Hi Erica, it’s Gary Bees here. I haven’t got a date yet for my stem cell transplant but I wonder have other people had the same worries I’m having. Thinking the worst, I may die, etc. I’m aware of the risks. Graft v host, infection. Is it human nature would you say to think like this. I’m a positive person normally but I suppose it’s the unknown and no guarantees. I would like any feedback and I’m really glad I joined this forum. Thanks so much to everyone xx
Hi @Bees I am so glad that you have joined our forum, too.
You have also navigated the forum so well.
As I am sure others will agree your fears and thoughts are so, so natural, the medical unknown is so scary and the waiting makes it so much worse.
What I would say is to stick to reliable websites like Blood Cancer UK, they have a support line if you would like to talk to someone and I have found this forum so supportive.
I can just be me and say it how it is for me. Sometimes this can be inappropriate with family and friends. I don’t want to be ‘fixed’ or my feelings taken away. Sometimes just to know I am not the only one is so wonderful.
Please keep posting as I would like to know more about you.
Look after yourself, I think it is so important.
The endless round of medical appointments does get a bit wearying even before any side effects. I hope you’re all keeping well. I think it’s the time of year when they send my head back to the menders to be serviced. I turned up for my four weekly treatment on Thursday, having not looked at my appointment card. The appointment was actually for 2.30 and I’d turned up at 9 as my last few were at that time… fortunately they decided it would actually be more in their interests to treat me then rather than make me come back later, so I got away with it…
Hi @Franko yes, endless medical appointments are very wearing and I have to keep on checking the times too.
Mine are for an op on my head so I quite fancy (and look rather like) doing a Worsel Gummidge and to send my head away till the wound stops bleeding and starts to heal.
I am so glad that your medical team used common sense and treated you early.
Look after yourself and be kind to yourself.
Hi @Franko, don’t worry, I think we all need a social secretary each for all the appointments. Just to say you’re not alone, the lady in front of me had the wrong week let alone the wrong time!!
At hosp again today for bloods etc, I noticed my left arm was a bit swollen and mentioned to dr, they scanned me and I have a blood clot along my Hickman line😏
They said I need to inject blood thinner daily🥺.
They might take Hickman out- hope so really.
I used to inject gsf so I guess it will be similar
Dr said they will need to see me prob 3 times per week
Deep. Joy, when will this nightmare end
Xxx
It must be so exhausting going backwards and forwards for appointments. Hope you give yourself a nice treat after every one! So hoping your nightmare ends soon X
Oh @Summertime I’m so distressed for you. Sending huge hugs xxxxxx
Oh @Summertime, thank goodness you noticed your swollen arm and mentioned it today.
I find medical appointments so exhausting, look after yourself and please let us know how you get on and how you are. xx
Had flu jab today, nurse gave it to me in car park of practice so I didn’t have to go inside. Have second Covid jab booked for 17/12.
Other excellent news is results of day 100 bone marrow aspiration show 100% chimerism- I fully have brother’s blood and T cells. Xx
That’s great news Chris😀
DO you feel a little safer.?
I’m waiting for them to suggest a biopsy😫.hate them I find them so painful make me cry🥲but it be good to know what’s going on inside.
My levels are all good but that’s only half the story I think
How is you Hickman scar now? Did you have to have stitches?
How do they access you for bloods etc now?
hope to see you fri xxx
Hi @ChrisCKW brilliant news on the bone marrow.
I had my results yesterday and there is no myeloma in my marrow which is pretty brilliant. It gives me the best chance of a long remission and they have my spare cells for the future which is comforting. I think we did good!!! Xxx
Fabulous new Lynn xxx
That’s such great news and how nice of the nurse x
Great news for you as well! X
Hi @Summertime ive had 2 bone marrow aspirations since transplant and both were far less painful at Addenbrookes than the previous ones.
The Hinkman line was pooey - really unusual! So I’m sure yours will be fine - had to have steri strip stitches - changed weekly, but most people don’t have a problem xxx I still have some steri strip stitches on but most people are fine in a week.
Bloods old fashioned way - from vein in arm; and yep they still take about 7 phials; but once the little tube is in it’s all seamless.
My appointment is 9:45 but I’ll be there about 8:15 for bloods. Maybe see you there?
How is your Hinkman line now? And your Graft-versus-host-disease? Xxx
Ps cannot type p o o p as not allowed but can type pooey
We did do good xxxx fingers crossed we stay healthy xxxx
Wow, @ChrisCKW good news having your flu jab and your second Covid jab booked.
It must be excellent news with your bone marrow aspiration result, but also a weird feeling xx
Wow @Lyn99 good news for you too, yes, you did good !!!