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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.
Hello I joined this group about 3 years ago I was in touch with smashing lady, Lady Peeps and a very few others, however, I have come to the group to read posts, very frequently and have at that time been ridiculed for my lack of remembrance in some things Due to Chemo and illness,, I must admit this was by a gentleman and I use the phrase loosely, Anyway no matter to me I am trying to make contact with like suffering people once again... I really hope I have not offended anyone, it is just certain drugs which I think you all know about affects memory and diction, I would really like to make some friends as precious as Lady Peepy's I have no idea what has happened to her could someone possibly let me know thank you for listening.
Lost and Alone.
Hi Lost and Alone
Welcome to the group again, I think I remember you from 3 years ago. I certainly remember Lady Pepys, she was a real friend to me and when the site was giving problems and she wasn't able to post, she asked me to post a message on the site from her that she really needed posting. She was having severe headaches and her mobility was deteriorating which was alarming her. Although she and I were pming frequently, as her condition deteriorated she texted less and less until I heard no more.
Annette and Daloni will remember her too, boy was she a character, she found herself in some very comical situations and relayed them with style. I'm so sorry to hear that you were ridiculed by someone, that's a very unusual and probably unique experience for someone on the site to have. I can say for sure that that never happened before to me. I have welcomed many people to the site, explaining to them that they will find reassurance and support in abundance.
Lost and alone, I too have a memory problem. Names are hard to recall, but more infuriatingly I can't remember words for everyday objects and when in a conversation with anyone, I have to apologise to people when I am delving deep into a seemingly rapidly emptying noun box. It's really embarrassing but perhaps easier these days because I am shielding and I have a limited number of people with whom to converse.. I'm ok here because I have time to think and search for synonyms.
So Lost and alone, I share your worries. I had a telephone consultation with my GP yesterday, advised to do so by my doctor who phoned me from the cancer unit. I think it was him, I can't be sure. I'm experiencing hallucinations, usually when I am awakened by my wife from a short doze, one of dozens daily. I mentioned that someone from mental health had phoned me concerning my memory problem but she hadn't yet received a report. She asked me how it went, and I had to tell her that I couldn't remember much, if anything and we both chuckled.
I look forward to chatting with you Lost and Alone.
Take care and stay safe x
Hi Lost and Alone
welcome back to the community. I am so sorry to hear you were ridiculed. It’s not something I’ve seen in my time as a member of this group. We are normally a very supportive bunch and plenty of us have memory problems. My own brain is riddled after years of chemo and other treatments.
I do remember Lady Pepys, though. She really was a character and a good friend to so many people here. She lived alone and as her mobility declined, she got into some right scrapes trying to get on with her life. Her tales of gardening her pots on a bottom shuffle were hilarious - or rather the way she told them was hilarious. She was a regular poster here but quite suddenly she disappeared from the site and I can only wonder what happened to her and light a candle.
I do hope you’ll stick around this time and get to know us. I’ve got plenty of friends here who are in invaluable to me. I don’t know how I’d manage without them
What is a community champ?
Dear Lost and Alone
I am sorry you had a bad experience, hopefully we can make it better for you. My memory is awful for some things yet I can recall tiny details of other things.
Are you shielding? It's been a difficult time, I think we all deserve a jolly good holiday.
Take care, I hope you feel better about the forum
TVman hello and thank you for replying to my somewhat scared/rude post I can see the chaps face but I don't recall his name, anyway "Lady Pepys" yes and she certainly was a Lady in every sense of the word. I do remember you sir! yes always pleasant and kind to everyone, Dylon I have read many messages from that person always good and encouraging, everyone was so nice I just didn't have the courage after that person was, well not rude to me but sort of made a joke of my posts... It really doesn't matter now, I am just happy that I have taken courage in both hands and started from first base. thanks again for your reply and look forward to speaking again... (thank you I am greatful.)
