Doesn’t get much better….
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!
Lurching through this week supported by gin (fortunately I won a case way back when) which is proving very helpful…
Personal stuff dominates my head, heart and tear ducts but continuing medical stuff continues to bubble up and erupt through the surface. I will see Occupational Health on Friday but meantime have been dealing with poor vision, poor liver function tests, and more dental work whilst I have sidelined the bowel issue which also needs me to do something…How to fit it all in?
It seems bizarre that I am looking at “retiring”. Possibly very soon. So far as I was concerned I hadn’t yet reached the stage of deciding what I want to do when I grow up…and now I seem to have reached the end of the road (in one sense at least…). Guess that means I have to start out on yet another new road…Too many new roads at the moment, for my liking, all far too scary and with no reverse gear options. Struggling to find it “exciting” and struggling to stop yearning for my old life.
One of the techniques suggested to me was scheduling “worry time” into the day. A scheduled time where you focus all your worries. The idea being that you silently acknowledge worries the rest of the day but shelve it for your “worry time”. I somehow can’t believe that this has been a great success with Jewish women…. the day isn’t long enough! Jewish mothers worry. It’s a total cliche, but just how we are programmed.
If you were put on the spot and asked what you would like to do if you had the opportunity, what would you say?
Apart from spending many spare moments over the years pondering my Desert Island Discs, I have never been a great one for this type of on-the-spot, list-making thinking. Deciding which dinner guests from history you would love to sit round a table with, where in the world you would most like to be or what you would select for your last meal etc. Does this make me indecisive, lacking ambition or just the sort of person who takes what’s coming, rather than trying to influence it? I am certainly no stoic but have never really thought of myself as somebody unable to influence my own future.
But..here I am. My husband was the one who always made the impossible seem possible for me and I thought that made him the yin to my yang (or however yin and yang work!). Without yin where does my yang go?
I am generally made “happy” (it’s all relative!) by the small stuff of life – cats snuggling on lap, arms round my son, sharing “stuff” with friends, the smell and sound of the sea, the sun on my skin, a good book, the perfect tomato (strawberry…mango…nectarine…fig…), a full fridge, singing in the car etc. Somehow now I feel compelled to come up with something big…something I have always wanted to do…something that may open my mind to new ways of living (or indeed dying). I wonder if these thoughts are provoked by the hugely promoted bucket lists of others (who started these? WHY?) or whether it is the truly debilitating thought that maybe I am just small-minded or prefer to turn in on myself rather than take on the “adventures” that dangle out there.
Maybe all (!!) I need to do is to let myself veg out and/or invest in some personal growth. To feel at peace living with myself and by myself. Positively choosing to live day to day rather than torturing myself with realising dreams (yet to be dreamed) that I think I should make myself achieve. It’s a thought….
As if I wasn’t juggling enough appointments and hospital departments, I now have a new one for the list…if I can be “arsed” to follow it up….Oh yes…it’s the bowel “people” for me now – either in combination with orthopaedics or not…depending what they say. After presenting a pain free spine to the orthopaedic head honcho on Monday – filled with relief, after my months in the gym, I was then pulled back to earth as, on examination, he found “problems”. So it is back to the drawing board with a new specialty.
Off to my “usual” hospital tomorrow – I’m doing well this week – only 2 medical appointments..and the same next week too…then they start piling up again…There is also the re-grown right breast that continues to swell BUT I was told that I only need to deal with it if and when it bothers me. It’s not bothering me, so inaction seems good!
The “leprosy” is fading but not completely gone yet…hopefully it will have all disappeared when I return to the dermatologists at the start of next month and I can retire from the medical mystery shelf!
And the rest of life…well…it seems fairly stuck dealing with all the admin surrounding my medical “conditions”. Escaping the impending British winter, endless sleepless nights and the claws of my “old life” currently feels like pure fantasy.
I have known my prognosis from kick-off, so why does having it repeated back to me feel so different?
Well…for starters, it is making me more alert to the fact that it is time to do what I have always wanted to do…ideally as speedily as possible. But I can’t shrug off the constant ache for exactly what I can’t have – my old life, my band of gold intact, my husband at my side, my family and friend back again without the betrayals, deceit and lies…But just how does anyone just turn off 25 years of investment and what I had thought (so foolishly) was shared lives, love, hopes and dreams?
