Only found out less than a week ago I’m all over the place.
ive still not got my full diagnosis yet still awaiting test results
it’s like I know I have cancer but don’t know the type I don’t know the answers yet to deal with it like living in limbo waiting waiting for me is the worst part I know there will be worse to come but not knowing is tuff at the moment.
lm lucky to have support from my wife family and friends telling them was hard I did it over Video call I found it easier for me I knew I had control over the situation face to face was to much more stressful with a video call I could end the conversation when it all got to much.
how do you keep things normal how do I keep positive how how how sad angry pissed off feel at a loss
Hi Robert R24 and welcome to the Macmillan Community but so sorry to hear about your ongoing diagnosis.
I was diagnosed in 1999 with a rare incurable type of blood cancer….. at the moment you trust your clinical team to get a plan together and let’s look for that plan to come along soon.
Navigating the cancer journey can be such a stressful and challenging time but getting support from others who are dealing with the ‘exact same' cancer type can help a lot.
This New to Community area is like our reception desk where we look to direct you to the best part of the Community for you to get support.
The Community is actually divided into dedicated Cancer Support Groups (Discussion Rooms)…………so once you have a clear diagnosis you can have a look through THIS LIST you will find all our dedicated cancer support groups listed.
These groups are safe places to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support from members who are navigating the exact same journey.
Have a look through the LIST above and once you find the support group for your cancer type....... click on the link and when 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.
When you are ready……. you can introduce yourself 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.
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/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.
Hi again Robert R24 so if you have been seen by Heamatology they are looking at some form of blood cancer?....... was there any hint as to the type?
As there are a few different types of blood cancer (Lymphoma, Myeloma, Leukaemia and a few Myelodysplasia and Myeloproliferative Neoplasms) it can take time for a clear diagnosis to be put in place.
So it's best that you don't go blindly into our support groups as each blood cancer 'type' can be treated ever so differently...... so for this short period stick to this thread and we can chat until you have a clear diagnosis.
For some context I was diagnosed in 1999 age 44 with one of the rare (8 in a million) hard to treat incurable types of slow growing Low-Grade NHLs - Cutaneous T-Cell (Mycosis Fungodes) Mycosis Fungodes when our daughters were 14 and 18…… I continued to work for 12 years in a demanding teaching job and yes had various treatments over these first 14 years then in late 2013 a second rare (4 in a million) more aggressive fast growing High-Grade NHL - Peripheral T-Cell -NOS (Not Otherwise Specified) NHL came along taking me to stage 4……. but this was all very treatable.
But we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turn 69 in a few weeks and just celebrated 9 years since my last treatment and we continue to look forward to what else life has in store first us to enjoy.
Always around to chat.
Hi Linguist I am sorry to hear about your husband and the challenges you are facing.
My long suffering wife managed to keep working throughout most of my treatment as she could work from home at times.….. but she did have some periods of time off as we had to go down to Glasgow (we are in Inverness) for my treatment…..
So it was a month for the first set of treatment then a year later 7 weeks treatment….. plus lots of 7hr round trip drives for appointments….. we must have done 25 round trips - 6000+ miles.
On reflection, I will always say that the caregiver sitting at the bedside has a more challenging journey….. and there is a balance as there comes a time when you will have to put your own physical and mental wellbeing at the forefront and this may require some time off work.
Talking with people who are navigating the ‘exact’ sane journey is very important.
I see you have joined our Thyroid cancer support group…… but as for the practical and emotional challenges of supporting your husband and indeed yourself and the family you may benefit from joining and posting in our……
……. support group where you will connect with a wide range of members navigating the exact same support challenges.
It is an emotional time supporting family so you might find this Macmillan information your feelings when someone has cancer helpful as well as this link getting help with your emotions.
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/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.
((hugs))
