My story is summarised in my bio, not sure what to say here, just wanted to talk to people who might understand I think. Big test results tomorrow to find out if I have even less than the current average 2-3 years of people in my situation have. Can’t sleep. Have moved quickly from a positive bowel cancer tumour removal. waiting for a stoma reversal. to inoperable lung and liver cancers that need managing rather than curing. Haven’t told anyone yet, got a 15 year old about to start GCSEs in three weeks, need to spare him the pain until they are over. I have only known a week, I have no symptoms, I have never felt so sad and helpless.
It is tough to accept you are a passenger in this cancer journey, you get limited info drip fed to you, and you have no control over what happens next. Just a month ago it all looked really positive for me, and 5 years monitoring was all I had to worry about. Now the picture is very different and the last week has been the hardest thing I have ever had to get through.
I have lots of people asking me how I am and what the latest update is, I am palming them all off until I tell the children, not sure how I will do that, I am lucky I have an amazingly supportive wife, who is always optimistic, but has so far always been wrong too and it hurts her so much each time.
Anyway, for those just starting out on the journey, don’t compare yourself to others, don’t google stuff, don’t predict what’s next, just take each step at a time and follow the advice you are given, if I had have known everything I would have had to go through at the start I couldn’t have coped, but just taking each stage and getting through it you will be surprised what you are capable of.
Good Luck everybody!
Hi KHR75 and a very warm welcome to the Macmillan Community but sorry to hear about your journey so far.
I know from experience having been on my cancer journey now coming up to 26 years with two very rare, hard to treat types of Non Hodgkin’s Lymphomas (one incurable) that navigating this journey can be such a stressful and challenging time but talking with and getting support from people who have walked or are walking the ‘exact same' journey can help a lot.
Back in 1999 (when I was 44) the median survival for my first type of Lymphoma was set at 3-5 years on the information I was given…… but I have been very fortunate that various treatment developments have came along just in time.
The Community is actually divided into dedicated Cancer Specific Groups (Discussion Rooms) but we also have a dedicated group called….
Living with incurable cancer - incurable patients only
This group is a safe place to talk to others with a similar diagnosis, to ask questions and get support.
To connect in with the group please click on the link above……. then once the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.
You can then introduce yourself to the group by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
As always the Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits and financial guidance or just a listening ear.
Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Do get back to me if you need further help navigating the community…… but all the very best.
