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
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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…
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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.
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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!!
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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
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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
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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
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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
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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
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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
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Fabulous new Lynn 
xxx
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That’s such great news and how nice of the nurse x
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Great news for you as well! X
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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
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Ps cannot type p o o p as not allowed but can type pooey 
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We did do good 
xxxx fingers crossed we stay healthy xxxx
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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
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