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Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
A support group for anyone affected by leukaemia to come together, share experiences...
Thought I would just put a post up to see how everyone is getting on.
Whether you are post treatment or going through treatment it is a difficult and worrying time for most of us I am sure.
If anyone has any worries or just wants to say "hello" to break the boredom of isolation please don't be shy!
I am managing to some work from home and I am far enough post transplant that I can get out of the house for my hours walk a day. Thinking about some of the jobs I have been saving up around the house and planning to see what I can get done over the next couple of months.
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New to the group new and to ALL too, diagnosed just two weeks ago and already on day 11 of induction and chemotherapy. Two chemo down and two to go withe a lumbar puncture and spinal fluid chemo to do next week.
So far so good, not saying its a walk in the park but feel a lot better than two weeks ago when I presented at the hospital with haemoglobin of around 40. Having treatment at the western general hospital Edinburgh as an out patient at the moment.
So lots of stuff I am not looking forward to but I don't care it's getting done and getting beat. I will do as I am told even taking those horrible potassium soluble tablets every day if I need to!!!
Anyway glad your through the transplant phase and getting out the house. I feel I get out the house as I am in day ward for two or three times a week at the moment so not so bad.
Welcome to this corner of the forums, although of course sorry the having ALL has brought you here.
Yes it is amazing how A few units of blood can make you feel better. I used to need some when my Haemoglobin used to get to get down to around 8.5 ( they always used the the single digit counts in Barts).
i had forgotten about the potassium tablets until you mentioned them.. I was ok taking the meds although the pill count was massive.
which protocol are you following? I was on UKALL 14 but it may well be different now as that was back in 2012.
The lumber punctures themselves are ok.. uncomfortable as you would expect but not painful and don’t last long. I did struggle with headaches after though.. drank coke and coffee and even tried Desmopressin injections before them. I think I had about 4 in total as I declined to have any more once I had my SCT.
It is good that you are starting treatment as a day patient Rather than being stuck in a room.
Keep the positive outlook and take one day at a time.. any questions please ask.
Thanks for your insights and hopefully if I have any questions I will just reach out to you and the community.
It's still on UKALL14 at the moment but they are tayoribg the drugs to fit my needs based on twice weekly blood tests at the moment.
It's good to hear you are doing well, I only found out my condition just over two weeks ago and still. My head is spinning with all the possible outcomes, I so far I would like to follow your path!!
Cheers for getting back and sorry my reply took days I locked my account.
It was once said to me that ideal path is like a plane travelling down a runway straight in preparation for take off.. however it is likely that you will swerve from side to side along the runway but as long as you are straight at the end that is all that matters!
Feel free to ask any questions and i will do my best to answer them.. When I was init was daily blood tests at 6am each day.. I was so happy when I got a PICC line after about 4 weeks so they could help themselves without waking me up!
Thanks for the support and offer of advice truly greatful.
Yeah had the LP with chemo this week, got the headache so far tablets or a long lie down clears it for me which is good. How long did it tend to last for you I'm three days in from it hope it goes permanently soon.
As for the LP itself the doctor was great she could tell I was very nervous and did everything right. Didn't feel a thing after the local anesthetic. Phew.
As for bloods and PICC I'm only doing them twice a week now. So living. With a PICC at home for five days and not using it seems a lot of effort as the cannula are now going in first time each day im there. But dang I've said it now Monday will be a bad one...
I'm doing this all as out patient now as well so I have masses of time hanging around waiting meds or blood.
I stay happy and smile it's not the nurses fault I can see. They constantly chasing it up and trying to get my samples higher on the list or higher in the pharmy labs. Etc.
Just trying to stay positive all the way through this.
Glad to hear the tablets and a lie down clear your head for you.. Mine went on for a couple of weeks each time and I ended up staying in as it made me feel so rough so fingers crossed you continue to get through them OK.
Yes we used to say as soon as we walked through Barts doors we were onto hospital time which works completely different to anywhere else.
We just used to right the day off and if we got out early it was a bonus.. Taking blood then deciding after a few hours you need some blood.. then realising the cross matching was out of date so that took a while.. finally had your blood and hoped therer was no prescriptions needed!!
My PICC line was in for 8-9 months and I had no problems with it and it made life much easier for meds in and bloods out. I used to go to the local hospital so they could change the dressing if I wasn't due in London which helped.
Hope today goes OK.
Not too good at the moment. Quite low self esteem due to mt decreasing amount of hair, (from cranial radiotherapy and possible the Epilim tablets I take for the epilepsy the radiotherapy gave me). Another down point is that I have had several BCC incised from my head, these also being a result of the radiotherapy, so now i have lots of scars on my head as well as the disappearing hair :(
Sorry to hear you are feeling down at the moment. I can see that you posted in the wigs / hairpieces forum last year and hopefully the answer you got helped try and obtain a new wig.
If that didn't help try calling the helpline on the number below and they may well be able to provide more assistance.
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