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For people living with incurable cancer only
This group is aimed only at people who have had an incurable diagnosis themselves, as we have had feedback that they would like a safe space to share their feelings openly among themselves.
If you have a loved one with incurable cancer, you are very welcome on the Online Community as a whole, but we would ask that you respect the wishes of people with incurable cancer and not post in this particular group. Instead, you will find really good support in the Carers group, the relevant cancer type group and the supporting someone with incurable cancer group.
I feel so lonely, although I am surrounded by family and friends who love me. The lonliness comes from having this hideous disease and knowing that my future is very limited. I cannot see a future and feel that I won't see life after Coronavirus. Don't know how to haul myself out of this. I put on a brave face most of the time with my family and friends, but to be honest some days I can hardly face getting out of bed.
Hi Debs0768, I’m sorry your feeling lonely, and you haven’t used the words but I read that your feeling down at the moment. I think you’re on the same immunotherapy as me Keytruda/Pembrolizumab and are probably still shielding at the moment. When this all started I knew shielding and not getting out was going to be a challenge and when an opportunity to enroll on a virtual mindfulness course I took it to be an extra focus for me, an extra resource in my emotional tool box when things are feeling uncertain.
I have also felt that I won’t see life after coronavirus, the strongest time for me feeling that was at the start when I was given the choice to continue with treatment or have a break until July. It took a bit of time to work through my feelings about the virus altering my way of coping with things.
Is there anything that’s happened to bring this to a head for you now? Anything that’s rocking your normal way of coping?
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Nothing specific has changed apart from finding out my tumour has grown and the chemo wasn't working. It just feels like every day is the same, waiting for treatment, scans, results. I have been recommended mindfulness/meditation but yet to try it. I just cannot shake off the reality that my life will be over in probabaly less than 5 years, and so much I still want to do and see. I am scared of the illlness getting worse and me becoming less able and more poorly.
My MacMillan nurse is great and she tells me to not look too far ahead and to just focus on the next treatment, scan, etc., and sometimes I can do that. But I tend to dread that the news will always be bad.
Thank you xx
Hi there God I know how you feel having the shielding to cope with as well as having cancer to deal with adds to all the pressure and anxious issues that come with it for me i live in my own no family only one best friend who is a one in a million a very special person I have good days and bad days I just try not to think of the future and take each day as it comes as I tend to panic more if I think too far ahead this might help you too you have to somehow find an inner strength and fight as hard as you can which I know is extremely hard to do when you get so low this has worried me on the virus can't wait to do my own shopping go to a garden centre as at the moment I am able to get about my fear has been I might not be able to get out and about after the shielding so I know where you are coming from on this site you are always listened to and they will always get back to you with help and support so you are not alone it's been a life saver for me on many occasions so keep fighting on everyone is always here for you day or night have a big hug from me xx
Hello Debs0768. Just a quick post to say I feel alot like you do. I am sorry that you are suffering and I hope you start to feel better. You will do, it is impossible to worry forever. Best wishes.
I remember feeling so isolated and although I could talk to family and friends I needed to be able to talk to people who were were not so invested in me. I didn't want to let my family down by being vulnerable but neither did I want to lie to them and pretend that everything was going OK. I tried to find a local cancer support group but I live in a rural area so no joy there. I hadn't thought of talking to a Macmillan nurse but did eventually find my way to this community which helped me enormously. Surprising really as I am not on any other social media platforms. I tried face book once and lasted about 6 weeks before I deleted my account.
Coronavirus puts a whole new level of difficulty in place as it was easier for me to start to arrange things that I could enjoy and have things to look forward to. It did take me quite a while to realise that I still had a future, not necessarily the same one that I had been expecting but it was still there waiting for me when I could get around to participating in it. I also turns out that it has lasted longer than I initially thought it was going to be as it turns out that I am now incurable not terminal.
It takes a while but for most people things do start to change. Hopefully we will be able to get out and about a bit more soon and it gets a bit easier to be a bit more positive. In the meantime we are still here if you need us.
Wishing you all the best,
Hi Debs0768, me again. I always have a grumpy time when there’s been in blip in my treatment. My last 3 CT scans have been like that, although my MRI last week brought good news. I sometimes have to hit a low in grumpiness before I decide I’ve had enough and need to do something to make life not grumpy. I think I’m hearing that your nearly at that stage, as you mentioned that sometimes you can hardly face getting out of bed, and you don’t know how to haul yourself out of this, and yet you mention your Macmillan nurse and mindfulness but perhaps weren’t yet ready, sometimes we or maybe I should say I, I sometimes like to wallow, and then when I’m fed up of that I have to do something. Sometimes I get to anticipate when things are going to be tough and do something to miss out the wallowing stage.
Prior to lockdown that might have been planning something nice to not remember a day just for a scan or results day. Not so easy right now. But Popgate says about looking forward to shopping and we have a date for lockdown ending 1/8 or possibly ending as I’m not so convinced. But is it as black and white that we can’t enjoy ourselves during lockdown or when we have bad news, Norberry mentions its impossible to worry forever. I think we get tired of being in a strop, but sometimes need some help getting out.
Music helps me either singing or dancing in the kitchen while I wash up, or iron. At one stage music used to help me cry, or find out what emotion I was feeling.
My mindfulness course during lockdown, made us think about what resources we had around us, radio, tv, hammock, garden, baking, colouring books, novels, internet games, guitar, piano ? resources for bringing joy into our lives. They encouraged us to do something new or different each day, to find out if that could be a new enjoyment. For some it was just to get out of an old routine that wasn’t working for them, to open the door for new experiences, or rekindle old loves. To think of things we were grateful for, and to spend some time mindfully thinking about now and not 5 years ahead, or 1 year.
Im sure your Macmillan nurse would have suggestions of counselling, or HOPE courses or taster courses, or mindfulness sessions, or the Macmillan buddy scheme. Your friends here or near home might have some suggestions to help.
Nearly finished my long post. I found when my friends who were not shielding (or those who should have been) I felt a bit of loneliness that they were moving on, but most good friends will respond when help is asked for. On 6/7 we are to be able to meet more people, and may want to plan things or plan virtual things still, some fun. Sometimes I want others to take the lead but sometimes we just have to do that ourselves.
I had never listened to a podcast, I hadn’t done any mindfulness or visualisation, never sat in a hammock. What might bring some joy back for you?
P.S. I actually should ask these fun loving incorrigibles what brings joy to them.
Thank you, it helps so much to hear from others in a similar situation
Take care xx
Debs0768 That’s the beauty of this forum, we’re all still in the same boat unfortunately. I don’t know how long I’ve got, I know I’m probably as healthy as I’m ever going to be. Pain is minimal yet it’s taken me months to buy a car I wanted because I didn’t want to make any long term commitments.
some days are better than others, some days My mortality is real and present, other days I’m able to live for today. Initially I couldn’t even take out a mobile phone contract.
What hits me is if I think too far ahead, when my eldest (she has additional needs) is having a tough time. Sometimes this forum is a blessing other times I need to take a break, spend sometime away from cancer. Although not a day goes by without it being on mind. I suppose what I’m trying clumsy to say is do what’s right for you. Sometimes something is beneficial other times unhelpful.
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