no interventions the week of the Oxford Literary Festival at the end of the month as I really want to go to the events I have booked…
So..here I am back in the big waiting room. Tomorrow I have another round of treatment and see the oncologist with my list of questions…I suspect my top question may remain unanswered – will I be able to proceed with back surgery for which I now have a date, or will mastectomy have to come first? I know that I will need to have more scans before any breast surgery and maybe it is too soon to have those…and on we go…I’ll just have to wait.
Energy levels are very low – I reckon I could sleep round the full 24 hours and more if given the chance. I have re-started the painkillers for my back which are, I think, what is knocking me out. It reminds me of Valley of the Dolls whose constant backdrop was endless rounds of “uppers” and “downers” but, if I remember correctly both were also taken as diet pills so that you were hyper-active or did indeed just sleep days away and as a consequence did not eat. We are not in this territory! The fridge is full and I am still kept awake by its full/half full contents or the guilt of a lesser than half full fridge!
Better get down to the swimming pool and re-energise!
Just back from a brief de-tox and re-tox on a 24 hour spa deal, close to home. I enjoyed 2 swims and lots of steaming with a head and shoulder massage to boot, which I hope served to stimulate my hair follicles! Interesting spa – the first time I have had a “treatment” where no questions were asked about health and any medical conditions. Wonder if they just looked at me and knew that couldn’t possibly do anything that would worsen my health!
The remainder of the time was spent wining and dining – preceded by cocktails. We were treated to “Ruthie Specials” – gin, elderflower and prosecco which, rather like Pimms, slipped down very easily but packed a silent and knockout punch!
The hotel seemed very proud of its large comfy beds with soft sheets, plump pillows, body hugging duvets and “indulgent mattress toppers”. Doesn’t this cover most pillows, duvets and sheets? All rooms also offer the Crowne Plaza Sleep Advantage programme. This comprises a “relaxing aromatherapy kit to help aid a good night’s sleep”. Whether it was the Sleep Advantage programme, the cocktails or the massage – I was out like a light.
Now home and exhausted from all this relaxation.
The Middle- Eastern meal was a success – the kibbeh had bulghur wheat which seemed to flout the right level of “fine-ness”, the sumac added the required tang and the fattoush which featured “red meat water melon radishes” (which I am assured are vegetable) and included the buttermilk based dressing was divine. But no sooner have I come to grips with Ottolenghi’s larder essentials when I discover an exciting sounding ingredient that I have not heard of previously – “silan” – and who knows what that is?
Cooking aside I am beginning to panic about impending medical interventions. I must be feeling stronger now to be able to let these feelings impinge. Back surgery now looms if oncology allow me to proceed with this, if not it will be breast surgery first. One way or another it seems that the knives are out for me.
I go to see if my heart is functioning normally on Tuesday, which will be a regular 3 month engagement. Meantime I am still suffering from skin malfunction. My right arm has had an infected rash which has been dragging on since last autumn despite months of antibiotics and ointment from the dermatology clinic and, whilst it should be the least of my medical worries, it makes me feel constantly “itchy & scratchy”. Oh joy!
As if this wasn’t enough – I have also entered into a rather different dark recess as it is time (by necessity rather than choice) to change my mobile phone. I can hear many of you saying “what mobile phone?” as I haven’t exactly been keeping up with the technology. In fact when you look up my phone model on ebay it is classified as vintage! I know I wind everybody up by not even switching my phone on unless I need to use it (on some rare occasion) or am expecting a call…I know…I know… Whilst I feel fairly IT literate and confident, there is something about even mentioning phones that sends me into a spin. I don’t even understand the lingo – “sim card” is only on the outer edges of my consciousness so I am the true village idiot trying to select a phone when I don’t even understand the options. Watch out world I may soon be connected.
Just waiting for my latest Ocado delivery as the fridge is looking a little sparse AGAIN. I have been leafing through my Ottolenghi cookbook after a successful attempt at a dish with giant couscous last week. Who knew it came in so many sizes? I realise that I shouldn’t get too puffed up about succeeding on the starter slopes but I hope to go off piste with some more complicated recipes from “Jerusalem” when the missing components arrive in today’s groceries. Complicated in so far as there is a frightening list of ingredients. If buttermilk doesn’t arrive with the shopping I have to use yoghurt and milk instead and have to start up to a day ahead. A DAY AHEAD? What could possibly go wrong?
Meantime I seem to be in a hospital appointment jungle – 3 appointments in a row and none of them with oncology. First diabetic clinic, then eye hospital (for the mysterious saccadic eye movement disorder) then an echocardiogram – which is being done every couple of months because of possible heart side effects from my pertuzumab medication.
