[kayleParticipant]

Hello everyone!
I used to be asleep by 10pm….anyway, just to say to aJane silver linings, my youngest brother still lives in Brid, and I lived in Hunmanby for a good few years before moving to Scotland! Small world!
And Naren, mind over matter…I thought that was easy, until MM hit me. However, I think the journey through the chemo sounds much harder than the condition, and this is exactly when we need to pull up our boot straps and dig in! Excuse my metaphors!
I know it gets better…..Kevin, Jane and Rebecca have told us it will.
Keep on getting up each day, do what you can do that day, don’t beat yourself up. Guilt gets us nowhere. Have courage…..
K xx

[kayleParticipant]

Morning Jane, Kevin and nbc!!
We’ve all been busy reading and responding which is truly lovely….
Although I was just saying most days my brain is mush! I haven’t yet started my chemo journey as fortunately, the MM has not done any damage, but no doubt I’ll have off days during that process. I’m pleased that NHS have moved very quickly for you, nbc, although not a good sign, it will help in the long run. As Kevin says, he’s still here, 15 years on, and that gives me so much hope and courage.
Jane I’m from Whitby originally, a Yorkie through and through, and we are the same age!And also like you, I never ever thought in a million years I’d be hit by the Big C….accessing MacMillan nurses, and researching the effects of these big pharma drugs and chemotherapy……Although my body wasn’t quite the temple it should have been, I have become much much better at self care….so, next week I’m expecting to start the next phase of this journey. Good Luck to you Jane, keep the chin up lass! And speak again soon…Kayle

[kayleParticipant]

Hi Kevin
Thanks for telling me you’re still here after all these years- that’s a song quote btw!

Thanks for that, it’s true isn’t it, we spend time dwelling on what ifs, what could be, then start to forget to live now. I know, I’d been doing just that….

I’ve just said something similar to a new person (nbc): Make memories now, but What strange times we are living through, but we are living through them!

Am glad those words rang true to you….
Speak again soon
kayle

[kayleParticipant]

Hi nbc
Scary posting on public forums: I think there’s a few of us on here who would never usually do so.
First and foremost, all and everything you are thinking and feeling is normal. I was diagnosed in August, and haven’t yet started the chemo. I’m 53, and the hardest thing was telling my boys, but they are adults. Most importantly MM responds very well to chemotherapy, and there are many, many therapies that are being used and trialled – and there is plenty of life left in you yet, there is still time for Graduation, careers, homebuying, maybe even wedding and grandchildren…..
The first week I lost to feeling sorry for myself, but as that isn’t who I usually am, I came out of that. But you are still in the extremely early stages of biopsy, diagnosis, acceptance..learning the meds, side effects and so on. It is all bloody traumatic. It does feel like your world is coming apart especially during a pandemic, but you know what, you will wake up one day soon, and MM will NOT be the first thing to come into your mind, or the last thing at night. There are plenty of people on here who will support, who you can sound off to. Try not to look too far ahead, remember that today, now, you are still here. Plan to make memories but try not to dwell on becoming a memory. When you feel good, treat yourself, enjoy time….I don’t know your circumstances but I real hope this has helped….like I say there will be others on here who will support. Take care, goodnight xx

[kayleParticipant]

Hello Mark D, Dennis, RebeccaR.
It’s sobering to see so many of us out there, and although as Dennis perhaps has been informed, this condition is often seen in older adults, I’m surprised how young you/ we all are!
But am glad so many of you have taken time out of your day to write and respond on here. Thank You Mark and Rebecca for the supportive messages: no two people or MM present the same, but it is heartening to hear of more and more living long and active lives…although I do dream of days getting back to my Table Tennis, or a wee bit of cycling- I’m now more hopeful that those days will return!
On initial diagnosis I was numb with shock, even though GP and consultant had stated it was very possibly MM: I then spent days researching, planning my funeral, and generally behaved oddly. I now sleep and wake without MM being the first and last thing on my mind- which I can’t quite believe would ever happen. Although I expect to start in one week’s time, I’m still busy organising for upcoming virtual events, birthdays and Xmas!! So, life goes on, and I say to folk, I could get hit by a bus first ( I keep well away from them), my mood lifts theirs. So, trying not to be a memory but to keep making memories is currently my goal….respect and best wishes to you all xx

[kayleParticipant]

Hello all, from a wet and windy Orkney!
My diagnosis came in August this year, MM (asymptomatic): and at 53, active, and working, to having to go and lie down twice a day, I wonder how much is my brain, or is it really as asymptomatic as the professionals suggest? But, once I’d got over the initial shock, you then start to plan your treatment alongside the consultant and MacMillan nurses. I’ve gone through a lot of dental work, and expect to start CRD chemo in a fortnight.This should be followed by autologous stem cell transplant. Has anyone here gone through all this and returned to work full time? Although I’m happily married, and we are both going through this, it is still a very lonely journey. Telling my loved ones was the hardest thing I had to do.
Anyway, I’m still here, and very much upbeat….and I will NOT be beaten by a dental bridge ( the pain!!)….I know some areas have support groups, but is there anyone on here based in Northern Scotland, Orkney or ShetLand?? Happy Sunday to you one and all!
K

[kayleParticipant]

Thank you both, Debs and Kevin. Really appreciate your very quick responses. It’s good to know they can still perform transplant after chemo. I did email my nurse but had no response. I’ll be seeing the consultant next week. Feel better just knowing. What a year this has been….I’ve never felt the need to join a forum, and this is the first time I’ve done so. I’ve got a partner and friends and family, but often feel very alone. Good to know you’re out there…

[kayleParticipant]

Hello all, newbie here. Diagnosed two weeks ago. About to start chemo with the triple rev- edX and cyclophosphamide. My only concern ( well, immediate one!), is that I’m starting chemo but no- one has mentioned a stem cell transplant. Either self or donor. Can a transplant be performed after chemo? Family are really concerned…

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