I now have less than a week before I return to work….I feel nervous and vulnerable BUT that’s still the plan. Only one brush with anything medical this week and that’s not until Friday…So I started this week well, up early (after 4-5 hours of broken sleep) – did my “time” in the gym, had a shower, put the washing on….and then stopped…which is where I have been since.
I feel in a no-mans land, scared of my own shadow yet knowing at some point I need to make a move – whilst being alert to the fact that nowhere is safe from the shellfire anymore.
After my last treatment of pertuzumab on August 12th, I move over to a different team who will administer Herceptin at home. It has been an “interesting” handover. I had a very friendly phone call from someone who couldn’t seem to tell me where she was calling from “You’ve been referred to us” seemed to be the introduction. I have been referred to more places than I would like to think of in the past months…weeks…so her opener fell flat on me. I finally asked enough times to be told “Healthcare at Home” which immediately conjured up an idea that someone had dobbed me in for dementia, incontinence, mobility issues (or all of them!) before I remembered. Healthcare at Home are the organisation who will infuse the Herceptin. We had a very jolly chat about my prognosis (which somehow seemed better than thinking about the other services Healthcare at Home might dispense) and sorted out the date for my first treatment. I received my “Welcome Pack” today – so far…so good.
I’m not a great one for looking back, especially at the moment, I need to keep my eyes firmly fixed on a future (of some sort or another). However, this weekend seems to be a good moment to pause and look back. It is a year since my first cancer treatment..my first blog was written on 26 July 2013 and my first chemo was infused on 27 July 2013. This will be my 143rd blog.
So over the past year I have lost
- my hair
- my right breast and half of my left one
- the contents of my stomach many times over
- my sense of taste
- my eyesight (on and off)
- my husband
- trust in others
- two female friends (yes..two..)
- my life as it was
…and what have I gained
- better and stronger relationships with friends/family and cats
- an ability to discuss and pronounce complicated drug names
- a familiarity with both the procedures of CT and MRI scanning and with all the staff in that department
- a wig and a prosthesis
- the stamina to last in the gym for more than half an hour
- the support of people I both know and don’t know on this journey I am taking, which has been incredible – I owe both my sanity and life to so many in this eclectic group.
- an unexpectedly different life…which I didn’t/don’t want but will grab and run with (well..OK maybe not run….”scamper” perhaps?)
- a psychologist
- the desire for the type of peace where I may grow to forgive
- and of course…. not forgetting, the ubiquitous “leprosy”
Whilst pondering (again) the question of what I call the area previously known as right breast…it has been suggested (by the Greek part of my family) that I am in fact an Amazon.
“Among Classical Greeks, amazon was given a popular etymology as from a-mazos “without breast”, connected with a tradition that Amazons had their right breast cut off or burnt out.” (Wikipedia)
The Amazon qualities of strength, resourcefulness and bravery doesn’t quite match where I am at the moment but maybe head will follow body….? Quite like the idea of being defined as an Amazon rather than a one breasted ululating cancer patient…
“Can anyone build his happiness on the unhappiness of another? Happiness is not in the delights of love, but in the spirit’s highest harmony. How could the spirit be appeased, if behind it stood a dishonourable, merciless, inhuman action? What kind of happiness would that be, based on the unhappiness of another?”
A very dear friend sent me this (small part of a speech Dostoevsky made about Pushkin), which seems very relevant for me at the moment. How can there be such surprise at my despair? I can neither believe the situation I find myself in nor understand why even now I cannot be faced and told the truth..all of it…
I faced cancer by starting this blog in an attempt to be honest and open about my prognosis – that is how I got by…assuming the clinicians along the route would be similarly forthright and honest (which they have been). Having run with that I now find myself foundering as I unravel the spectre of dishonesty staining both my marriage and a friendship.
Meantime I have been taken on a diversionary weekend involving lots of bookshops, great company and no mobile signal – the only 3 essential elements for a good time I reckon. Unfortunately I seemed to carry all my sadness with me but it was, nonetheless, lovely to be taken away and enjoy the company of very generous old school friends who I have not caught up with for close to 30 years. We also made a discovery – that the name for a Bloody Mary without vodka is not called a Virgin Mary but….a Bloody Shame (or at least it was called that where we were staying!)
Back in the hospital environment again this week as it is yet more treatment with the leprosy drug tomorrow…my penultimate poison/mythical potion (whichever way I feel about it on the day as it drips through). I am looking forward to discarding all three lots of antihistamine and the interminable antibiotics after the last treatment on August 12th, which is now, finally, in sight.
So..back to the area previously known as right breast? The place from which I exuded a vast amount of blood on Tuesday? I realise that my heart isn’t on the right but in my head it seems to be anywhere and everywhere at present…right…left…on my sleeve…in the gutter…take your pick and call it poetic licence.
I waited all day yesterday for my test results from the blood and heard nothing. Today, however I have just heard that the tests indicate that there is no new cancer . This means that my treatment plans remain as previously. Thank goodness I can, for the moment, avoid the brain scans…I suppose I have just had a glimpse of what the future holds but, thankfully, not just yet.
So…I have been quiet for the past few days because aside from things being about as bad as they could get on the personal front, my health was again giving me cause for concern. My mastectomy flat-breasted side (is there a name for this, I wonder?) had swollen up and hardened – which is the symptom I had last year when the inflammatory breast cancer was diagnosed. At first I mistook it for muscles I had gained doing all this rigmarole in the gym but then realised the left hand side was nothing like the right hand side. Each day it hardened further which added additional anxiety to the already sleepless, tearful nights. I made an urgent appointment with my oncology consultant and the appointment was today.
