The past week seems to have cast a lot of shadows, but not just for me. Feeling rather like the world has gone crazy (and indeed it has) but I am becoming more resigned to the fact that it is part of a cycle for which debate and engagement is the appropriate response. A friend, yesterday, suggested that spouting off in an echo chamber was useless and that we need to return to the days of talking with the very people whose views differ from our own. We need to learn/re-learn to debate our position rationally whilst also actively listening to other opinions.
Political blindsiding has not been all…I seem to have been dragged back (with some token kicking and screaming) into the world of being a “patient” again. Despite being what I think of as a hospital regular, stuff has changed in my absence. New scanner (with a different voice) plus the facility to watch movies, not that the staff have learned that part yet! Sadly still the same dye injected into veins that makes my mouth taste metallic with the added bonus of the “warm” (not fuzzy) feeling as if you have become incontinent.Cancer! – such a riot!
All this week’s medical appointments seem to have ended up focusing on my heart function. I am unsure why and asked if my blood tests had been worrying. They hadn’t. I asked if there were any other indicators that were awry. There weren’t. Nonetheless 3 doctors in 4 days does make you wonder. Maybe it is just something to add to my flailing round in the dark state. Still, more doctors, more tests, more clinics over next 2 weeks so maybe something (benign) will emerge.
…and just to throw something else into the mix of the darkness theme, our cat has gone blind.
But I have just discovered a bright side. Glitter grout. Who knew?
Reunited friends. What a lot to catch up on. 40 years of life’s diverse routes which brought 33 of us (our school year group) back to Harrogate, where it felt like it had all started. We have all had our share of successes, failures and tragedies. We had a Pandora’s Box of memories which when we started to put them together created a far better narrative of schooldays than I had been able to assemble for myself over the years. We also found a bounty of black holes and events I, for one, could not believe I possibly attended even with photographic evidence. And, who knew, that when we planned what we would do when we got into the real world, that we would be so adept at clocking up such an extraordinary number of ex-husbands?
So it has been back to normal life again this week, pickling cucumbers and preserving lemons, which is my sort of “normal”. My other “normal” is also about to kick in, with a bonanza batch of blood tests in the spirit of attempting to kill three birds with one stone. None of them quite at the right time for the different clinic appointments but experience of these endless check-ups tells me that it will be “fine” ( a pithy “fine perhaps…but that’s OK)…and I know I have to chase up scans that should have been done by now, but I haven’t.
…so…an “interesting” week….
- NOPI Feast (…and “feast” doesn’t even come close!) with Scully on Saturday
- Birthday lunch and a perfect storm on Sunday 🙂
- Afternoon tea with the Master at Brasenose on Monday
- Colin, prosecco and sparklers on Tuesday
- Fine Art combined with severe Swiss angst on Wednesday
- Womens suffrage on Thursday
- George Eliot on Friday…and…inquest “verdict”
The week is totally enveloped in the heart-wrenching inquest into the death (yes…death…of 18 year old) Connor Sparrowhawk, my friend, Sara Ryan’s son “Asked why she had not mentioned the need to observe Connor in the bath, Sara Ryan (click on Sara to link into twitter feed) said it had not occurred to her to raise it with expert staff. She said it would have been like asking a school teacher taking children on a school trip not to “let them loose on a motorway”
This post may make sense to nobody except me but a reflection of how bizarre and eclectic life can be…All the week has been accompanied by relentless oozing pus, 2 lost finger nails, 6 lost toe nails and foul tempered cats alongside solving my telephone intrusion issue…and all set against the background refrain in my head of just how far Dollywood is from either Nashville or Chatanooga…
..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!
Moved away from all things breast based today and moved to orthopaedic-land. There is a “system” for this pre-operative clinic that I attended which involves moving between 7 people/tests. You need to see all 7 before you can leave – except (naturally) I didn’t! I did wonder whether we were in the lobotomy clinic rather than orthopaedic clinic – as the “blue” form (with these 7 processes on) asks you to carry this form at all times whilst in the department and ask each person you see to tick the appropriate box, so that when and only when, you have 7 ticks you can go home….I didn’t tick any (nor did the clinicians) and yet can still remember which 3 of the 7 steps I completed! No memory clinic needed yet…that’s a bonus!
I met with a doctor who only seemed interested in listing my medications on another form of several pages in length (I had already filled in a similar one at home and another two when I arrived at clinic this morning) which, if I had seen nurse first – they would have done. I have answered questions this morning on everything from the height of my toilet, the style of my sofa legs to the level the pain was affecting me doing a variety of “tasks” from sex to housework!
