..and so I face a week of stacked up appointments…back in the scanners again tomorrow then blood tests then GP then dental work then echo then oncology. Wish it wasn’t all so routine and “normal” for me yet hang on to the feeling that maybe “routine” is better than “urgent”.
It does bring home how I have normalised living with cancer, type 1 diabetes and a limited life…I am having to take it in my stride…along with selling the house, getting divorced and keeping close to my dying friend…Really no opportunities to sweat the small stuff…or the big stuff…or indeed any stuff!
Not sure why The Hellespont sprang to mind, but it did…On reflection, I think The Hellespont is called The Dardanelles now …but either way seems to represent where I am. In a narrow passage of water between two continents is the perfect facade for how (and where) I am with managing (or not) to string things together at the moment. I have been forced into this unknown, cold, foreign place and am still struggling against the waves, tides and strong undercurrents but now, at least, I am going forward rather than backwards, hoping for calmer waters ahead and…who knows, maybe some dry land.
This may all sound very cryptic but there is so much going on in my head (and my life) that it feels the right place to settle today, escaping into a little imagery…or perhaps magical realism.
Big week of huge changes ahead of me and then I am launched straight back onto the oncology stage again…blood tests, scans, appointments galore…Here’s hoping I am still fit for purpose…any purpose!
Today I have been examined, checked up on and booked in for more scans, several more…and more appointments but it appears that physically (at least) I am on an even keel. Bloods being “unremarkable” is a good thing, however I seem not to have had all the required tests so back for some more despite black, grey, blue and yellow arm. Whilst the nursing team think I may be starting to experience clotting problems…the doctors just raise eyebrows when I mention this! Phew…that’s another test I can duck out of….Mentally, I remain scrambled but that can’t be dealt with in anything evidence-based.
The good news is that I am moving from Herceptin infusions to Herceptin being delivered subcutaneously ie injected (in my thigh I believe). I had heard of this but understood that I still needed to be “observed” for 2 hours post-injection (so, no great advantage) by the visiting nurse BUT it appears not…evidence (gawd love it!) has shown this to be unnecessary. So…next treatment may not (perhaps) involve worrying about my conversational appeal to the nurse who visits, it may (or may not) be a quicker in and out…Of course nursing protocols often vary from doctors protocols so I have to wait and see…Roll on 2 March.
I was lucky enough to have the “perfect” nurse this week…who was more than happy for me to read my book and duck out. We passed the time of day along with the requisite medical information, but no more and she got on with her paperwork (which isn’t “paper” of course but admin on her i-pad..which is always entertaining to sign-off at the end of the treatment!) and drank her licorice and cinnamon tea whilst I did my own thing – so far as I could whilst being hooked up to a drip with a needle in my arm – “my own thing” is just so far from what it used to be that this is somehow my new normal.
I understand (from those who know how this works) that the NHS pays less for her to travel all the way from Somerset to treat me (for 2 and a half hours) than it would cost for me to go to the hospital a mile away for half an hour. I worked within the NHS long enough to know that I should not find this extraordinary but my instinct was to question this modus operandi, but not for long…I now just go with the flow. There is a “training day” for all the Healthcare at Home nurses next week in Burton-on-Trent (where HQ is to be found) so guess I will find out what has been taught on my next visit. I suspect that it won’t be as streamlined as I am led to believe but am prepared to be open-minded and, dare I say, optimistic? (What choice do I have?)
My beloved friend still hangs on – alternately crying and laughing down the phone but we keep talking. She likes me to be disrespectful of her “condition”. It remains an impossible situation every day but “we” keep going. She is determined I don’t go to pieces on her and so I don’t…yet. She has always been stubborn and I guess she will go when she is ready. I will never be ready, never.
Try to imagine housework being done in the style of – a mix of Cher in Mermaids and Mickey Mouse in The Sorcerer’s Apprentice – and you have me this morning…mopping the floors to Tell Him….
Whilst I really don’t want to be thinking about HIS kiss…and where he was/is planting it – just too sordid, it was an hour or so’s light relief. It gave the cats (and me) an excuse for some exercise – theirs (suffice it to say) involved tearing out of the house at top whack. And the bonus is..I now have very well polished wooden floors and a sparkly house.
So, I am “ready” for next stage of medical intervention. Monday kicks off with a “new” nurse visiting to treat me. Will she be chatty? Will I want to chat? What will be her particular “observation” style? Will I be able to read my book? Will I be here? (I do often ponder going AWOL). And in my current mindset, I feel I should probably launch into a rendition of Que Sera Sera.!
My inner arm is already extensively bruised (from elbow to wrist) in charming shades of purple and yellow (not quite the 50 shades of grey!) resulting from 6 vials of blood tests the other day (6? I know…seems excessive and I have no idea why so many and have got past bothering to ask!). Then Tuesday is back to see oncology consultant…I have not had scans recently so I don’t expect there will be anything to report other than booking my next gamut of tests, so I don’t go with too heavy a heart this time. I suspect that I may be rather tempting fate but surely (surely…) it must be someone else’s turn for the wicked fairy.
