Yet another rejection from the health fund for an extension of my main drug!
I thought it through a few days ago.
The drug I'm on is no longer working efficiently (though it's sort of working in the sense I am "getting worse", just not very fast)... but ... I am not yet sick enough for the next new drug up-the-ladder/down the slippery slope
I am not all that sick or in pain (on a day to day basis) so I suppose they expect me to carry in a sub-optimal, essentially untreated condition till the cancer spreads to my liver, lungs or brain ... and in the meantime "treat" the new and progressing bone tumors with painkillers
Does this seem absurd or just bureaucratic and unlucky?
The biggest laugh will be when I turn up "crook as a chook " (translation: very ill indeed with massive spread to internal organs) and they say "Where have you been for the past x months?"
Your "Crook as a chook" comment reminded me of when I was teaching and a visiting teacher from overseas introduced staff to a teaching game where the answers to the questions were meant to be a pair of words that rhymed. One of her answers was "sick chick" and she was somewhat bemused to have one of the teachers give "crook chook" as her answer.
Thanks everyone
Going to the oncologist again for another letter.
The health insurance (this time) have written to him exactly what they want to know. I will go up with that letter!
My oncologist even phoned up Pfizer (here) to send him relevant papers on usage in similar cases to mine and he will pass them on with the request. Anyway - everything's on hold till Sunday (first working day of the week here).
No worries till then ...
I do so hope things work out well for you, Galilit.
Today I received a booking for abdominal scan(s) because it seems there is a possibility I have ovarian cancer. I have been feling not quite right for about five or six weeks ; not all the time but not quite right. Blood test showed CA125 raised so further blood test to be taken next Thursday and scan(s) on 1st December. They're obviously not hanging about! I had not thought of cancer, because no underarm nodes or anything from the lumpectomy. GP was surprised since I have had only one bit of one ovary since hysterectomy 47 years ago! No problem, I can deal with anything so long as I have all the facts!!
Oh, @Galilit , that is maddening. Hoping and praying that you get the care you need. Hugs and good thoughts for all here including @NicoleMR and @SusanDoris
Second blood test Thursday, result yesterday. First was 50.4 and this one is 52 point something. So now I wait for ultra-sound on Wednesday. I shall of course be over the moon if all is clear, but I think that is more than somewhat unlikely!!
I did some reading yesterday about ovarian and endometrial cancers and learnt one or two things I didn't know before, but the more I read, the more I realised how very fortunate I was to have encountered forward-thinking Consultants 47 years ago when I had the hysterectomy.
Back from my chemo and checkup with my surgeon. They couldn't draw blood through my port again, and had to use my hand, But aside from that everything went well and the checkup with the surgeon was good.
Well my sister's friend Ann has passed. She never got the chance at the experiemental program. Also had an elderly friend with advanced dementia pass last week. She had a mass in her abdoman but since her dementia was so advanced it was decided to do paliative care. Damn it's been a crappy start to the Christmas season.
I got my new drug today and a month's extension on my ongoing Magic Pill which is working sub-optimally but I am not sick enough for anything else yet.
Though I still have to make a request for the next dose of it in a fortnight ... then two weeks after that, then monthly. I am now using a private insurance to pay for the Magic Pill since the Public Health system won't pay for it any more. (It costs 75% of our monthly not-especially-high income so it's a bit hard to finance ourselves on an ongoing basis! )
I like my doctor's thinking, by the way. It's an interesting situation and I think he has found a good solution to it.
Though he cannot influence the Public Health.
I am not even half-dead yet so I think it's really rotten of them
Thinking of you Galilit and hoping that the combination continues to work well for you, Having a doctor who ekes the best they can out of a crappy system is a plus, but I wish the system itself were better.
I actually would not describe our public health system as "crappy". It's worked well for me till now if I am honest. (And I live in a rural area too)
This is the upside of a being a nation of hypochondriacs and mothers who encourage their children to be doctors!!
Though I am furious (not to mention fraught and distraught) over the past six weeks. Why punish people for doing their very best to survive even beyond statistical norms?
Comments
And all those quietly suffering or caring.
You're doing well. I was a wreck on Taxol.
I thought it through a few days ago.
The drug I'm on is no longer working efficiently (though it's sort of working in the sense I am "getting worse", just not very fast)...
but ... I am not yet sick enough for the next new drug up-the-ladder/down the slippery slope
I am not all that sick or in pain (on a day to day basis) so I suppose they expect me to carry in a sub-optimal, essentially untreated condition till the cancer spreads to my liver, lungs or brain ... and in the meantime "treat" the new and progressing bone tumors with painkillers
Does this seem absurd or just bureaucratic and unlucky?
Your "Crook as a chook" comment reminded me of when I was teaching and a visiting teacher from overseas introduced staff to a teaching game where the answers to the questions were meant to be a pair of words that rhymed. One of her answers was "sick chick" and she was somewhat bemused to have one of the teachers give "crook chook" as her answer.
Likewise pissed off+++ re bureaucracy and who gets what on the drugs front
Going to the oncologist again for another letter.
The health insurance (this time) have written to him exactly what they want to know. I will go up with that letter!
No worries till then ...
Today I received a booking for abdominal scan(s) because it seems there is a possibility I have ovarian cancer. I have been feling not quite right for about five or six weeks ; not all the time but not quite right. Blood test showed CA125 raised so further blood test to be taken next Thursday and scan(s) on 1st December. They're obviously not hanging about! I had not thought of cancer, because no underarm nodes or anything from the lumpectomy. GP was surprised since I have had only one bit of one ovary since hysterectomy 47 years ago! No problem, I can deal with anything so long as I have all the facts!!
Praying, @Galilit and @NicoleMR and all here.
I did some reading yesterday about ovarian and endometrial cancers and learnt one or two things I didn't know before, but the more I read, the more I realised how very fortunate I was to have encountered forward-thinking Consultants 47 years ago when I had the hysterectomy.
You are doing so well.
I was a wreck on Taxol
I had my scans this morning and, much to my huge relief, nothing nasty in the way of lumps found. So it's back to GP for further investigations.
Though I still have to make a request for the next dose of it in a fortnight ... then two weeks after that, then monthly. I am now using a private insurance to pay for the Magic Pill since the Public Health system won't pay for it any more. (It costs 75% of our monthly not-especially-high income so it's a bit hard to finance ourselves on an ongoing basis! )
I like my doctor's thinking, by the way. It's an interesting situation and I think he has found a good solution to it.
Though he cannot influence the Public Health.
I am not even half-dead yet so I think it's really rotten of them
Hooray for magic pills and lovely to hear that they are working for you.
This is the upside of a being a nation of hypochondriacs and mothers who encourage their children to be doctors!!
Though I am furious (not to mention fraught and distraught) over the past six weeks. Why punish people for doing their very best to survive even beyond statistical norms?