I don’t now how I feel right now tbh. After 4 days in hospital due to anemia, hemoglobin of 48 and 4 blood transfusions, my counts are no where near high enough to continue with cycle 3 of chemotherapy. Sending me home and checking my blood counts twice a week in day unit until or if they improve enough to restart treatment. Consultant reassured me that they have seen this before and are not worried about me. I now have the what if going on, what if counts never rise, I cannot have anymore chemo, what happens then, questions I know consultant went through but my brain didnt quite process. I shouldn’t have been so confident in everything going smoothly, it has come back to bite me on the bum!
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@Caroline30 be kind to yourself, you are doing an amazing job and you’ll be back starting chemo in no time. Perhaps you could re frame your thoughts to try to make the most of the time at home. I know this is hard as I find it difficult every time there is a bump in the road but we try to be pleased to have a nice dinner at home or an extra night to sit in the garden.
We have a family friend who went through Acute myeloid leukaemia (AML) 10 years ago who told me at the beginning that there will be bumps in the road, and accepting that is half the battle.
Lots of love to you.
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Oh @Caroline30 those ‘what if’s’ in the mind are horrible aren’t they.
If, very naturally in my book, your mind did not process all your consultant said then perhaps ask to speak to someone and ask all those questions that you would like answers to.
really look after yourself and please do keep posting how you are doing.
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Heya @Caroline30
You are bound to be feeling low but try not to be hard on yourself. The waiting can be overwhelming but your body will do its thing in time.
Could you speak to your clinical lead nurse to go over things and re-ask your questions? Danae’s is amazing and spends time going over things.
We are thinking of you and sending love. Be kind to yourself and keep us posted
Sarah xx
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Sorry to hear all this Caroline. Deep breaths and remember 1 day at a time. You’ve got this and it’s ok to not feel ok with it all. Agree speak to your CNS if you can. It’s really hard post chemo with fatigue to concentrate so don’t beat yourself up on what you can and can’t remember. Sorry about your daughter hope you got to honour her memory. Take care and be gentle with your self
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Feeling fed up. It has felt so much longer than two weeks back and forth the hospital for bloods to be checked then transfusions everytime. Want me to have bm biopsy hopefully on Thursday, even though I have had no chemo, so haematology will have a better idea of my treatment going forward and come up with a plan, bloods are very slow in recovering so maybe can help with that. Platelets are good though up from 7 last week to 21 today. I know I cant change things but can’t help but worry, just want to get on with the chemo, been eight weeks since I finished my last cycle.
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Oh @Caroline30 I can feel your frustration when reading your message. You are right in the thick of things and I can imagine how challenging it is right now for you.
Naturally, I don’t have a solution but I want to tell you that you’re doing a wonderful job. Two weeks has passed - that in itself is progress.
My husbands was very slow to recover during his last round of chemo. His consultant called it ‘sluggish’ which wasn’t very reassuring, but I want you to know you’re not alone.
Have you been able to do anything nice during your time off chemo?
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@Toadmum. Thank you for the reassurance. How long did your husband’s take if you dont mind me asking? Did he eventually get his chemo? I have spent quality time with my grandchildren making memories though it has also knackered me out! But Iam grateful for the little things.
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Spending time with your family sounds the perfect way to spend your time.
Yes he did get the chemo - he’s just going through his stem cell transplant recovery in hospital at the moment.
His probably took 9 weeks during the last round , and actually really only started to recover properly as he started chemo again pre transplant. He was receiving regular platelets and blood transfusions as his levels were constantly fluctuating. He had had quite a lot of chemo by this point and his consultant didn’t seem overly concerned but it was very frustrating.
We have a family friend who had Acute myeloid leukaemia (AML) ten years ago. His platelets never get past 75 even now and his haemaglobin never past 90, it is his new normal post chemo.
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Hi
I am in hospital post transplant 1 week now.
The pain has been terrible anyone else experience that?
Drugs just going last and feel crap with so little sleep
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Hi @Jilly congratulations on your transplant. Hope you are managing to get some rest even if you aren’t sleeping.
My husband is on day 18 from his transplant, and I think he said day 5 or 6 to day 11 or 12 was particularly hard for him. I’m not sure he was in a lot of pain but he said his throat and mouth was very sore, his stomach upset and he just felt generally rubbish. He’s feeling much better now and is back to eating and feeling in better spirits.
Take care of yourself, you’re doing a great job. Keep talking to your medical team about how you feel and remember you’ve done a week, so another week and hopefully you’ll be feeling brighter.
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Oh @Jilly I am so glad that you have had your transplant but it sounds as if you are going through a really rubbish time.
Yes, as @Toadmum says keep talking to your medical team and just take it a day, an hour or a minute at a time.
If you cannot sleep, just rest and remember you and your body have been through a lot medically, emotionally, psychologically and practically.
Please do keep posting how you are.
