Still Struggling

I can go in when ever I want, there’s classes like creating writing. I tend to pop in if I have to go to the hospital. But time I come out the clinic, sometimes it’s too late.

I remembered something from my SCT meeting. In October 2020 I went into hospital with a popped ulcer. I was in hospital for almost 3 weeks, 5 days on critical care. Up until then I not been in hospital since I was 13. He seemed a little concerned by this, obviously it’s on my records. Don’t know if this makes me a higher risk ?

Oh thats not great. But I wouldnt have thought it would be directly relevant to this?

I don’t know, not sure if he mentioned it put me more at risk of sepsis ? not heard anything over the last two days. I got to go back to hospital tomorrow to have Hickman line dressing changed. He did mention he would have a word with the Myeloma team. Been thinking of mum a lot today, bit emotional!

Having blood cancer puts you at risk of infections and sepsis as it affects your red and white cells and myeloma is to do with your platelets. The treatment you are on to kill off your bone marrow ready for the stem cell transplant also puts you at risk of infection. Having a burst ulcer causes sepsis as it causes a hole in the stomach that allows bacteria and stomach acid to get into your abdomen. So the sepsis was part of that so I can’t see how that is related to your now.

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No don’t know myself, just spoke to the Myeloma nurses. Got a new appointment to see my doctor next Wednesday. Due back in later today, Hickman dressing

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All the best for the week ahead, Keith

Thank You Mag, I had a chat in WhatsApp last night, with a friend I made through the Myeloma forums last night. Similar ages and a Bowie fan, can’t fault him there. He’s been in remission for 18 months without having a Stem Cell Transplant. Some thinking to do before I see my doctor on Wednesday. No decision made as of yet, but I have to make a life decision on Wednesday either that or take more time. I’m in no rush!

Good luck with your decision making. It probably makes sense to have the treatment, but it is your choice as to what is best for you. I hope you make the right choice for you.

Obviously I need to explore my options and the results from those options. I’m in no rush as my count is low at the moment. Make a decision based on less risk of death or serious risk to life.

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Hope you had a useful meeting with your doctor and feel more informed to make some decisions now. How are you?

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Hi Mag still getting a little stiffness in back. yes consultation went a lot better yesterday. I do have a real nice doctor and she was very understanding why I didn’t consent straight away for the SCT. My doctor has given me a little bit more time to make a decision. I’m due to start another cycle of chemo in the meantime. My Myeloma count is now down to - 1 which is very good news.

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@Keith68 pleased to hear you’ve had some positive news, keep your chin up :blush:

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Thats really good. Glad youve got some time and support yo make the right decision. Hoping you feel more optimistic about things now.

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Glad you have more time to make a decision, it’s hard I know but you have the support there by the sounds of it to make the right choice

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Hello, thank you for sharing and I’m sorry for your loss

I’m an only child and my mum died in July. My Dad is alive but hasn’t ever been an active part in my life. It was always me and Mum, and now it’s well, just me.

I think this time of year highlights it, when other people talk about their families x

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Sorry for your loss. It feels so hard to be without your loved one I know xx

I do I have a lovely doctor, I can’t ask for more. Just that meeting wasn’t with her, I told her I wish it had been. Because dealing and living with Myeloma is a team effort. It’s too big to go it alone. It makes you think about life and the people in this world.

Hate to say this but you not really alone you know. My mum kicked my dad out when I was 8 I never saw him again. I grew up with mum and I had her in my life right Upto last August last year. Never think you are alone because you really are not. It might feel like you are most days and nights. But there’s someone out there just like you and I’m living proof of that, TC!

I thought about my last entry on here, it’s no different to last year when I was invited to light a candle for my mum by the funeral people.

I felt the same that night I walked into the church on my own. I saw the funeral people in the foyer of the church and I said I’m on my own.

The reply I received " No you not we are here with you"

I never forgot those words and it was so comforting and kind of them to say that to me. It’s not easy losing a pearent and having to deal with it on your own. I have a sister and left a voice message on her phone regarding my delay in going into hospital, I not even heard anything back. No text or call back, nothing. Anyone who thinks they alone, I want them to know they not.

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