Thanks Erica, It did feel like the final straw. I was calm after seeing him but now when something goes wrong I immediately think the worst!! I have only two family members left but also have good friends who have all been great. My mind just runs riot when I am living alone for now with husband in hospital. But, I will slowly get my head round it and find ways to distract myself as worrying benefits nobody. My husband is in the best place to deal with the side effects so i will hold onto that…thanks Erica
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Hi @Catpat just give yourself time, you have had a terrible shock so recently and suddenly you are on your own in your home.
I know me and my head can be worst enemies. It is like a washing machine going round and round with fears, thoughts and feelings, for me the darkest hour is just before dawn as the Mamas and Papas sing.
As the saying goes try to keep it in the day, music and pilates are my best diversions, but you might know of other techniques. Keep posting you are so self aware and everything you say is so natural.
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It must be so difficult not being able to visit as much as you’d like. Are you able to use the wonders of technology? I know it’s not the same. How is your husband coping?
I think it’s really brave giving the helpline a call. I’ve used them and am so glad I did, however hard it was to dial the number. We all need a little bit of help sometimes and would give that advice to others but it’s always harder to take the advice ourselves.
The forum helped me so much before I became a volunteer (and still does) and keeps me sane. We all know what it’s like at the beginning of this journey and we all need places like this to share. I also know how hard it is for the other half and how you need looking after to, as @Erica said, the unsung heroes!
What do you do to relax and keep yourself busy?
You take good care of yourself and let your friends do the same. I’m sending a huge virtual hug. Keep posting X
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How are you doing @Catpat?
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Hi Nichola
Doing ok. How are you? Hubby is floored with the chemo this week so another bumpy week. ( The no visiting rule is so difficult as he isnt really chatty on the phone but when I’m there he will talk for ages) Had a great conversation with the doctor though who reassured me that this is to be expected as his blood cells will all be flat as the chemo has killed off all the healthy cells just now. would it be ok for me to create a new post to see if anyone else is on the ATRA/Arsenic treatment for Acute Myeloid Leukaemia. I have had a look through the forum and cant see anyone who is on this treatment, but I may have missed it…I hope you are doing well and taking care of yourself. Thank you for taking the time to message me when you are dealing with this illness yourself
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You would be so welcome to create a new topic asking that @Catpat! Very best wishes to you and your husband - please do give us a call on the support line if there’s any info we can send you both.
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Hi @Catpat yes, it is a roller-coaster business for your husband and you, you must feel so lonely and isolated, who is there for you?
Well the answer to that is it seems the doctor is and your forum family here.
The Blood Cancer UK support line is also there for you.
That sounds a great post to start.
You are one of the unsung heroes as a partner and so please keep posting and look after yourself
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I’m not good on the phone either, much better in person or by text. However, that doesn’t help you when you want a catch up and a chat.
It’s great that you are going to start a new topic, that’s what the forum is all about. I hope you find somebody who can share experiences.
I’m ok thanks. Work is exhausting. It’s great that I’m now down to 31/2 days. However, I feel like I’m going a full time job still.
Take care of you to and keep is posted X
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Hello all. Been a while so thought I would update. Emma had her transplant on the 26th November. She was in for 5 weeks, so 1 week of TBI then 4 week recovery after transplantation.
She had a T repleted donor infusion and along with that, TBI and post transplant chemotherapy they whacked her as she was still MRD positive, even only very minor in nature the leukemia was still present. Also as she had multiple sarcomas ( uterus, liver and pancreas) it was the only option.
She is on Day +54 now incredibly and doing well. She is on so many tablets she is rattling, cyclosporine and many more and now 12 X prednisolone a day to control some pretty nasty Graft-versus-host-disease of the skin. But apparently that’s good.
About day +40 her face started to swell and rash so she needed the steroids to control it
Met the consultant yesterday and her chimerism is now 100% donor cells. That’s brilliant so far although we know it’s a long way to go we hope 2022 is much better than 2021.
Every day is a blessing as she was only a week from death at presentation.
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Oh @Jdl003 great to hear from you and I am so glad that Emma has had her transplant and is doing well.
How are you doing?
Please keep posting and look after yourselves.
That’s so great to hear. Must be such a hard journey for her and all of you. Thinking of you all and sending special wishes. Take care and keep us updated. What an amazing woman she is! X
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Great to hear Emma’s doing ok now, @Jdl003. Wishing you both loads of luck, good health and happiness in 2022.
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Good to hear that Emma is doing well…Does not sound like a straight forward journey but everything looking positive. Wishing you all the love and strength in the world…
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I’m terrible on the phone so know exactly how you feel @Catpat . Especially bad at medical phonecalls as I only remember what I wanted to say after I’ve rung off and then I’ve missed the whole purpose of the call because I got sidetracked by the doctor. I hope things improve for you @Catpat , it sounds like a terrible time for you and your husband.
Great that things are going better for you @Jdl003 and hope they continue to do so.
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Hello @Catpat , I’m sorry it’s taken me a few days to reply, I only come on here every now and then.
The side effects of treatment for Acute Myeloid Leukaemia can be very severe but as my consultant told me it’s an aggressive cancer so it needs that strong treatment to deal with it, and because it’s a blood cancer the treatment can’t be as targeted as it can with other cancers so they give you some very nasty stuff which brings you right down and then build you back up again. But it IS curable and I hung onto that. I find it hard to remember how bad I was now and I hope that encourages you on behalf of your husband. It felt like such a low point when I got very weak but it does pass and looking back it wasn’t really for that long, although building full fitness back up takes a while especially with shielding and lockdowns. Everyone has different side effects from chemo - mine was mostly some nasty skin rashes and I lost my skin all over my body which once I’d got over it left it looking amazing for a while! I didn’t have the treatment your husband is having - I’ve looked it up and it looks to be very effective. I went into a trial but through the luck of the draw ended up with a fairly standard chemo regime. So far (I’m almost 2 years post chemo) it seems to have worked well and my consultant is very pleased. I’m sorry that you’re having to cope with the additional stress of visitor restrictions. This must make everything so much more difficult and I was glad to see from your later posts that you have decided to use the helpline. Get as much support as you can and this group is a brilliant resource which I didn’t really discover until after I’d completed treatment. All the very best of luck to you and your husband.
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Good morning @Catpat. It’s so great that you can share your experiences which I know will support @Catpat and so many others. It sounds as though you are doing really well at the moment?
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Hello Roskie, thank you so much for replying and congratulations on being two years down the line. Your comments are really helpful , as you said it will pass. I think when its the first intense induction phase then you think that you will never feel well again. He’s on some steroids for the gout which i thinks perks his mood up a bit and his phonecalls the last few days have been better and he is up and walking about a bit. Funnily enough he said he had a skin rash yesterday (i think he is determined to try as many side effects as he can lol). Thank you for your kind words and I wish you all the best of luck too.
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