Be very kind to yourself
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I have been feeling really down since the weekend. I reached out to the macmillian support line, I find social media difficult, people doing things I wish I could do but a constant reminder that I can’t right now, I have missed so many special occasions already. I just want to feel and look like me, Iam not liking what I see in the mirror. Yesterday my hemoglobin was 72, but needs to be a bit higher so had blood transfusion, platelets 29, neutrophils 1.22, white cell count 2.6. Had BMB last Thursday 11th, appointment with consultant next Wednesday 24th to discuss results and bloods, hopefully he will be happy and fingers crossed I get to start my third cycle. PLEASE!
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Hi @Caroline30 I am sorry to hear that you have been feeling really down since the weekend.
Don’t forget the Blood Cancer Support line is also there for you on 0808 2080 888.
Personally, not medically, I would say when you are having or had treatment it is likely to affect you emotionally, physically, psychologically and practically.
Perhaps just be ever so kind to yourself.
I will have my fingers and toes crossed for you on the 24th, please do let us know how you get on.xx
So sorry that you’re having a hard time. Erica shared some wonderful advice but keep being kind to yourself.
Your bloods sound like they are doing great! Amazing job on the neutrophils. My husbands blood and platelets are always the last to improve after the neutrophils. My husband was usually allowed to start his chemo if his neutrophils were above 0.5 but I imagine that it is chemo regime specific!
Hopefully your medical team will give you the go ahead very soon 
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Awww @Caroline30
Hang on in there…. Your bloods are sounding good 
Rather than focus on what you may be missing out on perhaps try to plan stuff to look forward to when you are feeling more like yourself.
Take things easy for now and keep us posted
Sarah
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Hello all, hope @Gerard @Caroline30 are feeling brighter. I am day 19 post transplant and starting to feel more like me again. It’s been very hard and mentally I thought I was stronger but this stay has broken me. My CNS and team have been amazing to support me and I’ve allowed the tears lots of them. The pain is easing and I’m showing signs of engrafting. Hopefully not too long till home I’ve not seen my kids since 28th June, they are 13 and 8. I miss them terribly.
Remember with each treatment your put through a lot and it’s ok to not feel ok but my advice talk about it like @Erica says
Thanks for the ongoing support. Jill
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Hi @Jilly thanks so much for the update.
We always talk about the medical aspects of a transplant which are massive, but thanks for mentioning the mental aspects and the emotional side.
It sounds as if your tears are very natural to me and personally I am glad you are letting them flow.
Perhaps your batteries are very depleted emotionally, as well as medically and physically, after what you have been through
It must be so, so hard not seeing your children for so long and perhaps another part of your tears are your isolation and loneliness you have been in.
Be ever so kind to yourself and the Blood Cancer Support line are there for you on 0808 2080 888 and so are we, please do keep posting
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Sounds like you are doing amazing and I am sure it won’t be too long till you can come home! How are you feeling in yourself? Sending you lots of love and good wishes for recovery!
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Hi Erica, I have just come across this forum, and would really appreciate the support system. My beautiful daughter Lily turned 17 on 10th May, and wasl an inpatient at Alder Hey childrens hospital in Liverpool for 10 months. She is now living at home, but has to go back to the hospital everyday, 7 days a week for an antifungal infusion, as she has a rare fungal infection, on top of everything else.
She was diagnosed with ALL (Acute Lymphoblastic Leukemia) on 22nd Sept last year, and my world collapsed. I honestly felt like I would die of a broken heart.
And I still feel this way.
She had 5 weeks of aggressive chemotherapy last Sept/Oct, and I was staying over in her hospital room one night when she had 4 ‘grand mal’ seizures, each lasting 2 and a half minutes, was transferred to intensive care, in a coma for 3 days, and when she woke up she said she was paralysed from the waist down.
Her nerve endings are coming back and she has having to learn to walk all over again, on a zimmer frame and crutches.
She had waist length blond hair, and is heartbroken as she is now bald (she had planned to study a hair and beauty course last September).
She has completed 5 weeks of chemotherapy, 9 weeks of immunotherapy, and another 5 weeks of chemotherapy, and is now on ‘maintenance’, which is lower level chemo.
She will be receiving treatment until October 2025. We are all broken as a family. I don’t think I will ever mentally recover from this.
I went back to work in January, and work 3 days a week, mostly from her hospital room using the hospital wifi, and caring for her in between, as she can’t do anything for herself. Now she’s based at home, after 10 months solid in the hospital, I will be going back to work full-time in September, mainly for financial reasons.
Its heartbreaking. And my 13 year old boy has found it very difficult, as I’m mostly at the hospital and hardly at home.
Although we had hoped she would be in a position to start college this September, having deferred her place from Sept 2023, the reality is that she will need a further year of rehab before she is able to progress onto college. I really hope I can get some comfort and success stories from this forum, possibly from parents of other teenagers who have overcome ALL and gone on to lead normal lives, so I am reaching out in this hope. Clare
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