It is now almost 4 years since I thought I had only those 4 years and so I have been celebrating a birthday. I don’t care what age I am, whatever the age, it is truly something to enjoy. Every year feels like a bonus and I am happy that I am actually here to get older.
- Dealing with each day as if it is my last has engendered an attitude of awareness of what makes me tick, big or small.
- I am thinking myself “well”
- Physical travelling has been indulged – in the past 4 years I have been on so many adventures and am loving it…Crete, Israel, Jordan, Deep South US, Salzburg, Romania, Bulgaria, Croatia, Serbia, Hungary, St Petersburg, Dublin, Saint Lucia as well as Hay-on-Wye, Brighton, Bath, Manchester, Harrogate, Liverpool.
- Not sweating the trips or outings I have had to cancel
- Perhaps more importantly I have also travelled from utter despair to contentment, albeit taking a rather kinked? kinky? tangential? route
- Living life vicariously is not living at all
- Family and friends (ancient & modern) have made the world a better place for me
- I have reframed the challenges I want to undertake and have, finally, accepted that some you win, some you lose!
- I also know how easily tired I get and am learning (or, more truthfully, am on the learning curve for) how to stop/opt out/cancel/take time out when head says yes and body says no.
- Indulging my creative and academic sides through writing, art, silversmithing, photography, studying again….and on a different level altogether – nail art, taxidermy…the list keeps on growing
- My new benchmarks for living – serendipity, psychotherapy, reading and laughing whilst climbing every mountain (as it were!)
- I am not planning on dying with any regrets of things not done/achieved
I had the treatment of group B of these women. Looks like I might be lucky….That said, trial was for regular breast cancer, early diagnosis and I was late and this was not trialled for my rarer form of inflammatory breast cancer
However….The Texas Programme for Inflammatory Breast Cancer issued this (rather lengthy) statement, which I have shortened.
Those of you who are active on social media may have noticed that this week, Genentech announced that their ongoing phase 3 trial of Pertuzumab (Perjeta) along with Trastuzumab (Herceptin) and chemotherapy has reached its primary endpoint (https://www.gene.com/…/phase-iii-aphinity-study-shows-genen…). The press release notes that the results would be shared at a major medical conference this year. We’d like to proactively answer some questions about the impact of these results on IBC care with this post.
Patient population: Early breast cancer patients (IBC excluded) with HER2+ tumors, removed by surgery and who are candidates for adjuvant chemotherapy with a Trastuzumab-containing regimen.
Study arms: Physicians choice of 3 acceptable standard types of chemotherapy along with Trastuzumab for everyone for 6-8 cycles, followed by Trastuzumab to complete 1 year. 50% of patients received Pertuzumab in addition to this for the whole year and the rest received a placebo.
Take-home for IBC patients: All we know from the press-release so far is that the result is positive, but we don’t know the details. These data have only a limited impact on how we approach IBC care due to the fact that the current standard of care for IBC is neoadjuvant (pre-surgical) chemotherapy. The FDA approval label for Pertuzumab specifically includes IBC and we routinely use Pertuzumab for our HER2+ IBC patients.
Inflammatory breast cancer is treated with neoadjuvant chemotherapy – chemo first, surgery/radiotherapy afterwards….
So…perhaps, perhaps, perhaps (do click to hear Doris!)
Who knew what a minefield I was walking into and the reactions I have had since my first mention of dirndl-wearing ? Anyway to set all anxieties to rest, a friend has sent me this article click here…finding Jewish meaning in unexpected places…is it kitsch? is it political?…or as originally planned, is it just about being daft?
Being daft surely has to be top of the agenda when cancer keeps trying to nudge it off the top-spot. But I keep sweeping it away and indulging the silliness…and this time (with a vengeance) in a dirndl!
Just over 5 days without an internet connection has proved challenging, irritating, expensive and a reminder of how life was, not that long ago. But, as my invidious disease, former “friends” and ex-husband have taught me…there is no looking back. Eyes forward and get on with it (at least I knew this communication issue was finite and I could always find a wi-fi or 4G spot if needed!)
In the meantime the hospital letters have been pouring in after a brief hiatus. Herceptin is continuing after an obstacle race with my echo results. Next week I embark on my 5 day ECG. I am still unclear how this works. I understand that a mechanism the size of a mobile phone will be fitted and can be attached to my belt or go in my pocket I have neither but am ignoring that for the time being. Just imagining that I might be offered a Guantanamo one size jumpsuit with pockets and belt for the experience but expect I will have to work it out for myself (gym will be interesting!). On day 5 of this, I have been called for a mega-set of CT scans. I imagine I can’t do this with the ECG stuff in place. (It says 5 day ECG but clinic is every Tuesday so either it is a 7 day ECG or it will stop working on day 5 in which case, problem solved). Suspect (given the weight of experience) that problem is not solved, and, after waiting a month for these “urgent” tests one of them needs changing…but which one?
