Hi Helen @hlb I was at the Christie a couple of weeks ago and they have so much there for patients and families. Maggies is a good port of call, as is MacMillan. They do seem to be trying to get the best for patients and families during and post treatment.
2 Likes
Hi, the waiting is the worst for me. me and my head, it goes mad with fears, thoughts and feelings. We are all here to support you so please keep posting what it is feels like being you?
1 Like
Thanks, The Christie has fabulous support staff, they were fab. Iâm sure we wouldnât have got through the last 15 months without them!
3 Likes
Thanks Erica,
I know Iâm a worrier and struggle to put things to the back of my mind. Heâs my baby, my first born and most precious things in the world to me. Heâs good at putting things out of his mind, he thinks that worrying changes nothing, which I agree with, but struggle to have his mindset!
2 Likes
Hi, donât beat yourself, you are a mum with all the thoughts and emotions that brings with it. Amazon still hasnât delivered that âMumâ âHow to be the perfect Mumâ manual I hoped for 45 yrs ago, although I think todayâs version would be very different. We are all individual and deal with things in very different ways. Oh, by the way I think my mind is spherical so fears, thoughts and feeling can go round and round and it does not have a back!!
2 Likes
Thanks Erica, Iâm just letting off steam really. The last few years have been tough on our family and ai think Iâm just processing it all. How are you anyway, you are lovely at giving advice to others, I hope you have someone supporting you! X
1 Like
I have priceless friends who are there emotionally for me, my husband and son donât do emotional, again the practical are their thing. Making me a cuppa is my hubbyâs way of showing caring. How are all your family coping?
2 Likes
Hi Erica,
Friends have kept me going, been a shoulder to cry on and a distraction depending on what I needed. Practical support also helping with my other children. My extended family have been helpful too, but I find it harder to talk openly with family, as I run the risk of worrying them more. My husband and children have coped in different ways, my youngest has really struggled as he is ultra sensitive, and we have gained a lot of support from his school. Heâs old enough to know whatâs going on, but not old enough to really get it! He struggles with real separation anxiety, and I think this comes from spending 15 weeks away from him whilst I lived in the hospital. My daughter really doesnât like talking about things, school has been her escapism. My second eldest is now 17, and he was Jamies stem cell donor. He likes to remain positive, but realistic, and talks freely about it. My husband senses my anxiety, so if I worry, then he worries. So I try to avoid adding to his worry!
4 Likes
Oh thank you so much for your post it is really helpful to me and I am sure will be for others, you really highlight how everyone around you is individual and copes in their own way. I hope you will find this community forum is supportive and a place you can share how you are really thinking and feeling, please keep posting.
1 Like
@hlb hello Helen. It sounds as if you have a lot to deal with and we are here for you to vent whenever needed. You have a lot to deal with with each of your children reacting in different ways. When I was being treated my youngest, still a teenager, put some music on my MP3 player to express his feelings. Last year I was going round Tesco just before Christmas and they played East17 track âStayâ which had me sobbing in the aisles as it was one of the tracks. Another was Bill Withers âLean on Meâ. My daughter and her husband were practical. One of my funny memories was watching my SIL teach my older son to iron his shirts. My older son was the one who made us all laugh, even at my illness.
@Erica You made me giggle at your brain being a sphere. I think my thoughts bounce from side to side, and I can talk about a problem that is totally unconnected with the problem my husband might be talking about. But you know how crazy we both are
2 Likes
Itâs strange how music can take you back to emotions you felt at the time. Itâs also interesting and helpful to talk to the actual person who had cancer. My son really doesnât want to discuss it, his brother, who was his donor, chats freely about things, but Jamie doesnât. His attitude is, cancer has taken enough of me, to give it any more of my time. Talking isnât going to change the out come and if itâs going to come back it will and there is nothing he can do about it. Heâs at medical school, learning to be a doctor now! Who knows, he might want to be an oncologist or haematologist! Xx
3 Likes
Hi @Pisces56 and @hlb yes, I absolutely love my music and every song takes me back to a memory, I didnât realise it until you both said it. I think I also try to say things through songs as opposed to saying it to the person. I think I am in my own little world or sphere really. My husband and son will only talk about my CLL if I raise the subject however as I wear my Bloodwise red tee shirts nearly every day they cannot really forget. By the way you will be pleased to know I do wash them every day!!! My husband is not a feelings person but a shut himself in his study doing practical things person and I do not know how my son thinks as he hides his feelings behind a sunny, carefree aspect. And what am I? I suppose I come across as the coper and carer, not sharing my fears, thoughts and feelings and with a smiley exterior, but I am getting better with my Bloodwise Buddies. Families, eh!!!
2 Likes
@hlb I can understand you finding it difficult to speak to family members regarding cancer and trying your best to not worry anyone. I can also understand why your son Jamie, doesnât want to speak about it very much since you said it has taken so much out of him, he doesnât want to give it anymore time. You are such a strong individual and I know your son will do amazing in medical school. Have you tried any speaking techniques or getting the family all together to speak about it openly and honestly?
1 Like
I am chuckling away here as I can just visualise the look of terror in my husbandâs and sonâs eyes if I asked for a get together to speak openly and honestly !!!
1 Like
I think they would humour me and hear me out. but try and run away as quickly as possible !!! That doesnât mean they donât care, but would show their caring practically, my husband shows it by making my hot chocolate in the evening, mind you I do tell him he makes it better than me !!! Oh, I am still chuckling here.
1 Like
It is so difficult for you, being the one dealing with everyoneâs different ways of coping. And whilst everyone has the right to cope and deal with it how they wish to also so do you. Feel free to vent, offload, share in this forum if you feel you need to.
I spent 6 months away from my daughter while I had treatment in hospital for AML, she was 8 at the time, so I can sympathise with your youngest separation anxiety. She is 11 now and seems to have settled down ok although we still have wobbles now and then. I told her that she could talk to me and say anything no matter what it was, she had a little white board that she would write things on because she didnât want to say they out loud, she wrote me letter and left them for me to read and had a diary for her feelings. Sometimes the things she wrote were hard to read but we addressed them openly and it did help her come through it.
I think as a mother and wife you do âholdâ the family together emotionally, I know I do.
2 Likes
When G and myself were asked to talk at a Wellbeing event recently it was an education as it was the first time he had spoken publicly about what he went through, and we also saw our youngest the night before and he spoke about things that I never knew. G does not remember that when he got home after leaving me at hospital, that he poured himself a pint and lit a cigar and stood in the garden for half an hour without saying a word to our son, and that was when our son knew it was really bad news. It was also the first time (after 11 years) that G told me that when I went into the operating theatre he didnât think he would see me again
2 Likes
Hi everyone,
My boy came back from uni for two nights to spend the day at The Christie hospital. He had his bone marrow re taken and also see the doctor and discuss what is going on, although he wouldnât let me go in with him. The last bone marrow he came back as inconclusive, they found that one of the markers came back positive for residual disease, one was negative. We now have to wait for the results of this bone marrow. Itâs protocol to put him back on Imatinib, which is the targeted cancer drug, which he will now stay on for a year. The doctors also discussed what will happen if the next result is the same. They will take some more cells from his brother I believe. Iâm really worried and was really not expecting this result. We have another three weeks to wait now though, and I feel like time is standing still,
Love to all xx
2 Likes
Hi, thanks for updating us. It must be a anxious time for you all, the not knowing is just the worst, my mind just goes into overdrive, what is it like for you and what is it like for you that your son wonât let you go with him, keep posting we are all here to support you?
2 Likes