As I discharged myself from A&E on Sunday morning, there was no follow-up arranged so have had to piece things together myself…
Yesterday I had a full-on day with Oncology consultant, GP and MRI scanner. There was a suspicion that my loss of consciousness on Saturday night might have been caused by the cancer having spread to my brain. If this was the case it was seriously bad news so we had to “investigate” which meant an urgent brain scan. My very caring and concerned consultant managed to get me an appointment for later in the day and she said she would come and give me the results straight afterwards. Meantime my CT scans – done a week or so ago, were good. Herceptin is doing its stuff and keeping the cancer at bay (at least below my neck!)
Whilst feeling fairly confident that my cancer hadn’t spread – it was an odd day wondering if I was “OK” (it’s all relative) or whether I was going to receive a 6 months or less prognosis before bedtime….Bizarrely the friend who accompanied me all day and ferried me about (back and forth to the various appointments) was far more concerned and edgy than I was. Instead, I was worrying about the contradictory messages I was getting on my phone about today’s Herceptin treatment (delayed from Monday).
Late afternoon I was back at the hospital again, another cannula in and into the “head restraint” for my brain scan. Why is it that they give you earplugs to put in and only then tell you stuff about the procedure? I just zoned out as the loud noises rang out around me, beeps, mini-explosions, drilling, foghorns…I heard it all! Then sat and waited…
Bottom line is that my brain is “normal” – who knew? Although I was reminded that the brain scan only measures the anatomy – not brain function!
So..my arm is black and blue from all the cannula activity and blood tests of recent days/weeks…and I have discovered whole new areas of bruising this morning covering half my arm which adds to the rainbow around my back and coccyx. I am dressing in black and blue to match!
Jeez…another cannula this afternoon…can hardly wait….
“Nothing to worry about” is beginning to sound less convincing and is wearing a bit thin now…The area that was my right breast has re-inflated over the weekend. After an early morning phone call from Breast Nurse to enquire about “developments”, my plans have changed again. As the draining seems not to be working, they have held off another round of this activity. Instead of pitching up at the hospital today for a selection of opinions, I have seen phlebotomy instead and filled, what must be enough blood bottles, to fill a blood bottle recycling bin! Now am booked into the multi-disciplinary Breast Clinic tomorrow morning.
Looks like I will definitely be scanned and seen by the elusive surgeon and it remains to be seen what other procedures/indignities will be laid on as part of the outing. I have been warned that the appointment may take some time…There seems now to be an added issue of having lost over 10 kg in weight in less than 2 weeks. Worry, anxiety and emotional turmoil seem the obvious cause to me which I am unsure will be picked up on any scan but hey…let’s see. I had seen the weight loss as the silver lining to the cloud and now even that is being turned into a possible problem.
My working week has been somewhat sidelined by this hospital and GP circuit, so I am attempting to do what I can from home between the array of medical fixtures…
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”
My 100th blog…never thought I would be able to rant on to this extent!
As my right boob tried to kill me I am not giving it a second chance. Two hospital appointments down this week and progress is being made. It was relief to hear that my recent scans were “really good” showing virtual elimination of disease in my lymph nodes and no signs of any change anywhere else which means that the treatment I am on (herceptin and pertuzumab) is doing its stuff with gay abandon!
With this in mind we move on to mastectomy (because the diseased breast still shows residual signs of the cancer both in the breast and in the skin). I will have 2 breast reduction options for the non-diseased side. I need to discuss this with breast nurse who will show me photographs to help me decide, one option with nipple, one without. Can’t help thinking of eye tests when they ask you can see any difference with or without the lens and I rarely can – “Is it better with..or without?”…Rather feel I am going to look distinctly odd any which way!
Because of my type 1 diabetes it is important that I have as short an operation as possible, so options of both reconstruction and implants are taken away, especially as I will have as much skin removed, from the offending breast, as possible. And so…I enter prosthesis world.
It is good news indeed that they are no longer considering a lymphadenectomy (taking out all the previously diseased lymph nodes) which would make me high risk for lymphoedema…or a big swollen arm in layman’s terms! So whilst I may not be going topless – I will at least be able to T-shirt happily! Stuart asked (as a joking aside) the surgeon about NHS resources available for buying a new wardrobe after the op and guess what…it turns out that Macmillan do have grants available for this very purpose.
I can also have my own swimming costume “adapted” if I want – think I am getting into realms of information that are decidedly odd…next one is about bras…and beyond! I can hardly wait! There will also be radiotherapy after all this to make sure lymph area is well and truly zapped to as far away as it can be dispatched.
I still have to go to the orthopaedic appointment on Friday about my back surgery but the breast surgery has now been pencilled in for 31 March which seems alarmingly close.
I was back at the hospital yesterday to be told that my scan results are “excellent”….not a complete elimination of every trace of the cancer (as I knew) but the best results possible. I was told that “excellent” is a standard rarely used for these scan results…so it’s very good news.
I now have to continue with the long-term treatment and hope that it sustains the position…then surgery. The doctor I saw yesterday worked on the Cleopatra clinical trial for pertuzumab (the pricey…very pricey new drug I have been and will continue to be given) and he was extremely positive about it – I have been very lucky to have been prescribed this very new treatment and if I had been diagnosed even a month or so earlier than I was, the drug would not have been available for me to use. I do take on board that the staff of the oncology department are an unusually positive lot given the speciality and whatever the news but this has to be a golden nugget moment! So..hang the “incurable” diagnosis for the moment. For once I am in the right place at the right time with the right doctors.