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…
Whilst I plough on with packing up the house, one of my cats seems to have come up with the plan of dispatching every form of wildlife on her patch before she relocates. There are now all too regular “gifts” of mouse heads at the bottom of my bed in the morning – 8 to date…as well as assorted body parts in various locations. The garden has been scattered with a range of corpses of un-identifiable small furry creatures and now….she has moved on to birds. Huge dead pigeon in garden this week…and another today…and overnight the kitchen has become a scene of feathers, wings and …..eeeew!…beaks!
I wonder if this is my fault and it is a reaction to the mouse I taxidermied (if that’s not a word, it should be) a few weeks ago, something I never believed I would do..but it was a fascinating insight into the Victorian world of diorama and stuffed seagulls. I think that the cat must have taken offence at the anthropomorphic accessories and is, perhaps demonstrating her distaste..?
No corpses..or none visible at hospital today…I am such a regular for the CT scanner that they no longer ask if I need to change into a gown as they know me and that I come “CT ready” with no metal about my person. As I slide in and out of the machine following the disconnected mechanical voice instructing my breathing, I try and think of a time when this was an unusual pastime. Then the cannula goes in…then the contrast dye…then the feeling of inner warmth quickly followed by the sensation of urinary incontinence…How many times now? I can’t even remember…there was a time when I could count on the fingers of one hand..but hey…once more, with feeling! Results in 10 days
“You have really great veins” enthused Jeremy, the chirpy radiologist as he inserted (“sharp scratch”) the cannula and injected a cold blast of contrast dye into my arm. This is the stuff that makes you feel like you are chewing metal and have wet yourself…but flattery, hey…I can take it, whatever the circumstances or whatever is being flattered and so the scan was not “routine” at all…
A year and a day of only one breast…and I haven’t missed it at all…in fact it is much easier without it…but I do sometimes wonder where it is
I have now had my 2nd herceptin injection, or treatment 11 or cycle 25 depending on who is counting what. Each time I am asked if that number is correct…but I am well past the counting stage and am “happy” to trust the record books (which, I assume is what they are for…). Then we had the “echo” conversation (heart function). Apparently alarm bells ring when there is a 10% drop or more from one result to the next, but mine was 9.5% – so that’s all right then…apparently!
The injection itself…a mighty (the only appropriate word I can conjure up!) needle is prepared (but…a needle holds no fear for a type 1 diabetic…so that’s all right as well). Then the injection is given slowly (over 5+ minutes). This week a lump formed (a very large lump) at the injection site – a herceptin hillock, I suggested. However, during the time I was being observed, the good poison dispersed from its landing stage around my body. So…another 3 weeks until 3rd injection…treatment 12…cycle 26…
The nurses who visit are just great (now I have got used to these visits), they are so kind and really caring BUT there is still that layer of euphemistic language that I struggle with. I was asked if I was completing my treatment after number 14. Apparently that is the standard. Standard? me? – n’ah I know I am not standard so said that I was continuing the treatment – until it stopped working…The exchange of course then shifted up a gear and I seemed to morph into one of those “ladies with a poorer prognosis” – yep..that’s me…OK but maybe not a “lady”!
Three weeks have slipped by again and I await the call from “my” nurse about Monday’s herceptin dose…Hopefully it will be a short, sharp shock (aka injection) rather than being infused (which makes it sound rather more of an “active” pursuit than it is!). Will she (it has always been a “she”) ring today? tomorrow? Sunday? You would think I would now be used to this but I remain like a coiled spring throughout each round of arrangements and “delivery”. Treatment like this is a constant reminder that I have cancer…I HAVE CANCER – it yells and yells at me. Somehow several daily injections of insulin does not make me shouty in the same way that I HAVE DIABETES. Makes me wonder whether I am perpetuating my own cancer taboo. But…I don’t feel scared so much as afflicted. I think I have “parked” fear for now.
I have handed my collapsing symptoms to the GP and agreed that we will do nothing unless it happens again. I don’t want to spend any more time in hospital departments being investigated for unusual symptoms that undoubtedly will conjure up something like…I am a special case!
I have now been told twice since yesterday morning that I am “a special case” and I don’t think that either context was complimentary!
So…whilst I wait for the call, I fill my day…paying bills, going for a haircut (Yay…2nd one!), trying (again) to make sense of official correspondence that my brain can’t cope with and checking I have the wherewithal to create blood orange margaritas and “rim a cocktail glass” (?) later on…