I was asked for my insulin dosing range which is not the easiest question as my dosing depends on what I am about to eat and what my blood sugar is. I asked why this was needed as (aside from pre and during surgery) I would manage my diabetes myself, which seemed to be an issue…(furrowed brow and silence) I did try to explain that my 2 previous experiences of hospitals managing my insulin intake was disastrous and I wasn’t going there again (silence). The diabetic nurse team are happy to do a sliding scale for insulin for the surgery and I am happy to sign whatever waiver is necessary to be able to manage my own insulin whilst in hospital (silence) – but this obviously doesn’t fit the system….although interestingly it wasn’t an issue for the breast surgeon who positively encouraged this “help”. I really hate how “difficult” I am seen when I just want to manage my own diabetes care in a hospital setting.
I then moved to see the consultant who seemed far more at ease with this approach, phew! He was however quite concerned about the number of risks there were with this major back surgery. We discussed other ways of managing the problem and agreed that a nerve blocker injection in the spine might be a better starting point. Whilst it is neither a long-term solution nor long-acting, it could buy me some time whilst the breast surgery and recovery takes place. I will be sent an appointment for this with a follow-up a month or so later so that we can re-examine the options when I am done with the breast surgery.
The thought of not facing 2 lots of imminent surgery is a relief. So instead of multi-tasking my anatomy I can now focus on next week’s meeting with my breast nurse. This is a time to look at photographs of mastectomies, scars and more, as well as “touching up” prostheses, looking at suitable bras and making a decision! I know this will be done in the same professional and caring way as the rest of the breast cancer meetings – in a cheerful patient-friendly room – but I just can’t help summoning up the encounter in a seedy, sticky floored Soho location instead. My imagination is running riot at the breadth of possibilities…What’s the matter with me?
Thank you to the wonderful Dr Levett in the oncology department who not only discussed my on-going treatment with me yesterday but also contacted the Eye Hospital for me, so that an appointment appeared from the Kafkaesque maze, as if by magic!
Today I went for the eye appointment. Good news is that it is not a problem with my macula. Bad news is that my vision is reduced to top 2 lines of sight chart (both eyes) . I had eyelashes embedded in the white of my left eye which had to be removed by forceps…yes, really….(not baby delivery size I hasten to add) although I did manage to focus for long enough to see what sized instrument was being prepared! These “foreign bodies” were obviously not helping with my blurred vision and did explain the watery eye. BUT, this was not all that was discovered. On top of this it seems that I have developed (with some speed) cataracts in both eyes. I suspect that oncology will not entertain any notion of eye surgery whilst I am chemo-bound so this may be yet another problem I have to live and deal with.
I am feeling seriously grumpy! So much of my life seems to be disappearing…and if I can’t read I really just don’t want to know…
Isn’t cancer, type 1 diabetes and spondylolisthesis enough for anyone? For the first time in all this I am starting to think “Why me?” I have obviously seriously rattled someone’s cage…
Another joy of being a Type 1 diabetic is the related problems that crop up – however good your control. My left eye is my Achilles heel…in which I have diabetic maculopathy. This needs checking regularly but has been kept “well” over the past decade by managing my diabetes and blood pressure. However, (to continue with the classical imagery!) it has always felt like stumbling along with the Sword of Damocles hanging over me…..
The macula is (in layman’s terms) the centre of vision and the problem I have causes small exudates (micro-aneurysms, if I have my terminology correct) to form in this area, which to date, have not leaked. But they could at any time which then causes major problems and could lead me to lose my sight. Laser surgery is possible for this condition but (sod’s law – to continue yet again with the classical theme..!) the area I have the problem is very close to my centre of vision and it has been regularly deemed too risky to do surgery.
I am now having very noticeable trouble seeing out of this eye. What this is related to, who knows? I seem to be losing all the eyelashes from this eye which now weeps and causes blurred vision for the first few hours of each day…I hope this is the problem but meantime I continue to try and contact the Eye Hospital (the most difficult job known to man!) for a sooner appointment!
Oh! The joys of multi-illness-ing (I am sure that must be a regular medical term but if not it should be!)
I was foolishly so wrapped up in the cancer experience that I took my eye off the Type 1 diabetes for a moment which is always a disaster.
Having lived with Type 1 for 28 years I do know what I’m doing and have managed the difficulties of pregnancy, menopause, surgery and the steroid boosts from the chemo like an old hand. What I am forgetting is that I can’t eat as much as usual and when I went out for lunch yesterday, I took too much insulin for what I could manage to eat. My blood sugar dropped to the floor and took me and my friends by surprise…Sorry guys! I was driven home and apparently recognised that the problem lay with my blood sugar but was so dopey by then that I went to sleep instead of taking my glucose tablets so arrived home a lovely clammy, burbling wreck. After half a carton of fruit juice I was fine apart from the headache that still continues.
And oh yes the spondylolisthesis has kicked off too.Maybe I should be “pleased” that it is a respite from the cancer worries…?