Hi everyone. Five weeks since my last post. Consultant and regional leukemia panel decision is no more chemo for me after three out of four cycles, my bloods have only just recovered to normal range since last cycle of chemotherapy (12 weeks) and my platelets are still being as slow as a tortoise. This has led to bad anxiety, what if I relapse, panic attacks about going outside the house mostly because Iam uncomfortable in my body and appearance, so Iam seeing a macmillian counsellor to somehow help me cope with it. Does anyone else feel more alone after treatment? I feel like the safety net of cancer is now gone if that makes any sense? 
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Oh @Caroline30 yes, your post makes absolutely perfect sense to me.
I think, and this is a personal response, not a medical one, but my experience.
My recent diagnosis, with another condition, was all consuming and so were the tests, appointments and treatments.
Then suddenly âcome back in 6 mths time, byeâ.
I felt alone, very lonely, uncared for, unmonitored, bereft, but I am not cured, what if I relapse, what if etc.etc.
I then had too much time with just my mind and the 'what ifâs, and my anxiety really set in.
As for my body and appearance I have had skin cancer and I have had 2 operations on the top of my head at different times and I have thinning hair and look a cross between Friar Tuck and Worsel GummidgeâŚ
If I worried about my appearance I would never leave the house, but now I donât care, it is the others persons problem, not mine.
Yes, I did see a counsellor when I was first diagnosed with Chronic lymphocytic leukaemia (CLL) and it helped me.
You are never alone with your forum family, be ever so kind to yourself and keep posting here, thanks so much for having the courage to be so honest and please do keep posting.
Ahh @Caroline30 , so glad you found the strength to come on here and share your fears and where youâre up to.
Glad youâre getting support via councillors.
I agree I had a wonderful Anthony Nolan prefab nurse before the stem cell transplant who was amazing and went through so much with me. Post transplant when it was all going wrong with complications and re admissions I felt so alone. I used the forum as I didnât feel able to chat about it all to my consultant team. I wished my CNS had been there but they never were.
In between my admissions I saw the prefab nurse by chance at day case unit and she made time to chat and listen to me. I shared how hard it was and on my last admission she came and visited me on the ward. Even though itâs not here role. She arranged support visits from others too. I guess my message is reach out to your team members and share your feelings of loneliness. Maybe theyâll be able to help. But itâs normal Iâd say to have the anxieties you have I think. I really struggle and despite being around 10â days post transplant Iâm hardly doing anything yet. But thatâs ok as we have all have our own speed. Take care of you
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When you go for appointment with consultant and CNS nurse is present you know it is not going to be the best news, my platelets have dropped quite a bit from last month, could be result of a fall I had last week resulting in extensive bruising 
so BMB on 31st then two week wait for results, my anxiety is now in overdrive mode, thought I would only have to find the extra strength to get through my deceased daughterâs birthday on the 30th 
but now I have to stretch it even further 
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Oh @Caroline30 What a difficult time of year it must be with it being your deceased daughters birthday on the 30th I am sure that will take all your strength.
Perhaps just take it a step at a time, and be ever so kind to yourself, try and keep your life as simple as possible so you can use your strength where it is most needed.
The Blood Cancer UK support line is there for you on 0808 2080 888.
Please do let us know how things are going, I will be thinking of you. xx
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Hi @Caroline30,
I am glad to hear from you and I completely relate to your experience of anxiety post transplant.
I feel exactly the same with a huge fear of relapse and not enough support to deal with it and get reassurance.
I contacted the ward psychologist to help me and I will have bi weekly appointment with her going forward.
Do not hesitate to reach out if you want to talk about it!
@Jilly how are you doing ? I hope things are getting better on your side.
Lots of hugs to everyone here
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Good morning. I had bone marrow biopsy on Wed. Ask for Oromorph beforehand and it will help. Itâs not pleasant but most of it is fear do chin up itâll soon be overâŚ. Remember to ask for Oromorph
Good luck!
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Hi @NikkiNoo glad you got your bone marrow biopsy done and thanks so much for your handy hints.
