So Lonely

Hello James,

I'm so sorry that you are experiencing this. I'm not really in a position to give lots of advice as my situation is different from yours in many ways. I have terminal cancer, likely with less than 12 months to live, but I'm single and child-free so I don't have to worry about providing for anyone. I understand what it's like to be a strong, independent person, who is used to solving their own problems and helping out others rather than asking for support. I have been lucky enough to receive amazing support from the small number of friends that I made after moving to new city about a year before my diagnosis. I had to call one of them to bring me some stuff when I ended up in hospital unexpectedly and they all just swang into action from there.

I have also received great support from my local cancer charity, particularly weekly counselling, which I find invaluable. I don't like to burden my friends with all my negative thoughts and tears, but the counsellor is paid (by the charity) to take those things, and I always come out feeling a bit lighter. I think that Macmillan have a support line which you can call for counselling, and they may know of some face-to-face options local to you if prefer that.

It sounds as if your family is in denial about the severity of your condition. I'm sure it's not that they don't care, just that they are struggling to accept it. You probably need to find a time to sit down with your wife and talk it through with her. Macmillan and local cancer charities also provide support for families of cancer patients, so your wife may find that helpful. Personally I would find it useful to talk to a counsellor before talking to my partner. I have found it particularly difficult to deal with my mum because she is such a negative person and a drama queen, and I've also worried about what to tell my sister because she's experiencing a lot of stress at work right now. Talking things through with the couselllor has helped me find approaches which work for me.

I think basically we need to accept that however strong and independent we were in the past, we are facing a really tough situation right now and we deserve all the support we can get, so we should not be afraid to ask for it.

There is another group on here, called Living with Incurable Cancer Forum, with a lot of very active members, so you may want to have a look at that too.

Really wishing you the best and hoping that you get the support you need and deserve.

Sarah xx

Hi James,

I can only echo what AisB has said - seek out some support from Macmillan  or whoever can help. Talking it through with a strnager can really help you get a grip of what you think, feel, need. Sounds to me like your family are in total denial and unable to accept realities. It must be extremely hard to have to carry on doing such a physical job while feeling more physically vulnerable. McMillan have advisors who can help you work out practical financial aspects - like cashing in insurnce and pensions in the light of an incurable diagnosis. Please also join us on the Incurables forum - we are an active and supportive group and we all know what it is like to be given a limited outook.

All the best

Hi James, sorry to hear your situation. After reading AisBs comment I would perhaps suggest that if you can't get through to the family, then you might have to start acting 'selfish'  from their point of view, and look after yourself first. Perhaps a counselor would help as well. Whatever you decide, I think you might have to think about accepting a part time job to prolong your life/reduce stress. Big hugs anyhow. 

Thank you Sarah. I will join incurable cancer group. 

Thank you all. I will request that I can join the living with incurable cancer group. Unfortunately, finances are an issue. Hence I continue to work (self employed) I do get PIP but that is about it at the moment. I will also consider counselling. Thank you all for you advise and support. Be blessed

James my brother hasn’t phoned me since my diagnosis of cancer.
He is five years older than me.
My wife had cancer and I had to do 13 trips to Coventry a journey of 80 miles there and back each time.
She was discharged and that’s great but her sister and my brother just ignored our requests for help with doing some of the driving.
Then I had 5 weeks every day for Chemo and Radiology treatment and we were on our own again.
My wife came with me every day for those five weeks of treatment.
Both consultants were very good in accommodating our various treatment schedules.
So same sort of situation James.
All the best.

Chromeplated.

Hi James and good to see you have received some great support.

You may want to look into our  Telephone Buddy Service where you can be matched with someone who understands what you're going through, and they'll give you a weekly call.

Do also call the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via Webchat and Email too. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. You may also find our Ask an Expert section helpful but do allow a few working days for a reply.

Hi,

Sorry to hear your in a similar position. Its really difficult at times. I only have chemo every two weeks but I do have a pump for two days. Having chemo and radiology must be really difficult. Do you have any coping strategies you would be willing to share? Thank you for sharing your situation. 

Be blessed

James

Hi,

Thank you for this information I would be interested in the buddy service. Having someone to share with who understands would prove very supportive. Thank you

James I enjoy making short videos.
They are all about Pembrokeshire though.
I posted a video on this site and was silly enough to miss the fact it linked to my Youtube channel and details about me such as full name etc that broke site guidelines. Admin were very nice about it and told me they had to remove it for my own security. I have been told that I can upload the pictures if I like. Unfortunately due to the fact I cannot leave the house for more than a couple of hours due to my needing toilets constantly the videos are basically pictures instead of actual video footage. They do have appropriate music attached to them and move slightly etc. That's basically how I am coping with the situation but I must admit I spend hours online looking at videos about Pembrokeshire however. The replies we get from people very close to us are difficult for them. My wife bless her would say the same thing as, I am sorry. Upon reflection when I feel I am not getting enough sympathetic replies to anything I say I ask myself what would I say with rolls reversed. My wife had a massive stroke about 12 years ago and it required extensive surgery to save her life. I became her career and still do most things now like cooking and the vast majority of the house work etc. So how do I cope? Well so far so good but on the 8th of March when I have a hospital appointment things might change and I wonder if I can continue as I am now with just living life the best I can. Take care James, we are not alone with the very large burden we have to cope with.

Chromeplated.