Hello Dylon gosh I remember you so much, yes you were the one who was on hand for everybody, yes and I know you were close to "Ladt Pepys" she was a lady I certainly respected and admired. so so sad I had to miss her last few posts, but hospitals will not wait will they, we had many pleasant hrs talking about my little dog and his antics, but everything good must come to an end I suppose... Thank you so much for responding to my post, it took some courage to start to converse again I can tell you,!!!
But all good I have done it now and also had a smashing response thanks again Dylon and hope to spk again soon.
Hello Flowerlady, thank you for replying to my post and a smashing response it is. Yes I am shielding I am afraid been in lockdown now since 13th March, but yesterday got my mask's and my onco said that I may be able to venture outside about Aug 1st (MayB B4) but doubtful apparently immune system is pretty much shot so have to stay indoors. where shall we go Flowerlady ? I was thinking about the Py-jarmers that is about as far as I will get I think. It is so nice to spk with you hope to spk again soon, stay well and thank you once again for your post it really did cheer me up I appreciate it so much all my best wishes.
Lost and Alone.,
Lost and Alone Hi, Of course I remember you! I've been taking a small break from the Group recently but when I saw your post, I just had to reply! I am so sorry you had a bad experience and as others have said, it is most unusual in this caring Group! I'm glad you took the hull by the horns and gave it another go and in future hope you will be neither Lost nor Alone! We are here for you!
Love Annette x
You sound much better, I am so glad you had the courage to revisit the forum!!
Let's hope we can get out and about soon and your immune system strengthens.
Yes Flowerlady it has given me back a lot of confidence, but I am still trying to navigate myself around the site, but I must say what smashing people I have met this time thank you all for my superb welcome now I don't feel as silly even if I am, I feel accepted thank you..xx
Lost and Alone. xxx
Hello lost and alone
I am still fairly new and still a little shy but join in from time to time. Each and every time I post, whether a grumble or a question I get the most supportive responses.
Hello Tracy, yes it is a bit daunting isn;t it? but still now we have taken the plunge and I feel I have been well received it is quite fun, I don't mean fun in the way of anyone suffering but nice to meet new people, hope we spk again.
All my best wishes
Lost and Alone
Hi everyone on this amazing community of brave soldiers fighting the unwinnable, atleast with the Cancer we are talking.
My name is Rafs and have just joined this morning. I could not possibly match to the level of what each one of us is suffering with, both physically and emotionally. It is tough it's very difficult and let nobody be in any doubt about it. It's horrible and unforgiving. It's torturous. The thoughts of no hope, of dying, feeling alone in a world that doesn't get you properly or that you can't "say the things as they are". For this community, we can express it for how it is.
I would like to talk to all those, feeling horrible feeling alone and don't see or feel life has anything worthwhile for them. Those fighting with unbelievable inner strength only to have their meager hopes shattered with the morbid prognosis that the Dr is obliged to put a number to. They will set for you a number of months etc they believe you have left. It's based primarily on statistics. Average means half fare better, many will live longer or even a lot longer. So keep fighting don't believe you are only going to live according to the Dr's prognosis. Cancer is often beaten with an inner determination that fights it. You can live longer. Keep up the positivity.
For sure this sadly won't be the case for everyone and my heart and mind go out to you.
My story is one that I know may not chime with everyone. I was diagnosed with GBM grade4, in August 2011. I was 'given' 9-12 months to live. I was told chemo may not be worth trying but did offer to operate to debulk as much as possible. I had surgery at Salford Royal hospital after which my surgeon said she had managed to remove about 80% of the tumour, much more than the 50% she had hoped for. The plan now was for radio and chemo.
