Just two years ago I was diagnosed with terminal mesothelioma - asbestosis in the lung lining. I was given a prognosis (life expectancy) of 4 months.
I'M STILL HERE
LAST AUGUST I BOUGHT A REPLACEMENT VAN (2013 BURSTNER) I USED IT A FEW TIMES LAST YEAR AND AM PLANNING TRIPS FOR 2019
The cancer has now spread to some of the vertibrae in my spine and that gives a lot of pain. Today I had my first radiotherapy session to try to reduce that pain so I do not have to rely so much on medications.
Have faith and life can go on
May Buddha Bless You
Just frantically trying to get hold of my consultant surgeon and breast cancer nurse as I have some questions I need answered before the planned operation on my lymph glands this Thursday. There has been very little communication with 'assigned cancer nurse'. They need at least 5 more cancer nurses at this particular hospital to cope with demand, and I'm guessing the shortage is not unique across the country.
Anyway, once you're in the "sausage machine" I've found it can be hard to get answers to questions that arise as you begin to get your head around the whole process.
I want to know if I can get a full body Cat Scan to determine if there is cancer anywhere else in my body. It is not routinely offered and I am prepared to use a bit of my small pension pot money (read camper van money!) to pay for a scan privately so at least I will know one way or the other, rather then b*gg*ring about having a surgical op here then another one there as they uncover stuff bit by bit...
Suspect I have cancer in the other breast now and no, this is a fact, not me being paranoid. The nipple is inverting itself, a sure-fire sign that cancer is present. So I may need another mastectomy and all the time this goes on I have no idea if or where there may be cancer elsewhere.
Cat Scans are not offered routinely for breast cancer I guess, but I wonder why not? Is it just a money/resource thing?
Makes sense to me to have the full picture first before they cut me up some more! Does that seem sensible to you guys? It does to me.
Anyway, I shall see what the consultant surgeon who wants me under the knife again has to say for himself
PS I am getting my fighting pecker up! After all, these b*gg*rs earn around £100k so should be made to earn it
Last edited by mariesnowgoose; 16-04-2019 at 12:50.
yes you can buy a scan and even negotiate a price for it.
They now know cancers have a "story of what will happen" it bit like knowing your nodes have got to come out.
The best advise I can give is contact Macmillan Cancer Support and talk it over.
We might have the NHS but they just don't talk and explain things to you.
The only cancer nurse available at the hospital was working away at Darlington today, but I've been promised by the consultant's secretary (who knows I'm not happy - understatement!) that the cancer nurse will ring me back tomorrow. Doubt whether that will get me anywhere either. Secretary also told me that they actually need 5 more cancer nurses at the hospital to cope with the number of caseloads, but they only have two. Says it all, ey?
Back to GP - phoned my practice and all 'phone calls' with doctors are fully booked (!!!) for the next two days and no spare slots, they eventually got back after I kicked up a fuss and said they had a slot with the senior practice nurse at 3 this afternoon. I have been. Sympathetic but no further forward, they have no access to hospital notes and couldn't interpret them anyway. The agreed it was dreadful I'd had no follow up support, but could only offer to be there if I needed to talk.
FFS! I am sick of being fobbed off and TBH I am getting really, really angry now.
Sometimes we women are treated as second class citizens. I feel like that right now and I've had quite enough of it.
1. No response, support or feedback from the hospital
2. No support from the GP practice
It's a bloody disgrace.
I may cancel the operation on Thursday on the grounds that I haven't been fully informed at this stage (and not because I don't want it or think it's necessary) then try to find out how to go about getting a private PET/CT scan. How I go about that I don't know, but I will just have to find out myself, won't I? There's nobody else to help me with this except myself so I'll just have to get on with it!
Life: unfinished threads in a never-ending tapestry
There but for the grace of God go I
I had a friend at work who phoned round for CT scans and bargained down a nhs hospital for the best price.
Its not only women, Sometimes we women are treated as second class citizens
But your not the only one, my December appointment was cancelled 3 times,
seen in January doctor says I need more surgery and I will phone you,
scan appointment arrives in March and had surgery last week,
I never got that phone call or a doctor telling me what they were going to do.
I walked around with my phone in my pocket for months waiting for that phone call.
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