Dear Dance in the rain
I am so sorry you find yourself here, I hope you find some comfort
I think I waited about a week or two - they were very keen to get me onto treatment after the diagnosis. There are many gentle, helpful friends on this forum who will help you as much as they can.
Xx
So sorry you find yourself in this threatening position. I waited a week to be told that the MDT agreed to refer me to Leeds, and another week to see them and be offered treatment.
At the moment it must feel like a ticking bomb, but things will be better once there's a plan. xx
Know exactly how you feel, having gone through the same experience in February this year. You will feel (comparatively) better once you have, and attend, appointment dates and know what palliative treatment they are recommending. I am sure you will be advised not to Google for information, but this site has the "experts" and people who have gone through/are going through the same journey. Take someone with you to initial appointments and take notes - you will not remember everything and will have questions you wished you had asked. Once you know more, and understand what is happening, you can start coming to terms with it - and there are always people here who will "listen" to you without prejudice. After all, as you said, we are all reluctant members of the same club.
Thank you.
Yes, google is not a good place to go is it but the trouble is it’s so tempting! But your absolutely right this is the place for finding out about everything to do with this horrible disease.
there are other places as well.
EG leukaemia care.
Bloodwise
https://www.cancer.gov/about-nci
https://livehelp.cancer.gov/app/chat/chat_landing American but doesn't matter
Hope this might help,
Hi
I am so sorry you find yourself here too - but welcome. I think everyone in this community knows just how hard the waiting can be. I think has it spot on.
I just read your profile and I am very sorry that your consultant used such blunt language. There’s an important distinction now emerging as a result of the many new treatments that have been developed in recent years - the difference between someone who has cancer that is treatable but not curable and someone who is terminally ill. Like you, I was told that I was “incurable” and it was devastating as I felt as though I was dying. That was three and a half years ago. There are many, many people here in this group who are well past their sell by dates. It’s important to learn to live with cancer that’s treatable but not curable but it’s not easy.
There are some things you can do right now that will help. Joining this community is a good one. There’s always a listening ear and a shoulder to cry on.
It might be a good idea to see your GP too. Different bits of the health service do different things and it’s helpful to understand this. I had a chat with my GP quite early on and asked where the GP fitted in. I was referred to a hospice where I had some really helpful counselling and some nice complementary treatments (including massage) and I have a regular phone call with the home nursing team. It really helps the GP to help you if you let them know what’s going on.
I read about your kids on your profile. I’m a mum of two teenagers too - 15 and 19 now. Have you talked to them yet? If not, it’s an area where google might help. I took some time to research how best to approach this. My choice has been to keep them informed and to be honest when they ask questions. It’s so hard to reassure them when I feel so uncertain myself but somehow the need to reassure them helps me find reassuring ways of thinking. Does that make sense? I talked to my daughters’ schools too and that was helpful.
Have you heard from the Marsden yet? I do hope so.
Lots of love
xx
Hi Daloni
Thank you so much for your lovely message. It was/is so reassuring to hear from people like you and JohnBoy2. I feel I have a huge learning curve ahead of me, you all sound like doctors yourselves you are so knowledgeable about your particular cancers and seem to know your way around the system - I obviously need to get my learning cap on.
Yes, we told the children. The girls I think are in denial. My 19 year old found it very hard saying he didn't want to go back to university etc but the dust is settling now and he is calmer and my youngest is going up and down. But just to kick him in the teeth a bit more his alopecia has returned but hopefully it won't get too bad. He did get some good news yesterday he got a B in further maths - sorry proud mother moment coming out there!
I have read your profile too and am in awe of you what a 3 difficult years you have had.
Finally, yes heard from the Marsden yesterday got an appointment this coming Thursday at 2.30.
Thank you so much xx
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