Please do let us know how you get on and be very kind to yourself
Hiya,
Iâm ok just taking it a week at a time. Still at home and infection marked behaving. My BMB came back 
immature male cells with no blasts 
so lots of donor in there which is great. My last Chimerism test was falling so a little anxious but repeat will be next week. My consultant reassured me itâs still high enough for now so here hoping.
Iâm on steroids for Graft-versus-host-disease at the moment so dreadful insomnia some days but hey ho.
Been thinking of you @Caroline30 hope things are settling for you: @Mmepages the anxiety post transplant isnât fun. Iâve self referred for some support also.
Take care and be kind to yourself
Jill
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Hi everyone
After two week wait from bmb, appointment with consultant today confirmed relapse. I sort of suspected it but still a shock nevertheless,
consultant apologised that I was not in a safe place to complete my previous chemotherapy has then the outcome could have been different.
Plan is back to isolation next week, Penny picc line will be back, more aggressive chemo I think flagda was mentioned, and Stem cell transplant to give me the best chance long term.
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Oh @Caroline30 I am so sorry, I donât suppose it helps that you suspected it.
I am glad that you know the plan.
Please do keep posting how you are doing
Be very kind to yourself and look after yourself xxx
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Hi @Jilly
Great news and happy to hear things are going in the right direction. I have the same regarding the chimerism and the doctors want to wait for me to have stopped the immunosuppressant before doing another biopsy. I think it will be around second week of December now and it seems quite close from the one I had in October but I guess it is for the best.
Keep letting me know how you are doing, I love to hear from people going through similar things.
@Gerard how are you doing ?
Xx
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Hi @Caroline30
I am sorry to hear about your relapse, especially if it is at the same time as other difficult memories.
You are stronger than you think and there are a lot of ressources to help you.
Please keep us posted, Iâll be thinking about you a lot 
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So sorry @Caroline30 to hear your news. Just go day by day and know weâre all here rooting for you.
A few of us have recently gone via the stem cell route so can chat about experiences when the time is right but donât worry about it.
Youâve got inner strength that you wonât know you had bit it will get you through. Sending hugs and keeping you in my thoughts.
Jill
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@Caroline30 really truly sorry to hear that news. Sounds like you have been on a really tough journey.
If itâs any help, I have had Flag-Ida and a stem cell transplant less than 2 years ago and I am still in Complete molecular remission, So donât lose hope.
The people on here are so great and a real source of help. Remember to be so kind to yourself and take every bit of help you can get. This is an incredibly difficult journey you are having. We are all in your corner and cheering you on 
Best and strongest wishes and thoughts to you
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Sorry for long silence everyone, I lost my login.
Dont like to tempt fate but I think Iâm relatively OK. Day 161 post Stem cell transplant. Tummy is still my Achilles heelâŚ
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Hi @Gerard I am glad that you have found your login and really pleased that you are relatively OK.
I hope that your medical team are assisting with your tummy problems.
Please do keep posting and really be kind and look after yourself, you and your body have been through a lot.
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Hi @Gerard,
Great news your doing ok, Ive lost count of what day post I am, but im a month behind you. I get the not tempting fate part though.
Things are settling for me now, some skin Graft-versus-host-disease requiring steroids but weaning these so hopefully will get off them. Its strange I feel more like me again and filling the days is harder now I have more energy but thats probably the steriods.
Just wondered if you have had any vaccines yet? I am due my flu and covid end of this month and hope they wont floor me.
Take care Jill
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Eighth day in isolation and three days post chemo for relapse. Flag but not IDA and the gcsf injections, still having these which gave me lower back and tummy ache for one day but sorted with paracetamol, up to now the only issue I have had. May only need this round to go into remission then a Stem cell transplant, depends also on the time it takes to get to that point. Hope to find me a full donor match but as anyone had a half match from their children?
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Hi @Caroline30 thanks for your update.
I hope someone will be able to answer your question about half match children as potential donors.
Please do keep updating us how you are doing.
Be very kind and look after yourself.
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