|The caring, approachable and helpful face of my health care 'professionals'|
First, to recap my current shitty condition. I have been removed from the trial at the Christie due to breathing problems. The Clinical Trials team there now have no interest in me whatsoever and, despite being told they would continue to help me, have on the two occasions I did contact them told me to contact my GP not them. Message received.
After having been ill in hospital at the end of January, followed up with two weeks bed bound at home with faecal impaction, my health had obviously deteriorated quite dramatically and I was not surprised, when I went to see my oncologist back at Shrewsbury in March (when I was finally well enough to get to an appointment) to be told that I was "very poorly" and could have have no more chemo as it would shorten my life rather than prolong it.
The oncologist did, as a last chance, prescribe a hormonal drug, anastrazole. I haven't had much luck with hormonal treatments in the past but it's certainly worth a try.
When I saw the oncologist I asked for a CT scan. She didn't seem particularly keen on the idea but agreed to arrange it and said she would see me again in four to six weeks.
Thanks for bearing with me through the back story, now on to yesterday's shit storm.
As I had not yet had a date for either the scan or follow up appointment with the Shrewsbury onc, I rang and spoke to her secretary. She informed me that the onc had NOT in fact requested a scan nor were any future appointments arranged to see her. This is despite the onc agreeing to arrange both when I saw her, the other-half was also present, on 17th March. The secretary was unhelpful. She refused to pass my concerns on to the onc. And could not make appointments for me.
Shitty secretary did explain that the onc had sent a letter (which nobody deigned to send me as usual) saying that my care had been passed to the Palliative Care Consultant at the local hospice. In fact, I already see her regularly. It seems unbelievable to me that I should be denied oncology care (the hospice doc is NOT an oncologist) which actually taking a prescription prescribed by an oncologist with an aim to helping my condition.
Bloody Nora. I am under no illusion as to the state of my health. I'm the sodding one on oxygen for the best part of every day . However, I would actually like to receive proper care while I'm still around!
So that was the initial bombshell.
I then started phoning around like a demon trying to get all and sundry on my side to make sure I get a scan and proper care. I rang the Hospice nurse and, for the first time, found her a bit crap. She had, as promised, asked the hospice doc a week or so ago to put pressure on Shrewsbury Onc to arrange the scan. But she doesn't know if this has been done and everyone is on holiday this week blah blah blah.
Next, I bravely phoned the fucking useless breast care nurse (FUBCN) who I usually avoid like the plague. She has been absolutely crap since the day I was diagnosed. But any port in a storm. There were a few phone calls back and forward of increasing arsiness on both sides. The Shrewsbury Onc is on hol all week. FUBCN says she can't/won't arrange scan but will arrange for me to see onc as soon as possible on her return to work. I asked how I would be notified about the appointment date. The response? "I don't know". I said I wasn't happy, but would accept earliest appt. I said as I wasn't happy my official complaint (which I had already submitted via the PALS system) would still stand. "Well that's up to you" she snapped. "I'm just letting you know" I said, equally angrily. And that's how that it was left, with us more or less hanging up on each other. The woman has no professionalism and certainly no idea of patient care or cutting angry, sick patients some slack.
Then some added shite. The GP also told me that apparently I had been allocated a named (non clinical trials) Onc at The Christie, as I had requested when I came off the trial there. I chased this up initially to no avail but had left it of late as until recently I didn't feel well enough to travel to Manchester. However, unbeknown to me it had been decided, following a conversation between the Christie onc and the clinical trials doc there not to go ahead with the referral. Clinical trials had already washed their hands of me and have not seen me since I was discharged after my hospital stay there, now it appears they may be blocking my attempt to attend the oncology clinic there. This one may be a battle for another day. I have to admit I only have so much energy.
In fact after spending all morning ranting on the phone, I spent lunch time ranting at poor Sis No 1 who had come round and got her ears chewed off in thanks. Then I had a huge glass of port and lay down and thought about rainbows, kittens and the cost of hiring a hitman. I recovered enough to rant at Sis No 2 who rang in the evening. And had a most satisfying email from Sis No 3. I quote her here. I don't have her permission. Go on, sue me.
What "bloody thoughtless, stupid, rude, hard-hearted, uncaring, unprofessional, buck-shifting incompetence".
This morning I received a first class letter informing me that I have an appointment with the Shrewsbury onc next Thursday. I assume I was notified in this unusually prompt way so that Fucking Useless Breast Care Nurse doesn't have to actually speak to me. Suits me.
And that's the end of my rant. I am sick to the back teeth of trying to be nice and suck up to these sodding awful people, which has been my approach in the past. From now on they can all fuck off to fuck off land and when they've come back from there they can fuck off right back again.