Re: Incurable yet treatable

Val I am glad, because I believe that encouragement well help you more than sympathy.
You always seem very positive, but you can always send me a pm if you need to talk.

Re: Incurable yet treatable

I have Non Hodkins mantle cell Lymphoma and have been recieving a monthly assessment including blood test, followed by picking up my drugs for the month 2 days later.
I was diagnosed with both bowel and lymphoma BOGOF several years ago.The bowel was treated very quickly, then wait and watch for the lymphoma for several months, until out of the blue they commenced chemo.
I shaved my moustache and head and a cycle of treatments every 21 days, returning to work soon after they finished.
The symptoms returned although slight and my consultant put me on Ibrutinib which I have taken ever since with some side affects, these include random pimples, finger nail weakness, dry skin, although the list on the packet is very long I believe I have got off lightly. It has been over three years now, I work 4 hours a day, I am 71 next month, so feel extremely lucky.

I have only ever suffered from the treatment, never from the condition.
The doctor told me at the time of diagnoses that lymphoma was incurable but treatable, and that has proved to be the case.
My philosophy is Que Sera, Sera, take each day on face value, never worry about possible future problems.

Hope my experience helps put your mind at rest Ffosse.

Re: Incurable yet treatable

I also hope it helps Ffosse Bruv. My sister has Waldenstrom's Macroglobulinemia, which is also non curable but treatable. She has managed very well for the last 12 years since being diagnosed. Being diagnosed with cancer must be very frightening, especially if outcomes are not certain.

Re: Incurable yet treatable

Ffosse, my heart goes out to you....

Being bipolar myself, life is hard enough, without the added diseases like cancer. I don't know how I went through it and kept sane, but somehow I did.

I had to do a lot of crossword puzzles, because the only way I could cope was to concentrate on something that took a lot of thinking. Our brain is funny, if we let it, it will concentrate so much on a certain thing, that it will make us very sick. We have to drag it back to focus on something else.

Re: Incurable yet treatable

Join the club matey. About 18 months ago I managed to pick up (don't ask me where or how - no-one knows) a lovely little disease called Thrombocytopenia. The Doctors have told me that it is incurable, but manageable, but it requires weekly blood tests and injections into the stomach to maintain my blood platelet levels.

Re: Incurable yet treatable

The main thing is that it's treatable which means that while you are being treated someone out there may well discover a new and better cure.

There have been big advances in cancer treatment in the last twenty years and it's now possible to prolong life with some incurable cancers for decades rather than just months. A good friend of mine has incurable peritoneal cancer. They have managed to treat it so she currently has a great quality of life, but she knows it could return at any time so she is just enjoying life to the full while she can.

Re: Incurable yet treatable

Thank you Twink.

Re: Incurable yet treatable

Thanks, for replying, everyone - it's good to see that I'm not alone. It's just a matter of trying to have lots of little nice things to do. Today I get to finish my bottle of Malbec - half yesterday and half today - then there is a book I want to start reading.

There is a service the hospital offers called psychoncology - I think it's basic counselling for people with both MH problems and cancer. The only reason I haven't taken them up on it is because of more appointments and taxis to the hospital - my treatment is already a little draining. However, next week I'm going to try to make it to the hospital by bus. It's a half-mile uphill on the way to the stop but I'm going to try it no matter what, although I know I'll have to stop to catch my breath.

The bus is frequent and goes straight to the hospital. When I go home it will be half a mile downhill which should be easier.

I can't believe I used to walk 8 and 9 miles a day as a hobby - it got me places, got me fit, and I'd love to be able to do walks again. It's one of the healthiest things going. I've felt terrible getting all these taxis - it's not just the expense (I got PIP now thanks to suggestions from people on here), it's just that it makes me feel such an invalid.

But I still enjoy the evenings, that time of 6 to 8 when the day is winding down and i make a mental checklist of anything I haven’t done or still have to do and can then unwind before going to bed. I don't have a TV so podcasts are my main form of entertainment and always send me to sleep. I should be greatful, really

Re: Incurable yet treatable

I have certainly learnt a lot from this thread, so I say thanks to Dreamy for starting it. As you say Dreamy, you are not alone.
You have explained a lot of things, even though I knew them, but it is good to let others know.
I will read all through again and will keep an eye on this thread.

Re: Incurable yet treatable

This isn’t the main thread, just a companion thread I started today, Sweetie.