update

[Hilo13]

hi it has been quite a few months since I posted so thought I would get in touch as you have all supported me from the beginning .

in the end I decided not to have the stem cell transplant maybe physically I could have got through it even though would have been hard but mentally I wasn’t in a good place and without that inner resolve it would have been impossible at the time . I am very much a home bird who gets incredibly stressed anxious about being away from my family and home , hospital is an absolute nightmare even without the reasons I am there . I have talked to myself about silly and irrational it is but it doesn’t go away. I would have been in hospital for weeks with very limited access to the family and company . In the scheme of things I decided I would make the most of it and see where this takes me next.

anyway I have just been to a follow-up appointment this week consultant poked and prodded said he couldn’t feel anything we discussed how I was which fingers crossed is mostly ok no infections etc. I do get a few gastronomy issues which I put down to my high anxiety level . So on the whole here I am 12 months later.

I am sending you all my best wishes and wherever you find yourself on this journey I wish you well

Have a good day

Chris x

[NMgal]

Hello Hilo13,I understand how you feel. I do think many times that navigating life with this roller coaster disease is a challenge. I don't blame you at all, I don't think I could do weeks in the hospital either at this point in time. That is a big ask even if you're not feeling unwell.

Recently, a member on this wonderful group mentioned anxiety and hot flashes. I suffer greatly from these hot flashes every day and I'm not really sure why since I have not gotten a true answer. When I read about the anxiety and hot flashes being related something clicked in me. Suffering from anxiety or nerves as my mom used to say has been a lifelong struggle.

Hang in there! As you know, this is a fantastic place for reassurance, up to date information and support from people who are going through the same thing as you. What a gift. Wishing you all the best on your journey,

Lorna❤️

[Spark_Plug]

I'm glad you know you. So many times we chase what we think we should chase ignoring the fact that we could be hurting ourselves and wasting the quality of our semi-unhealthy state for prolonged battles that we'll regret.

I often set that to tumbling in my mind at certain times when I think of the added stresses my family will be in for; will I have the strength to tell them no for their own good. . . - cherish everyday we don't have to choose. Don't hang out in the laundry room of life.

[NMgal in reply to Spark_Plug]

Good advice Spark_PlugI remind myself and make a mental list of the good stuff. There's alot to be grateful and happy about.

[Jm954 Administrator]

Great to hear that you are well! 🎉👏🙏

[CycleWonder]

Chris - It is very nice to hear that you are holding your own. I would also not want to be in the hospital separated from my family and my cat Spooky.

[Thursday45]

You made the decision that was right for you, so well done for that and good wishes for whatever happens next.

[Floxxy]

I hope that things get better for you and that all stabalises. x

[BigDee]

Hello Hilo13

Don't blame you for not wanting to hospital. Last time I went the hospital, I was on the cancer/heart floor and stuck with cardio diet. The food was terrible. 😁

[Cazbolac]

Hello. I am a primary MF sufferer aged 60, 10 years into the condition. I had to stop Rux medication as it was not controlling things. I have enlarged spleen again and my white cells are high. Told I am now in the High risk group. I was offered possible stem cell 4 years ago during all the covid problems. I declined. However they have asked me to consider it again.Your message helped me, thank you. I totally relate to how you feel. I am scared about being away from my husband (who is my rock) and family for so long. I am scared about whole process so I will talk to the transplant team but I may take my chances and get on with life until it all goes wrong.

I think you made a brave decision as you have to do what is right for you. I only hope I can do the same. Just such a difficult thing to decide.

I wish you all the best for the future.

[NMgal in reply to Cazbolac]

Hi Cazbolac,I know what a tough balance it can be, taking care of ourselves and those around us. I like to keep in mind that if I don't have any gas in my tank or energy or good health I don't have a lot to give to those around me.

Best of luck

[DoriZett]

Wishing you all the best Hilo13.🌺

[Danie50]

awesome news keep saying busy and taking care of yourself!

[CLLBGone]

Good news; I applaud your resolve at navigating your own ship