Hi again
Well my trip to the oncologist on Monday went much as expected. He did have a ‘discussion’ with me about chemotherapy and offered it to me as ‘standard’ treatment. But when I questioned it, it was basically along the lines of “we are offering something which will make you feel rotten, your hair will fall out, it will last 4 or 5 months, your immune system will be suppressed so you are open to any infections (think...4 grandchildren aged 5 to 8, always with snotty noses once school term starts in September)...and all this, with people with your particular cancer, 3 in 100 will have a better chance of not having a recurrence, but we cannot possibly tell if you will be one of those 300. And anyway, we will be keeping a careful eye on you for the next 10 years”. He almost seemed relieved when I declined the offer! So it’s radiotherapy, probably for 3 weeks, and he’s given me my first prescription of Letrazole (complete with warnings of menopausal symptoms, oh what joy!) I will be picking that up from the pharmacy shortly and then staring at it for a few days, plucking up the courage to start it. He also mentioned biophosphonates...I’d not heard of them before, so I had to research. He will send me for a dexa bone scan to check my bone density now.
After finding the NHS brilliant in a crisis, in terms of my speedy diagnosis and surgery etc, now that I am in the follow up stage, the frustrations have started. I should have a group physio therapy session approx 5 weeks after surgery, and I did have one given me for 5 weeks after my lumpectomies, but couldn’t go as I was in for further surgery. My BCN assured me she would refer me for another appointment about 5 weeks ago. Nothing heard so chased it up last week....she hadn’t done the referral, so they pushed it through last week. Nothing heard, so chased it up with BCN, who said I needed to chase it up with physio appointments. 30 minutes on the phone with “your call is important to us....you are number 1 in the queue”, only to be told no record of referral. She went and saw the physios, who eventually found it on their system, but nobody had done anything with it. Reckon it will take another week before they can raise an appointment for me. I asked if as it was a group session, could they not just add me to the next group? Oh no, the system doesn’t work like that, far too easy, common sense doesn’t come into it. Fortunately I feel that I have got pretty good movement back.
Also radiotherapy is supposed to start within the window of 6 to 12 weeks after surgery, and as this is to do with my left side lumpectomy which was on 21 June, should start 13 September latest. But Oncology told me they are fully booked for a month. They are hoping to fit me in with cancellation, so I just sit and wait for my phone to ring and cannot make too many plans for anything. How soon will you get your radiotherapy?
The predict tool gave me a 73% chance of being alive in 10 years without any further treatment at all, or 77% with radiotherapy and hormone therapy. That’s good enough for me! I did discover that my left side tumour was 26mm, not the 15mm they had measured from my scan. And the ‘tiny 8mm’ tumour on the right, was in fact 35mm!
Sorry this is so long, hope you haven’t given up reading it, but it is quite therapeutic to get it all down and share it with someone in similar position. The short break was great, and I did swim in the sea twice, and managed to change reasonably subtly behind a towel. I’ve since been on Amazon and ordered a large beach changing robe!