Whilst trying to focus on all this I have had a week of being bombarded every few hours on e-mail by “The Dog’s Doo-dahs” and “Funky Pigeon” because I have not ordered Valentine’s cards or presents from them. The Dog’s Doo-dah’s for goodness sake! Don’t they realise that I am doing a middle-eastern creation (or not) instead!
I haven’t mentioned April for a long time. April was supposed to be my chemo alter ego…my thick flowing locks…my full head of hair…my reminder of what I was…BUT once sick with chemo April was not the attractive prospect she had seemed pre-chemo. Today, however, 2 months on from the last chemo treatment, she came out to play. It was short lived – I put her on – looked in the mirror a lot, ran my fingers through the strands, flounced about the house for a while and put her back on her wig stand again. I need the real thing now so will just have to wait or wait for the first backcombing opportunity!
The truth is that I don’t think I will ever be what I was again. This cancer business changes you and, whilst I have had to think (and adjust my life) day to day because of (type 1) diabetes for over 27 years, cancer feels a whole other invasive deal. I don’t want to be a victim, I don’t want a “battle” I don’t even want to hear about how successful others have been at “beating” it – I would just like my old mindset back. Some days, many days in fact, are good and cancer barely flits about at the edge of my consciousness whilst I try to re-build, both physically and socially. Other days are foggy and treacherous – I sense the mendacious cancer lurking, seeping, alert to signs that I may be getting too positive.
So I try to hang my hat (or wig?) in the fug of the middle ground where my emotions are guarded and where my edge has gone. I want to wake up with energy, a spring in my step, clear skin, my old hair, more of my memory in situ and the cancer gone (tall and slim would be good too?!) … But you know what they say about “I want”? – never gets…Drat and double drat!
I am growing more and more healthy BUT the path to shaking off the ever extending (and overhanging) toxic claws of chemo remains an ongoing pursuit.
I am pushing myself on the swimming and am now up to 18 lengths which is a far better place to be than a few weeks ago, when I was sobbing in the pool because I could barely manage one length. The downside of the swimming is “jelly leg syndrome” for the rest of the day – but a very small price to pay for gaining strength. I am muddling through with this twice a week now. (For the purposes of the animal, vegetable or mineral heading – I am assuming this is vegetarian jelly and thus vegetable…please don’t correct me if I am wrong!)
I am succeeding in walking more and further. Being outside – despite the rain, wind and leaden skies, feels good although I am having to rediscover my outdoor togs having lived in lounge (?) wear since last summer. The main problem with the walking seems to be that I can breeze along quite happily but then come to a standing stop, mule like, without warning and can go no further.
…and the mineral….? Much though I would like it to be diamonds twinkling at some imaginary finish line (or ideally somewhere I could actually reach out and grab them), I think the more appropriate “mineral” is the blinding realisation that you need to be tough as nails to make any progress on this journey.
…and on I go…
However much friends and family say that my colourful headwear suits me – it remains my bugbear both for what it signifies and how it looks as well as the relatively regular reason that I have never been a “hat person” and you can’t be coerced into being one.
I return again and again to lusting after a full head of hair. Patience is not my middle name and yesterday I ditched my little hat and went out, for a walk (yes…really!) leaving it behind. What do you know people look at me the same way with or without it? – either way I guess I still look like a cancer victim patient, so may as well shout it!
The wind blew through my #1 hairstyle and I felt happy…maybe a more appropriate analogy than “going commando” would be a burning your bra moment. Maybe that moment is yet to come when I choose (?) new breasts.
Last night I had a prophetic dream – I was at my hairdresser’s having a regular haircut as if none of the past 7 or 8 months had happened…No wonder I sleep so much.
Treatment 3 looms on Tuesday…so..halfway towards second scans and meeting with the surgeons. “Meeting with the surgeons” conjurs up a world of questions and possibilities…What will be offered? Mastectomy of what sort? Will bilateral be offered? and what about lymph nodes, chest wall and collar bone? Breast reconstruction? What are the options? How do you know what is the right size? I am bubbling up with all sorts of queries..whether they are sensible or not who knows or cares…I should be putting them into some kind of list but with my brain remaining a rather loose cannon, any list I start soon becomes a shopping list. Maybe it is a type of shopping list but just won’t be Ocado home delivered by Scott in the cabbage van.
I am barely beyond the residue of the chemo melting pot but am moving along a rapid travelator (yes..this really is a word…who knew?) to a different world – living, artificial and reconstructed breasts. I am suspiciously approaching the learner slopes knowing that there is a whole new world and landscape awaiting. I am only weeks off full immersion into more than just the new language of this very specialist body sculpting.