So…I have to shift to a downsized, second tier of wishes, which in my contracted world and view of life I am still struggling to identify. At my core I have had all meaningful ambition and stuffing knocked out of me by recent events and this is partnered with Sword of Damocles living…(I see I mentioned old Damocles in my blog on 26 October last year before I knew how much worse things were to become…)
I do want to:
- read endless books (especially now I need feel no guilt about trying to read books I feel I should have read, or should try to read.) Time is too short to read anything other than what I want to read – or, what book group stipulates, of course!
- be surrounded by honest, unafraid and supportive people…along with my cats.
- be a good friend to others
- bask in warm sunshine the whole time – and see no more British grey skies or winters.
- morph into a person that will actually get on with writing the novel I spend so long talking about.
- be able to sleep properly.
- be invited to part 2 of George Clooney’s wedding reception, which I believe is in Venice in a couple of weeks….or maybe Venice will be the actual wedding…Either way George Clooney and Venice sounds good…
- be able to smile and laugh again, be a good mum…and to forget…if only for a while
It was inevitable that taking a step out of the medical world for a week would result in a backlog, which is exactly how it’s been this week.
I am now 4+ weeks since my last pertuzumab dose and the “leprosy” is dwindling…I have, at last finished the endless months of antibiotics and am managing to finally cut back my antihistamine intake to roughly “normal” levels. (Bearing in mind, my “normal” is something very special!)
I had my first dose of Herceptin at home on Monday, and in fact, needn’t have worried about what to do with a nurse in the house for the two hours it took to administer. The nurse and I did paperwork, which took up most of the afternoon. There was some really interesting questions I had to answer whilst hooked up to the infusion. I ended up unsure whether the “questionnaire” was designed to provide light entertainment whilst you are treated or whether there was actually a medical purpose to this deep and bizarre probing (ranging from your toilet habits to your attitude to domestic pets). It was great to see community teams using i-pads where they have your clinical records, can access blood test results and the outer world as well as personally being able to sign off on what has been done, without having to store paper files in the house.
Then to oncology. The good news is that they are unworried about my re-sprouted right breast. It is apparently fine unless it bothers me and will (or was that “should”?) resolve in time. I quite like it, it is rather like a phantom breast that completely dispenses with the need for a prosthesis (if I hadn’t already ditched it, of course) and is rock hard and quite perky…One worry to cross off the list (temporarily at least).
The bad news is that I pushed for a prognosis. This came with endless conditions, ifs and buts and hopes of new treatments BUT was, in effect, exactly what I had thought from the outset. Ballpark looking like about 4 years. Next scans in October to keep a watch on internal organs and brain (and of course breast) which are the likeliest potential hot-spots.
GP and assorted therapists tomorrow…. and hey…I have even managed a few hours at work as well..and it’s only Wednesday.
I have been to Crete and back since I last blogged and in the process have discovered the possible cause of the Greek economic problems. Everybody (certainly in Crete) is so incredibly open, warm and generous! I have stayed with and met the most amazing people, dined on the most fabulous fresh food, drunk delicious Cretan wine (and raki) as well as soaking up the very hot sunshine and swimming in the Aegean. Yes…I swam in my bizarre and unnecessarily fluorescent mastectomy swimsuit…and survive to tell the tale.
Had a fascinating day in Spinalonga – the island where Greek lepers were sent 1903-1957. It felt somehow incumbent upon me to visit “my people”, even if they were in the cemetery. Since my foul skin rash and constant itchiness of the past year I have been conscious of a deep affinity to all lepers. Perhaps they have been conscious of me also as since the visit/pilgrimage the rash has lessened day by day. (Of course it could be that I am for the first time, more than 3 weeks from my pertuzumab treatment which is thought to be the cause of the “leprosy”)
But now I am back to face the music this week. It has been very liberating to have a week where I haven’t had to get undressed for doctors, have multiple blood tests or go in a machine of some sort. BUT….my on-going treatment starts at home on Monday. Apparently because the drug is being given in a community rather than hospital setting, it has to be infused over two hours rather than the usual half an hour. By the time the cannula is put in and the flush at either end of the treatment is given, this will mean a good half day. Wonder if I have to talk to the nurse all this time or whether she will have other business she can attend to…I had rather imagined lounging around in the sitting room with cat in lap whilst this all took place rather than making conversation…Hmmm…
Tuesday is my multiple hospital appointments. It looks like they have been re-arranged so that I can manage them all in the same day, I hope that is the case. There is a lot to discuss this time which always makes me nervous. Whether I go back to the surgeons again will also depend on this appointment. Then GP appointment later in the week.
So back on the hamster wheel and back to grey skies but if I close my eyes there is still Crete.