At the time, my wife was 9 months pregnant with our first child. Baby boy was born 10 days post surgery. A week later I started 6 weeks of radiotherapy, 30 sessions concurrent with temozolomide which I'm sure a lot of you are familiar with. Nobody will truthfully say that it is a simple procedure. All ones worries and emotions, all bottled within to 'protect' your loved ones, for me my wife soon after giving birth, a time of hope and looking forward to the future, it was extremely difficult to contend with but would not allow those inner thoughts to get in the conversations, I wanted to protect her and our baby boy, Zvi. He'll be turning 9 soon. All the nausea and weakness trying to get out of bed and get dressed to go to Radio session again. I live in a lovely community amongst selfless amazing people, so many willing and waiting to help in whichever way possible. After completing radiotherapy, I was to have temozolomide chemo every 4 weeks for 5 days. My oncology told me the protocol was to give 9 courses of the temo. Against all prediction, the radio had stopped the tumour from growing more. But the chemo hadn't had any impact on reducing the tumour. After I had 8th cycle and with no improvement, without which the tumour would regrow fast, we discussed with oncologist exploring any other possible options there may be to help reduce the tumour.
For at this point, I was doing very well, we were a year from diagnosis and my fight was getting more emboldened. Oncologist and we were both to research to try and find out if there is an alternative as my next temozolomide will be my last round and it didn't seem to be working. We found nothing else. We had sent the scan pictures and medical reports to top specialists in the US and Europe. They all told us that temozolomide is the best and only option. I had my ninth (and final) round. I then had an MRI scan, as I had after each 3 rounds. In complete emotional shock, the scan showed a tiny reduction! So because of this I was allowed and it was arranged that I'll have more rounds of chemo as it would be considered a trial which the NHS are happy to fund as temozolomide was relatively new to the NHS. I was then to have 5 more courses, in total 14 rounds of temo. It was then decided it was asleep. Of course we know that gbm doesn't go away completely and it is always lurking to get back at us. My story may well be extraordinary but I'm telling it to you that you have a chance for if one drug hasn't helped, now there are many more advancements in treating cancer, give each option a try. I feel wrong to say this as it is a flawed statement, keep fighting be positive.
I've, like all of you have given up on life when things seem hopeless and the treatment brutal. It's unimaginably stressful and upsetting especially when we think of all those so very dear, our spouse, parents and children.
Everyone needs a listening understanding someone, who has "suffering equivalents" who can comprehend the incomprehensible suffering and trauma we go through daily.
Many thanks for allowing me into your community,
Best wishes, wishing everyone the very best and I feel intensely for each and every one of you.
Hi there and a very warm welcome to the group a very informative post you have given I totally agree with you that sometimes it works out that you are going to be around longer than you were given as you have been from 2011that is amazing that you have kept on fighting the battle for so long I take my hat of to you I myself was only given 3 months to live last April and I am still here fighting on my consultant calls me a miracle and always says to me everyone is an individual with the time we have left like you say new treatments are being invented all the time there is always hope and I will try any new drug to keep me going as long as I can this group is fantastic for advice and support you always get a response day or night so keep on posting best wishes
Hi thank you very much for your warm welcome and your very kind message. I'm greatly inspired by your story at the same time my heart goes out to you, it must have been traumatic with your diagnosis and horrible prognosis which only serves to weaken your resolve, but clearly you've shown your amazing credentials, your upward struggle and resolve. I'm impressed also with how your Oncologist summed up the flaw in estimating an end date. What your Oncologist said must have helped somewhat, perhaps only little, to fight for your goals and life itself. I'm so glad you are breaking down barriers but at the same time life can't have the same quality as before. Emotions are pulled up and down depending on the day, your own thoughts and by what you hear from others.
Wishing you, and every one of our community here the best of heartfelt wishes, for a longer life ahead, being saved and survived by any available, always new ways to treat cancer.
On the note of health care. I have researched extensively for different options and treatments, in the US and Europe. Let me make this clear, TODAY'S THE 72ND BIRTHDAY OF OUR TREASURED NHS, they are the very best in the world, they do their work with distinction and pure patient focused. The Doctors are world class but they don't allow their high status to show with their amazing care, time and expertise. I'm under many specialists across 3 different hospitals in Manchester and I can feel nothing but gratefulness and awe at the services they provide, treating each patient as though they are their only patient when actually they are running off their feet. Dedication. Selflessness. Extraordinary.
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