She examined me and told me that she thought it did indeed look like a recurrence of the cancer on the same site…however to make sure she needed me to have a FNA (fine needle aspiration) and get me scanned. I went along to the breast imaging clinic who very kindly agreed to fit me in immediately. The doctor used an ultrasound and in a bemused tone said that she thought it might be an unusual presentation of fluid and might not be a cancer. She and a nurse then aspirated 450ml of blood from my inflated breast area. She seemed fairly confident that this may be the end of any panic but has sent samples off for testing just in case. I was then padded up with endless dressings as blood had seeped just everywhere, on all 3 of us and over the couch as well as filling three kidney dishes and bottles for the lab.
I then returned to the oncologist. Apparently this is most unusual (what do you know? unusual seems to be my theme tune) but as she said “you can’t aspirate a cancer” so it’s looking like good news. I do however have to wait until tomorrow afternoon for the blood results to come back to be sure that nothing nasty is lurking and there were of course, the nodes the doctor felt under my arm when she examined me.
So tomorrow is another day – I will either carry on with treatment as is….or go for scans in next few days and change treatment (to another new drug that I have yet to research)…will have to go back to “the waiting room” of previous months…
Although many people generously offered to go with me today, I went alone…This is how it is now and the sooner I face it the better…but I was unable to stop crying throughout, wishing my husband could have been at my side…
Today, ably assisted by a friend (not the one who has gone off to play with my husband without giving me a backward glance – no, thankfully I have others), we found a new game to play…Who was I in a past life? (on the basis of being dolloped out such a slurry of mixed horridness). We instantly came up with the obvious – Hitler, Pol Pot, and Genghis Khan – This way I can understand that maybe I am being served my just desserts…Well! it’s another perspective to put in the mix.
More hospital next week – one oncology, one psychology…The “ology” week…Bring it on. expecting the worst..hoping for the best…
I did actually make it into the office today (for 15 minutes) but am not now starting back work until the beginning of August. I like to believe that I will be OK enough by then…or that I will, at least, be experiencing a period of respite.
Decided that I will travel without medical insurance – maybe will try and get some regular baggage/cancellation insurance. I checked my E111 which was out of date so have sent off for a new one. I also changed “distinguishing features” in my passport and added…broken heart. Suppose I should also add – one breast only…What do people normally use this section for?
Meantime days are getting filled with GP appointments and occupational health as well as the regular range of medical intervention. The new antihistamine is like a cosh – I guess its method is that you don’t have enough brain power to notice the itchiness…?
Glorious day at Wimbledon..fabulous seats…bright sunshine and, although I’m sure you all thought that the spectator who had to be taken out because she collapsed, was me actually IT WASN’T me!
So while the rain clouds now stagnate above me doing their worst, with an occasional day of only light drizzle….I put out the laundry to dry on the line and come back to find it covered in a selection of bird droppings. When I returned from re-loading the machine, found similar bird defecation on kitchen wall by the French doors (is it a sign? a sign of what?) – I suspect it is “the sh** will keep coming” … and so it does…daily. I am haunted by the fact that the first I knew my marriage was over was when I was told a few weeks ago. Who is married to someone for 23 years and doesn’t say anything until he has reached the decision that it is over and the time for talking is over without me ever having joined the conversation? I hurt everywhere and at the moment just can’t believe that I can ever get past all this deceit. Thankfully I was given a sleeping pill last night and had my first full night’s sleep for a week.
I am supposed to go back to work this week, which I guess is a good thing but at the moment I am not sure I will be able to stop crying for long enough.
Then I try to find some travel insurance in the hope of having a week away…..Huh! Insurance there certainly is – worst quote £1912 – best (?) quote £989…This is for a one week trip only. Oncologists may well encourage you to get away and “carry on as normal” but think this is only going to happen if I go uninsured. How do people manage this? Wonder if maybe I can exclude the cancer? Trouble is that still leaves the spondylolisthesis and the diabetes..Hey ho…will keep on trying.
Holing up with Yorkshire’s ” ‘ow ‘do” to the Tour de France, then the womens tennis all accompanied by my itchy leprosy and so will get through another day…
So..the jury is out on the leprosy. Whilst it is now assumed to be a drug reaction to pertuzumab by the oncologists who have seen other cases, the dermatologists have, to date, only seen me. They are assuming this is the case but want to see me 6 weeks after pertuzumab has finished and examine/photograph (again!) my arms…Meantime they say I should stay on antibiotics (double the dose) and add more (and different) anti-histamine into the mix.
The next day I went back to the hospital to have another dose of the drug causing the problem…But now only 2 doses to go…22 July & 12 August…Bring it on…
I have all but stopped sleeping…I go to sleep but dream of being on the floor, bruised and battered…every time I try and get up I am kicked in the face until finally left for dead…I hear whispering, giggling and kissing as I lie there…Is it better awake or asleep? Both seem equally unbearable at the moment.
A chink of light though. Those of you who know me will be aware that I am the only person anybody knows who applies annually in the Wimbledon ballot and never gets tickets. It has started to become a joke yet somehow, I apply, with the same excitement and sense of anticipation each year…for the past 16 years! Well…to my astonishment – my cousin Joanne has managed to get me 2 tickets to Centre Court tomorrow…the forecast is for a fine, sunny day and I hope to get there in one piece and enjoy the day. What could possibly go wrong? Thank you Joanne.