Hello @petergreenfield How are you doing?
Hi @Lyn99 your experiences sound very similar to mine. It was a few days before I even realised that Myeloma as a cancer and it took me weeks to convince anyone that I didnāt just have a back pain. I had Velcade too and Dexamethasone which as you say gives you 6 sleepy days followed by one bouncing off the walls. Glad your harvest went well.I felt that was worse than the actual transplant aside from feeling sick and diarrhoea,
Good luck with the bloods @Danmar
Hi @Nichola75 , Iāve been quiet for a few days. I now have the line in my next and stem cell collection starts tomorrow. Iām feeling okay but tired .
Hello @Erica My stem cell collection starts tomorrow. August has disappeared very quickly you are right . How are you ?
Good morning @Lyn99 . My stem cell collection starts tomorrow . Hope you are okay
Hi @Mayo57. Itās good to hear from you and get an update.
So itās all go for you now. I can imagine as well as being tired itās quite an anxious time? (Not to make assumptions)
Please keep us updated - when you feel able to and take care.
Sending lots of special wishes X
Hi@Mayo Wishing you well for your stem cell collection. Youāll be grand let us know how you get on. Thinking about you xx
Gosh @Mayo57 so itās all go for your stem cell collection, at last, scary, exciting and every emotion in between I expect.
We will all be thinking of you and when you feel up to it please let us know how you are doing.
Thanks for asking, all is good here, but for an August Bank Holiday it seems a bit chilly out there.
Look after yourself XXX
@Mayo57 Best wishes to you that all goes well. Will be thinking about you. xxx
Thank you @Summertime @Nichola75 @Danmar @Erica and others, I have now had the stems removed. It took two goes to gather the amount they needed . It was relatively straightforward as I have a line in my chest . I was however taken back by the impact on the third day. I felt like I had cement poured into my body . I felt like I was being hammered into the ground. Today, I am feeling a bit better . I am now awaiting the inpatient book in to have the stems reintroduced after chemo .
Hi @Mayo57 thanks for the update especially when you are feeling so battered about, please let us know when you are going back in to have your stems reintroduced.
Really look after yourself.
Great to get an update. Please take care and look after yourself! Thatās an order X
Hi @Mayo57, sorry it took two goes for the stem cell harvest, I was lucky just to have 1 day. Thatās 2 long days so not surprised youāre feeling bashed. Hopefully you will pick up soon. I remember blood levels being pretty low after the harvest so be kind to yourself and donāt overdo it. Xx
Hi @Nichola75 @Summertime @Erica@ - hope I havenāt forgotten anyone my system not working well today and didnt recognise me I have been quiet for a while because a lot has been happening. The Hickman line had to come out ⦠it clotted. Good job I noticed the swelling around my neck. My blood plasma was too low to be booked in straight away for the transplant so I am at home having iron infusion 1x week at hospital and awaiting a new date. I am on blood thinners (which I now administer myself ) and because of the clotting.
Back on dextramathazone and some other bits and pieces⦠I have a degree of peripheral neuropathy in my feet , cold and numb and and on my right bottom lip ā¦. My lippy there keeps disappearing⦠The steroids are making me hungry and i could eat and eat and eat. I cant sleep since being back on the dex - i take 10 tablets on a thurs and Friday and this will be weaned off towards admission. I give myself injectionsā¦. each evening . I hated it but am now quite the expert - just grab some fat and ping!!! Take care for now , I have a check on my bloods on the 11th October and then they will decide whether i am ready to go in and whether there is a bed available. There is some good news, the hospital cancelled the car parking fees for people with a blue badge and my critical illness insurance paid out - so I donāt have to worry about getting back to work . I have a pt job and used to work for myself to make up my money, but on formal sick leave soon.
Hi @Mayo57 good to hear from you but sorry to hear you are having some issues. Will keep everything crossed you get good news soon xx
Oh @Mayo57, it sounds to me as if you are having rather a rough time and you must also be on an emotional rollercoaster.
Thinking of you loads and take special care of yourself.
Please let us know how it goes on the 11th Oct, but it would be lovely to hear from you before then too.
Gosh - you have so much going on and really need to look after yourself. Did chuckle about grabbing the fat for your injections. I remember when I had to do it after an op. I was so grateful to have a bit of fat to grab! X
Hi @Mayo57, I can so relate to your post. My doc told me that the neuropathy can take a year to settle which shocked me a bit. Still having GCSF injections after the stem cell transplant to boost the blood counts so just as well you have some fat to ping, take care and good luck for the transplant, sounds like itās going to be soon xx
Thank you @Lyn99;@erica@ ; @Nichola75 and all those who have replied (I canāt scroll up to see just now).
Yes it has been a rollercoaster but Iām making the right choices and the path ahead is clear . I have a lovely consultant and lead nurses - everyone seems to be enjoying pushing me in the wheelchair ⦠but you can see by my picture Iām fighting back , lippy everyday (I need!!!) and I keep doing my hair . I sing and dance and laugh a lot - always have and myeloma is not going to rob me of my joy.
I attach some photos linked to this period and my joy at having passed my interpersonal mediation course during same . I need to achieve and
maintain my self esteem . I can crash and bawl and howl during the return of my stems and the next period of isolation following the āchemical coshā that is coming. Iām on mild chemo now and thinners and ⦠and ā¦and
I ignore the neuropathy cold/hot cramping feet, but pretty socks and comfy shoes make me feel lovely.
Sometimes I find myself staring out the window with my mouth open ā¦I think like a much older lady ā¦.!!!. I am eating like a pig (steroids)
Take care everyone. I will pop in every now and again but also feel free to ask me anything about my treatment so far. I live in Derbyshire snd between two hospitals
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Great to hear from you! You sound like you have a lovely team which really does make a difference. I wasnāt able to open any of the pics? X