Please login to your my.Macmillan account.
If you currently have an Online Community account, you will be asked to create a my.Macmillan account the next time you try to login.
Don’t have an account? Create one now.
What is my.Macmillan?
This group is aimed only at people who have had an incurable diagnosis themselves, as we have had feedback that they would like a safe space to share their feelings openly among themselves.
If you have a loved one with incurable cancer, you are very welcome on the Online Community as a whole, but we would ask that you respect the wishes of people with incurable cancer and not post in this particular group. Instead, you will find really good support in the Carers group and the relevant cancer type group.
The Group's title is Living with It and so I propose to have a go at talking about living.
Like most others around this site I have been told that I can be treated but not cured. Then came the news much more recently that my cancer, the most aggressive type of prostate cancer, had become resistant to the standard hormone treatment. Future treatment would have to be the very latest available antihormone with its side effects and/or toxic chemotherapy. So I qualify for this group, here.
Now the good news; I started to get on well with my oncologist!! Having given me a couple of doses of RT to a pair of met sites in my pelvis, which had caused fractures, he put me on abiraterone and prednisolone. This was after he had explained everything carefully and had given me the choice of ab or chemo first. He also put me on tamsulosin in the hope of improving my waterworks problems.
Now, after just four weeks on this regime, I am feeling much better. I am less tired than I was and I have much more energy to do things. I think my brain is clearer because I can do sudoku again, a puzzle both my wife and I enjoy. I can walk better. Today I drove to the city and, while my wife had her hair done, I was able to walk from the car park to the store to buy a spare telephone handset. The walk was longer than I had thought and I didn't have a crutch or stick with me. I limped very little and got myself into a good rhythm, though nowhere near as fast as I used to walk. The pains are now so much less than they were that I look forward to time to do things again.
My appetite and taste for food is much better and I am trying to keep my weight steady by eating lots of fruit rather than sugary deserts. I feel well. I don't care that it's probably the side effect of the prednisolone. It's great to feel alive and look forward to the spring. I'm not bothered by side effects like hot flushes at all (too old to get them?) nor other effects attributed to abiraterone. I used to have swelling of my ankles and lower legs up to the knees. That has almost gone except at the end of the day. The more active I am now, the better I feel.
So, I'm very lucky indeed. I've responded to treatment when at times I thought I was on the downward path. I know things will go wrong eventually but now I can live and try to help my poor wife with her osteoarthritis that for her is a real pain. We see the Headmistress, her consultant, tomorrow!
I wish everyone on this site and in this group, well and cheerful. May better times come your way, you never know what may be just around the corner.
Lets hope we all get the most out of life and all remain here for years to come!
I think its great when things go well for anybody, even if its only a small thing.
Good luck to all of us x
Thats wonderful news David, wish the boss good luck with the headmistress tomorrow.
Best wishes to you both
Fantastic news David, I too am feeling the best I have since diagnosis two years ago, just got a couple of niggles I am trying to get sorted, but mostly I am nearly back to life before cancer. Although now I appreciate it a lot more and spend my spare time when not at work eating out, walking, reading, cooking, meeting friends for chats instead of the old me who constantly worried that my house needed some new bauble or cleaning and what would everyone think if my house was dusty!
Keeping fit is really good as it sets you up for any new treatments you might have to face and doing stuff "all by yourself again" just gives you back that feeling of being a person and not a patient.
Love Jayne xx
Thank you all for your replies and your good wishes re living with it.
Just to teach me that the old enemy has not gone away, I had a bad night with new leg pains last night! I'm better today and my wIfe and I had a good consultation with the Headmistress this morning. The drive in to the clinic was easier than normal because the atrocious weather overnight deterred many motorists from setting out this morning. Just rain, rain, rain and wind. Did anyone watch TV last night for the Richard Dimbleby lecture? One may not agree with all Christine Lagarde's opinions but she is a fantastic public speaker. I could follow every word, whether the camera was on her face or not, because her voice and enunciation are so clear. BBC newsreader, (you may guess), please note!
Thank you for your upbeat post and for your wisdom, David. No matter where I encounter you on the site, you always have something interesting to say, and helpful to others too. Thanks for just being here. It's good to hear that things are going well for you, in spite of the new leg pains. I'm sure, with the treatment, there's always something, but your optimism and spirit will carry you through. Didn't see Christine Lagarde last night but I have huge respect and admiration for her, mostly because she's got a wonderful brain but also because she is the chic-est and most stylish of older women. Can't hope to emulate her, of course, but I like looking at and listening to her.
If you have any questions about Macmillan we would love to hear from you
You can also follow us on Facebook, Twitter, Flickr or YouTube.
© Macmillan Cancer Support 2015
what are these?