I have not written anything for some time, but have been following you all. I suppose my little trip to London set me back and what with the weather, I have been feeling a bit low. However, about 10 days ago, I meet my oncologist and told him about London and the RM - he was not surprised, but we had a good laugh when I told him that I thought the COC had probably upset a certain person, and he agreed saying that it was rather like waving a red rag to bulls when talking in certain circles about the COC.
We talked about me getting on a trial and about some trials that I might be able to join; well on Friday I received a call from another consultant in London who is in charge of running trials and I am off to London on Wednesday.
I was excited by this news, but the words of beautiful Laura return to me, which were "be careful what you wish for" and realise that all of us on here are facing something new, chemo, surgery, new drugs, in the hope we find something to give us a longer, better quality of life but we live also in fear that it may not work - so it is with trepidation I shall leave for London on Wednesday, but one thing I know is that all of you wonderful people will be behind me.
A big hug to you all. Anne
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Will be seen at the London Clinic, Devonshire Place. Will let you know all.
Yes, my oncologist organized it - I told him I would do it, but he insisted he would do it - he is a very nice person and that is what is so important.
Take care my dear and talk to you soon. Hugs back. Anne XXX
We certainly will be behind you & hope all goes really well for you on Wednesday!
Just read your profile - have you still got all your animals? My cat is such a little friend to me & hardly leaves my side, especially now I am on chemo again for 1st recurrence.
You must have had such an interesting life in Italy! All that beautiful sunshine 🔆 I was brought up in Zimbabwe.
Don't have all my cats and dog, unfortunately. Lost four of the cats from old age, as well as the dog, but we have another dog from the RSPCA and two cats are still with us. I have also had three stray cats join us since. My daughter says they pass the word about my love for animals!! My closest friend is Becky she is always there for me especially when I do my infusions.
Yes I had an interesting life, joined the UN in Rome in 1979, meet so many people of other nationalities. You had an interesting life too, when did you leave Zimbabwe?
Yes my garden keeps me grounded and I also have an allotment with a friend.
I’m on the Athena trial and was keen to be on a trial as early as possible because of the high chance of reoccurrence and because I get followed up much more regularly than I would otherwise (sometimes a mixed blessing but on balance better than being left to watch and wait). Also statistically people on trials live longer (I know that may not mean me but I hope it may also help others in the future). I’m sure you know that CRUK and Target Ovarian Cancer are good sources of trial info.
Publicly funded cancer trials save more than 3 million years of life
Thank you for this article- I am going to send it to my MP as evidence to ask for funding to help people attend academic trials. I have to pay all my own expenses on my trial and feel that this is not what the nhs is about- that you can only stay alive if you can afford to.
Thats terrible Neona. I get my travel expenses paid and I’ve insisted that they pay for childcare if they keep me waiting beyond school pick up. Otherwise parents can’t do these trials either. Do you have a research nurse or coordinator you have talked to about it?
Unfortunately there is no funding fir academic trials as they are not sponsored by the drug companies. The drugs are paid for by Cancer Research UK I think. Drug companies don’t seem to be interested in the rarer cancers- suppose they don’t think they’ll make enough money. I have clear cell and was turned down fir an immunotherapy trial because the sponsor didn’t want someone with clear cell. Very grateful to be on this trial though but not much money left after travelling from Cornwall and staying in London.
Well, so, there's some hope of maybe finding a trial then, that's good news.
I wanted to ask about the COC protocol - did you start it? And are you glad you went to see them, or do you now feel it was a waste of time? I'm meant to be going there myself shortly, but I already know that two of the drugs they use in the protocol I can't take, so not sure its worth stumping up the cash and going along...
That’s understandable I suppose as you can’t take anything on a trial that’s not prescribed by the trial team- would have been nice to know what she actually thought of COC though. Hope the interview was useful- I found her to be very knowledgeable.
What a lovely oncologist you have - makes all the difference. Wishing you the very very best of luck with this new treatment - praying you benefit hugely from it. Love & prayers, Sundra xx
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On a lighter note.
Quick Question re parp
ACT QUICKLY
How quickly do you get scan results?!
Just to keep you up to date
