Post 297: Self advocacy rules my life.
The good news is that I’ve got a bright head full of complex thoughts (except for the simple but stubborn words that hide inside the cerebral jelly my brain is turning into) and apart from my frozen shoulder I’m not suffering.
The other thing is that the lovely oncology nurse that sits between my oncologist and me.
I’ve missed her during the 2.5 months she’s been off work, sick.
But she’s now back!
That she’s returned (from outer space, I just walked in to find you…), I sent her a “welcome back” email last week in the hours before all the nonsense happened to me. So my kind, light and very brief “welcome back” has been trashed in favour of a more Mr U-like, self-advocacy nightmare to her, as I was today.
But the morning started quietly and although I had the memories of shouting curtly at my Darling at bedtime, leaving me in tears and her in shock and tears, I knew I had to get some paperwork done. Believe me when I say I hate myself for the way I behave sometimes.
The 6am barrier had been raised on a new week for admissions using Anima (the online Doctors surgery triage service) and I was happy to use it to get my first job of the day done.
My frozen shoulder is now not affecting me much but, saying that, I’ve found a route around nearly every inconvenience and I’m getting around much better. Without much pain. Without using it at all is the obvious reason. But it works.
I started to get through the pages of filling in the Anima triage and had saved a missive in “Notes” of a description of what’s happened since the last Dr saw it, in the hope that I don’t get locked out on the administrative timer (that is set for each online query); that way my sincere hope — and the experienced user’s hope is — a timely success every time it’s used. Speed is crucial.
The first attempt locked out on a page 80% of the way to the finish line — very frustrating — but “what man has done — man can do again”, the mantra that still goes through my head from that work colleague that always said that when I had gone wrong on a piece of work he was mentoring me with, bless him. I was a nightmare apprentice to him.
He doesn’t know how much I’ve used that saying when I’m busted and failed. I just get up again.
Thanks, Anthony.
So, at the second time of asking I managed to get to the end of the Anima online horror and could relax.
That was done and all about it.
The time was now well past 8am and I had swallowed the second pile of pills and the day was progressing so well I put the TV on and tried to find something amazing to watch.
While I don’t do murders live or documentary series about killers, I am left with an array of Korean series I love, but I’d like an easy watch sometimes, like today. Eventually I found The Lincoln Lawyer. An easy watch and a guilty pleasure.
9:09 — ping. Nina sent a message. It was an informal “glad I’m back” email and also spoke of annual leave to come while we were also away (in warm and sunny Tenerife).
They were probably the first times we’ve not asked something of each other, ever. Great.
But I thought it proper that I engage the next gear and let her know about Saturday’s bloods and sneaky infection.
The replies were now getting more serious and there were asked a whole load of more pertinent questions.
At some stage my breakfast was brought up by my Darling, on a tray, and while it was devoured, I dreamed up decent answers for the next email reply while my nurse was looking out for my ENT (ear, nose and throat) appointment for the MRI neck investigation.
Anima came back with a Thursday morning appointment for my shoulder and the day looked to be going great guns.
More TV was needed — in bed. Even if it was gone midday.
Yep, I was still in bed, (in my office bedroom).
Ring ring (the landline rang).
This is pretty unusual these days but my O.N. (oncology nurse) uses as much as the hospice nurses and drs.
Now there was a bit of a chase to the phone before it went to answerphone. The startled cat, who had been allowed upstairs on this rare opportunity, to settle on my lap, away from all things hostile to cats that’s happening in the kitchen, jumped off my lap with a little help from me. But, I missed the pick-up but my Darling downstairs was far quicker than me.
She brought the phone upstairs — it was the hospice.
After the preliminary hi’s we descended past the usual pain relief issues and onto the weekend’s A&E episode. It was an extended chat. In fact this call ended up a half-hour long call and covered all aspects of my bloods, infections and MRI tests to come. She suggested a few things to do and was amazing. She would ring back tomorrow when she could get a look at my e-reader info and see if she can help me along. We both wanted myself (and my Darling) to go on this holiday — and left it at that.
On the advice of the Hospice nurse, I got onto Anima again and filled out a new form to ask for help with an assessment of my bloods before I go away so I could tell my holiday insurer the true story of these new issues. This time I did the form the first time and I was dead pleased.
So, that’s an appointment for my shoulder 
a call back from the hospice
nothing from MRI appointments 
my O.N. (oncology nurse) giving me a ring back at 3pm
I had lunch. Phew. Carbs and loads of fruit — lovely. This is the only time I had for the Macmillan forum and a bit of TV.
In the back of my mind, far away, was a couple of things for later: the energy meter readings (a coaching session for my Darling) and a response to the counselling email.
It was that required an answer to either, continuing with another counsellor in place of my poorly sick one I had, or waiting for her to come back.
This could be ages to wait as it no little problem. It’s her back.
I’m still not decided.
3pm and ring ring — the landline again, with my O.N. (onco-nurse) ready to chat.
I can tell you now that this was an hour’s catch-up ending in an arrangement for a hasty blood test.
But it was brilliant to hear her voice and have her (nearly) working for me — two heads are better than one.
We covered the catch-up and the possible issues since not having any treatment and moved on to the weekend.
She had found out that radiology had now declined the MRI. Earlier it was pending. That was not so much disappointing as it was diagnostic. Their decision was based on necessity, but there was no necessity. This confirms my thinking (and my O.N.’s thinking) that there’s nothing there in my neck.
What that alludes to is a more likely flare-up of my existing cancer somewhere, which might or might not be easy to locate.
The thing was that Saturday’s bloods were not checking liver and PSA which would, with the CRP, have said more to A&E than just a guess that a slight anomaly in my neck (from the CT Scan) could be the cause. I think it’s a ghost.
To solve this problem and move on — and I was on my O.N.’s wavelength immediately — was a new blood test like the oncology department thrive on.
My O.N. asked if this was ok.
Now, as I understood it, the crunch here was the fact that if this was successful in finding the usual “signs and markers that are telling us the cancer is growing again and we will offer you treatment”, I would be talking to my holiday insurer saying that my oncology team have offered new treatment. However, if not, and my bloods are good, we will be saying that “da de da… your bloods are ok”, and ENT (ear, nose and throat) are searching for the infection and a ghost in my neck.
“I choose to go with the bloods, thanks,” I replied to my O.N. after nanoseconds of thought, and we were off.
A new online booking service for blood tests is the new local “Phleb” idea. I checked for an availability. There was only one left and it was fairly local at 17:30, which I could easily get to, and a booking was confirmed, all done while my wonderful O.N. was on the phone.
Lastly she said, “I’ll now send you the blood form to take with you.” “Goodbye”.
I got smartly out of bed, after filling in the picture to my Darling, got the form printed (with a lot of my Darling’s help), got dressed and we shot out the door.
The arrived at the local scanning center and the blood nurses were magic. They took the bloods in seconds and we were out the door before we were due in to have them done. Such efficiency. NHS we love you
So we drove home happy in the knowledge that the blood test will eliminate one thing and cast shadows over others. Tomorrow will tell.
We had our dinner then an age-long chat with the kids up north. We caught up, they caught up, the cats caught up (on the covers after waking from dreams of mice and cheese). In fact, by the end of the call we were so tired we went to bed.
At last.
The end.
Good night
