Echo results…blood tests…herceptin…eye problems…insurance negotiations…driving license re-application….oncology…
AND what do I do? Act my age? Be sensible? ….n’ah…what do I do? Without consulting/talking to anyone whose advice might be useful. I get my eyebrows (which vanished..never to return, from chemo) tattooed. Or, in more age-appropriate language. I have had microblading.
Whilst the shape is OK (or is it?)…they are very dark…I gather this will “soften” but I currently feel defined by my eyebrows. Unsure what to do, other than act surprised! Should I….
- Disregard aftercare advice and see what happens?
- Wait for 2nd appointment and get them broadened? add grey? re-shaped?
- Take to my bed/garden/the hermit-life?
- Grow my fringe?
- Buy better concealer?
- Stop being so vain?
- Botox my lips to shift the focus?
- Wonder about rain damage
- or blame my mother, she did tell me “that if the wind changed I would forever remain with THAT face” and it was BREXIT day after all…(so maybe Boris’ or Nigel’s fault)
…and wonder why someone of my age was so compliant when the “technician” was not the young beautifully browed beauty I had imagined (after my NARS experience). Instead someone with eyebrows I visibly balked at (so far as I was able, without my glasses on) and there’s the rub…
I seemed to be bearing my load reasonably well in recent weeks…but yesterday I came tumbling down..and down…
I spent the night fitfully, as I couldn’t seem to shift acute pain, which ebbed and flowed through the small hours with no painkiller killing the pain…and when I finally got up it was as if the physical pain had awoken a whole headspace of mental pain. How on earth had I been kidding myself for 18 months that my one breasted physique was Amazonian rather than “deformed”? In a split second I was hurling my rose tinted spectacles I had been clinging onto for dear life, across the room. I suddenly saw the make believe world I had constructed to protect myself, crumble. A world where all my clothes (and me) had looked great. Suddenly I was staring at myself in the mirror and seeing every item of clothing I put on as worse than the last, all emphasising loss of every possible kind. I stood there, for what seemed like forever, tearfully acknowledging that actually I feel half the woman I was as well as half-hearted…half-baked…and that maybe that I haven’t yet faced the half of it…
Suspect this is shake-down time…now I have been through chemo, hair loss, mastectomy, betrayal three times over, retirement, divorce as well as selling and buying property and setting up my new home..it is now the moment to face it all..and it’s not pretty…
…but today have been to the gym and there is the smell of roasting lamb and garlic through the house as I am cooking for friends…and I would certainly be feeling even less than half a being without them…
OMG where on earth did I put my hairbrush 2 years ago? My curls seem to be growing out…and I have been loving my curls…no hair brushing…no styling…no nothing…
I suppose this should feel like a good thing. After all, a lengthy dose of chemotherapy and losing all my locks in order to acquire the longed-for curls is quite an extreme way to go. However it did feel like a wonderful gift when my hair finally did come back and it was so different and quirky. I fancy neither more chemotherapy nor a perm…and I can’t think of any other options so maybe I should just be satisfied that I now have hair, it’s not grey and it is growing fast and furious. But where is that damned hairbrush?
After a rather protracted trough I think I am now being dosed with a large enough dose of anti-depressants to make me feel normal, or abnormal – depending on perspective!
I spent yesterday afternoon being dosed with Herceptin at home. It is a curious situation being treated at home. The nurse has to observe you, as the drug infuses over a couple of hours and, as we are both sitting on armchairs in the living room, it feels like the only option is to talk to each other. I think it would seem very rude to pull out my book to read. This enforced intimacy is rather bizarre and, I imagine, rather like the confessional…This was the second time this nurse had visited so I “know” her now!
I learned about the tomato varieties she grew this year, how the housework is shared in her house, the unpredictability of cancer…and more…She learned about the novel I talk a lot about writing and the emotional fallout of the divorce process. We had a long discussion on hair loss from chemo. She told me that I was in the majority (of “her” ladies) who suffered far more from loss of their hair than from the loss of a breast. How soon, I wonder until we look back on chemotherapy and wonder how patients possibly subjected themselves to its brutality? The two hours flew by! Next time we plan to discuss assisted dying/refusing treatment and Dignitas!
Scans and echocardiogram now loom…
It is ten months since my last chemo treatment and I, only now, have enough hair from which I can squeeze water out , after a shower (a very small amount of water squeezed from a very small amount of hair)…Not sure if people were being “encouraging” by saying it only took about four months for your hair to come back, or whether I misinterpreted “hair” as being hair you would recognise as being a part of me! Either way, it’s back – very different…but back! However….not enough to grow a fringe (of any sort) yet…
It is “ology” week again this week….
