Oh I am so fed up. Apologies in advance for the rant, especially as I have read of yet another of our members passing away, I feel so sad and scared, it feels so selfish to be having a whinge.
Since being told I have extensive bone metastases last June ,I have felt sidelined and pushed aside by my hospital, as if I am no longer important or intelligent enough to comprehend information or be given time or choices in my treatment. I go to the Oncology clinic every 3 weeks now to receive the briefest of consultations with my Oncologist, who is assisted by a Health Care assistant. I don’t get to see a nurse to ask any questions. I am on Capecitabine and Vinoralbine orally so am pretty tied to a tablet routine and blood test routine then have to ring for results, BUT why do I feel as if I am just a neurotic nuisance?
In November I applied to my insurance company for a terminal illness payout. I had discussed this with my previous oncologist (who I changed as she was the archetypal grim-reaper) and she was not prepared to say that I would die within a year as per insurance company requirements. I re-discussed this with my present Oncologist and he said he was prepared to do the paperwork as my prognosis was uncertain and he could not say for sure that I would still be alive in a year’s time. After many phone calls to Onc’s secretary chasing the report (always being told it was not a priority) the letter went off without a copy being sent to me for approval. Anyway, I had a phone call from Insurance company last Friday saying their medical officers felt my prognosis was “not too bad” at the moment so claim turned down. The policy expires next year so I am in the very last period of time when I could have put in the claim. I have had to give up work so that money would have helped so much. I don’t understand how they can stipulate a time limit for being terminal.
My head is a mess. I feel let down by my first Oncologist who failed to spot signs of secondaries in 2010/11 then told me my CT scan was clear last June only to recall me a week later to say it was far from okay. She offered me no further treatment when Exemestane failed to halt my rising tumour markers and sent me away to die – saying 18 months was the median survival time for someone with secondaries. I went for 2nd opinion at the Royal Marsden and whilst they suggested further chemo (which I am now on) their letter was not very encouraging either saying I had relapsed very quickly after initial treatment and whilst further chemo might help slow things down, this was unusual. Reading on the bone mets and other threads I realise that many of you ladies have had great success with oral chemo but how many have not?
I feel a nuisance every time I have to call for help, which is not often as I am an experienced nurse and do not panic at the slightest twinge. I called the out of hours service last week in the early hours as I was experiencing severe chest/gastric pain, brought on ,I believed , my evening dose of Capecitabine. A Nurse Practitioner and student nurse came to see me and concluded that it was not heart or embolism and suggested a warm bath and fizzy drink, nothing for the pain (I had tried my usual remedies including Oromorph). I suffered all night and next day as couldn’t get to see my GP until 5.20. She diagnosed oesophagitis and gave me Buscopan and Lansoprazole to settle things down.
3 years ago I was an intelligent healthcare professional getting on with my life, now I feel like a child with no access to details about me (refused copies of my latest mri & ct scans) no say in what happens to me and tied to the hospital with so many appts. Of course I am grateful for all the care I have had but the recent patient satisfaction questionnaire I received rather summed everything up with its questions about privacy, dignity, communication etc and one of my real bugbears – “do the staff ask by what name you would like to be addressed”. No they NEVER do and I hate being called by my full name as it takes me back to my childhood days. No privacy as an in-patient that’s for sure.
Just to add to everything, my son, now 28, was diagnosed with Non-Hodgkins lymphoma in 2009, 3 weeks after my BC diagnosis, we went through chemo at the same time and it was my worst nightmare come true. He has been well up until recently, and I try my best to support him and my daughter to get on with their lives and not let everything be spoiled by what has happened and what is happening to me. He is now having scans for persistent back pain which, although probably just as a precaution is just so worrying. I just don’t know how I will cope if he turns out to have secondaries too, surely life can’t be so cruel, yet I know it can.
Sorry for the rant, I may not even post this, have done it as a word document in case I lose it. Am not expecting anyone to come up with magic answers. I have rung one of the BCNs and she is going to try to attend my next Oncology appt. Thanks for listening. Hope everyone else is having a better day.
