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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.
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Pity fest is where I’m at. No reason, just one of those things. Every now and then I need to kick myself up the arse and enjoy today. Unlike you Norberry I need to be allowed to wallow as I’m too bloody minded, someone tell me what’s good for me and I’ll do the opposite. I just need to ensure I don’t let them linger too long. A good walk or some time in the allotment normally helps.
I know other people have bigger issues but our issues are real to us, it’s not a competition.
Telephone consultations are a nuisance, it’s sometimes difficult to hear everything, straining to ensure I don’t mishear you don’t ask questions that arise, I’ve always written questions beforehand to ensure I remember them all.
We do not have voice only, we have telemedicine. Im with you I like seeing my Onc and seeing facial reactions, and Ha I get to look at their house background. Much fun sometimes. Does NHS do any teleconferencing? We use Zoom here but there are many platforms. Curious. See what they do if you ask (insist) on a teleconference. TC is much better than just audio.
Also in TC you can make sure they are paying attention to you and not playing video games....
Cheers and go get them,
Hello MCLkid, thank you for your post, it was informative and made me laugh. I always find it strange that you are so far away yet on the forum it's like you are next door.
I think I wore myself out worrying when I received the text advising of the change but after reading everyone's kind replies I have decided as long as my blood figures are good I dont care!
I am sure I will get another three months so I will insist on a face to face then. Touch wood!
Hope you are doing ok.
I had bloods taken on Tuesday and had a telephone consultation yesterday, I'm still shielding and will be until 31st July.
So Mark phoned (didn't tell me his surname, just that he was a doctor at the cancer unit). Seems to be quite common over here, do they introduce themselves by their first names in GB? Only the consultants use surnames.
Well, my haemaglobin and neutrophils are seemingly healthy, the haemaglobin has not been at that level in 5 years but therein lies a problem. I normally attend the cancer unit every 8 weeks or occasionally a 12 week gap but I have been asked to "attend" in 3 weeks time and not to inject myself before speaking to the doctor again.
Strictly speaking, under the umbrella name of MDS, my blood cancer is refractory anaemia, refractory meaning unmanageable. So with such an increase in haemaglobin level, the doctor is concerned. He stressed that between now and then if I feel shivery, or I'm sweating a lot, I have to first of all ring the emergency number and then get myself up to hospital.
It's going to be an interesting 3 weeks!
At least the weather is a lot cooler, so I won't be drained of energy while I'm working in the garden
After 2 monthly telephone consultations which were really stilted and over in about 5 mins I was given a virtual online consultation with my oncologist. It went really well - clear picture and speech and it was really nice to see a face again. It tickled me that I went to a virtual waiting room first. I was later shown the scan picture and the report by my oncologist and would definitely opt for virtual over telephone every time. The only problem was that my results were not good - my original liver and peritoneal mets were stable but my lung met had increased in size and I had new mets in hip and spine! Having said that I am still glad I was able to see the damage online.
tvman, that sounds a bit scary to me..i hope you will be okay!!!
Now i can join the phone line up here, i always saw my onc in person, and still will. But i now have a Endocrinologist and first consult was on the phone, then blood test and last Friday i had ultrasound and iodine xray for thyroid, and the lady from ultrasound said to me, well it all looks abnormal, she then spoke to doc at nuclearmed..as he does report for both.he said afterwards, pls wait outside for five mins as i have to speak to your doc....so i did...then he comes out and said>>> you can go home now...well thanks. Now i got all that shit in my head, abnormal??? Why , what is it...and now i will have to wait until 16. for a new phone call. Thanks......shi...
tvman Hi, Do you think maybe part of the reason for you going in 3 weeks is because you will almost be at the end of your shielding time by then and it would be good for them to give you the "once over"? They may also want to check that your injections are working, so if you don't take them before you go and they take bloods while you are there, it should let them know if the injections are making a difference or not! Yes, here in Scotland at the hospital's I have been to, the Registrars introduce themselves with their Christian names but normally would tell you their surname too. As you say, the consultants usually get called Mr,Dr or Professor unless you have been under their care for a while and then they will say "call me ? Whatever their Christian name is but you wouldn't do it without their invitation!
Well you are certainly correct about the weather cooling down. One day here we had 28 degs (far too hot for me to function) then the very next day, we had wind, rain, thunder, lightening and 14 degs! Not a day to be doing anything but looking at the garden!
Love Annette x
Nice to hear from you again as always.
What a strange way to speak to you by the lady from ultrasound. If it were me, I'd prefer that she would not make such a comment but ask me to sit outside and just keep her mouth firmly closed regarding what she has seen.
When you see your onc do you still have a long journey to make? I'd guess you would be revisiting the whole scenario a hundred times in your head the whole way home. I think I would! Then I'd be rehearsing what I'd say to my GP when I get home, or perhaps I'd use my car phone if there is a signal. The 16th can't come soon enough for you I think. Come to think about it more, I'd phone today.
I will have my fingers crossed for you the whole time Pet. Take care and stay safe my friend.
tvman, Hi and thanks!!!
When i see my onc doc then i have to drive for 2 mins as she comes here to town twice a week, just all odd things like Endocrinology and Iodine x ray etc i have to drive 1,5 hours...but once in a while that's okay.
I did calm myself down a bit, as my thyroids are playing up for 3 years now, so it cannot be soooo bad as i'm still here lol.
Keep you updated.
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