First – Dermatology consultants today and their array of both clinical and phone photos of my arms. I hope that I may be able to put “skin” to bed as my leprosy has continued to improve since the toxic “pertuzumab” was stopped. I am reluctant to say that the problem has gone as I seem to have a different skin condition developing – on my shoulders – but maybe I won’t mention that. The more I mention, the more hospital appointments I gather…Think I have now (finally!) got a handle on the things I really need to follow through and those that can fester on the sidelines.
Over the past week three people have not recognised me. They could of course have been blanking me, which I have found fairly common since I started sporting the twin taboos of both cancer and divorce but I don’t think so. They were people I have known independently and whom I have just not seen for ages. They didn’t actually know what had been happening to me (or that was the story, trust…as you can imagine is not my big thing at the moment)…
I hadn’t thought I had changed so significantly on the outside. The inside yes but outside….really? Of course that is discounting my hair….Does hair make that much difference?…aren’t people always being re-styled? Of course I have been re-styled by medicine rather than choice. The hair I lost, with chemo, last year has grown back differently but hey…Maybe the pain on the inside has seeped through and I present a whole new face to the world…Who knows? It is unnerving and unsettling and I am both feeling very prickly and finding it disturbing to handle.
If I really looked SO different, wouldn’t that be great? – my own cloak of invisibility. Then I would be free to scamper around where I pleased instead of constantly stressing about leaving the house and the possibility of bumping into the unfaithful husband and his scheming whore.
More “home” treatment today..another afternoon of being infused. This time the nurse is coming from Birmingham – seems that Healthcare at Home has a huge patch for the staff to cover. As much time must be spent driving as “nursing” but maybe this isn’t the time for me to go into medical manager mode!
More medical appointments loom – diabetes, dermatology and GP amongst others in the coming days. I am still trying to ignore the bowel issue!
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.
Now last week’s news has started to sink in I feel like I am setting off from my previous crossroads with more of a swing in my step. My regular 3 weekly treatment happens again on Tuesday but I sense that I may start facing this differently now I know this will be the only treatment. Hard to feel smug when sitting in a room of people (being pumped with drugs) at every stage of cancer, who I now feel more than ever, are my crowd! However I am sure that the experience will be far less stressful.
Meantime I am back to fretting the small stuff….When did a sorting office (for parcels) become a “sortation facility”? Why, when I try and take a “selfie” of the “new” me to put on the blog does none of the dozens of pictures I have (so far!) taken look anything like me? …and why..oh why does it take so little time to lose stamina and yet take so long to regain it? (same could apply to hair!)
Whilst I may be having my first bad hair day for some time…which, you understand is a good thing, as it means my hair is now sprouting enough to be unruly..nothing else is bad about today…Today is my red letter day!
Just back from the hospital and the verdict is no biopsy….no more surgery…and no radiotherapy…I’m “better” (albeit with provisos that this may not mean forever…but what does forever mean anyway?). Just the 3 weekly treatment which will continue and regular scans to see if anything pops up…otherwise I’m good to go!
I am “celebrating” with a gym session (which I arranged yesterday) so that a trainer can help me regain my stamina which seems a good start to getting back to the real world. I am sure I will find other ways to celebrate later on….
Yesterday brought forth 4 hospital appointment letters – oncology consultant, dermatology, orthopaedics and echocardiogram. As if this didn’t fill my diary enough I also had 4 new appointments for my 3 weekly regular treatment. Post-surgery it looks like it will be radiotherapy which I think means daily treatment for weeks – by then, I will be needing a diary manager! Am supposed to be exercising to re-build my stamina but I am struggling to find a “window” for this.
Good news is that at the moment I am still managing to fit some regular life in as well as being able to attend the Literary Festival next week. After that life may segue into a completely blurred world of hospitals.
Tomorrow is decision day re breast surgery. I have come up with a list of questions that I may have to try and prune today. Whilst obviously concerned about the procedures, pain relief and recovery I also have a myriad of other (more practical) things to ask. How many prostheses do you get/need? Do you wash them? by hand? washing machine? Do they need changing regularly? Are there different summer & winter varieties? (like duvets!). Also what size will reduced breast be? I had an accident in swimming pool (no…not that sort of accident..) but the bra cup in my cossie tore (leaving me exposed!), which means I need a new one…but what size? Can I risk getting one to fit now or not?
I also seem fairly fixated on the fact that if I want to have a double mastectomy I need to see a psychologist. Fair enough but wonder why this is clinically considered to be worse than having toxic chemicals pumped through you and losing your hair. I suspect because it is permanent. I still think that I will be forever haunted by the hair loss rather than the breast loss.
* Giant Brest is the name of a friend’s bike shop in Brest (France) – just thought it was funny! Humour seems to be the best way to deal will all the above….