Hi @summer123 gosh I really feel for you both, it’s that lack of clear information that with me means my mind goes off in all directions.
Please let us know how Friday’s appointment goes.
It helps me to write down my fears, thoughts, questions and practicalities that I want to ask because as soon as I walk into a hospital my mind goes blank.
It is natural to have extra bad days sometimes and we are here for you both, look after yourself and please keep posting.
Well what a rollercoaster of emotions this is. We saw husbands consultant this morning and she said his blood tests were an anomaly! In fact the biopsy results are better than a couple of weeks ago, no cancer detected in bone marrow but still some in brain. So Consultant is trying to get him admitted this evening to start the Intensification stage of chemo. Last Sunday we were apprehensive of this stage of chemo, today really happy its going ahead. Todays a good day for us hope.
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Yes you certainly are on a rollercoaster @summer123 . I hope that you both find the strength to get through this and needless to say I hope it all goes well. We’re all here for you on the forum.
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@summer123 thanks so much for updating us. A rollercoaster is the only word for it. I think we tend to get so anxious because we feel we are out control and also do not know the outcome.
I am so glad that today is a good day for you both, sit with it and celebrate.
Hi all
I hope nobody minds me jumping in here. Just like the original post my husband was diagnosed with ALL at the beginning of December after taking unwell at work. He is 63.
Just 4 days earlier we had been on holiday in Madeira celebrating my big birthday. He now says he felt unwell but didn’t want to spoil my celebrations.
He was in hospital for 10 days and initially was going to be started on the aggressive chemo but they changed their minds and as he is over 60 have planned the less aggressive oral chemo. They said it was not as effective but gave him more of a chance of getting through the treatment. He also gets to be at home.
He is in his 4th week now of his first cycle and he just seems so unwell. He doesn’t eat and is reluctant to drink as he has been very nauseous. He is sleeping most of the day with no energy. He has lost 2.5 stone in these 4 weeks. Last Friday I called the advice number and was told to take him to a&e which I did. I couldn’t stay with him but they gave him fluids blamed his blood sugars, he is type 2 diabetic, and sent him home.
He is off to his weekly appointment today at the hospital. Because of covid I have to leave him at the door. I am hoping I can be present for his clinic appointment on 21st.
We have both been very positive and he has been told that the goal is to get to stem cell transplant. I am also a nurse and a realist.
I also get frustrated and guilty as my emotions and thoughts are all over the place as I try to keep everything normal at home. Everyone is trying to be so nice but its doing my head in as there are very few people I can be honest with as I fear for a future which is so uncertain.
Debbie
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Oh @Debbie36 I know how you are feeling. You are both still in shock, and its so hard to take in all the kind words without wanting to scream shut up you don’t know what we are going through. I felt guilty as I want to say sometimes but what about me, how am I going to cope, who can help me.But it does get easier and although I wouldn’t have believed it after 5 months I feel as though its not on my mind 24/7, for my sanity I try to go to a Pilates class each week and do things for myself. Is he on the ALL 60+ protocol, the first few months are hard and a rollercoaster of ups and downs and emotions. My husband got through with induction and intensification stages reasonably well and is in remission he is on consolidation at the moment but his blood counts are all over the place so treatment is a bit stop start to try and adjust doses. He has little or no nausea now and has put on most of the weight he lost. He is very tired most of the time, has terrible gout, joint pain and constipation but all manageable at the moment.
Its really hard not to be together when he goes into hospital for stays and treatments but his consultant does let me go in for monthly check ups with her. I have learnt to write down all our questions as I go blank once in her office.
My husband has been told he probably won’t have a Stem cell transplant but will be on chemo only.
I used to hate when people said take one day at a time, but I do appreciate that after bad days you do get good days
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Sorry hadnt finished. I hope everything goes well and you get to see your Consultant on 21st. I will be thinking of you.
Feel free to ask me any questions if you think it will help.
Jill
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Oh @Debbie36 your range of emotions and thoughts are likely to be all over the place and as usual as a spouse/carer you are trying to keep everything normal at home.
A diagnosis of blood cancer does rock your world and what had seemed mapped out certain now feels scary and very uncertain. Give yourself time and try, I know it is difficult, to keep it in the day.
If you feel you might like to talk to someone you do not know Macmillan Cancer Support might offer some counselling sessions or your GP might be able to suggest local services.
It must be so scary to see your husband deteriorating.
I hope he is saying it as it is at his hospital appointments and for peace of mind that you can accompany him on the 21st.
You two might be able to put your heads together and write down all your fears, thoughts, feelings, questions, practicalities you would like to ask on the 21st.
Appointments are your opportunity and a two way process.
Madeira is the one place I would like to go to and the perfect place to celebrate a big birthday.
Please let us know how you are both doing and be kind and look after yourselves.
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Hi @summer123 and @Debbie36 , yes, what about you, a very good question, spouses are the unsung heroes.
We are here for you to sound off too.
Be really kind to yourselves, you are clinging on to this emotional rollercoaster you have been forced onto.
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Hi Jill
Thank you for your thoughts.
Yes my OH is on the 60+ protocol.
They reduced the oral chemo back to 400mg which had been increased just last week to 600mg.
Hopefully he will have a better week.
Debbie
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Hello @Debbie36, thank you for posting and I am sure that you will find our Forum supportive and welcoming. I also wanted to offer our support if you and/or your husband needs it as it is such a challenging and scary time. Please do contact us if you need Blood cancer information and support by phone and email | Blood Cancer UK. Kind regards Gemma
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Life seems to currently be going for the little wins.
Its sad that I’m excited that my OH asked for a small fish and chips from his favourite chippy. He polished off most of it.
Went into the office, only second time since end of November as I’ve been able to work from home, when I came home OH was up and dressed and had made himself some lunch.
He is still very tired and sleeping a lot but since chemo meds were reduced is no longer nauseous. Just waiting for next weeks clinic appointment to see if he has been pushed into remission.
How is everyone else doing?
Debbie
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Yes @Debbie36 a very good philosophy, go for the little wins and baby steps.
I bet not being nauseous makes such a difference.
Oh, I can smell the fish and chips from here, nothing like it.
I hope you are really looking after yourself as well.
Be kind to yourselves and keep posting.
Does this ring any bells with anyone else?
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Oh Debbie that does sound good, my Husband after nearly 6 months still gets very tired but we are used to working around this. So glad your Husbands appetite has come back a little bit the nausea is horrible. My Husband is sitting next to me scoffing a large tin of gingerbread biscuits that he had for Christmas (someone said ginger was good for nausea so bought him a tin) and listening to the football on his headphones so is very happy. Its so nice when you have a good day I try and remember these when we have a bad day, we have found that as time has gone on we have more good days than challenging days.
Please let us know how he gets on next week, our next appointment isn’t until the 28th as he has just had a session of Inthracal chemo in his spine so they leave him for 2 weeks before next check up.
As Erica says look after yourself and give yourself time to breathe and do things just for you.
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News from todays hospital appointment my OH has been pushed into remission with his first cycle. That’s round one under our belt a long road still but a great start. Starting cycle 2 next week.
Had a lovely comment from the consultant who thanked me for doing a great job at keeping my OH well through the cycle. That was lovely.
Hope your all keeping safe x
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Oh Debbie I am glad your husbands treatment is going well but I am absolutely overjoyed that his consultant recognised you as a partner, carers are real unsung heroes and I hope you can both celebrate the small wins.
Look after yourself as well as you look after your OH
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Oh @Debbie36 that is good. Fingers crossed it continues to go well. And so good your Consultant recognised that you are partners in more way than one. Remember to keep yourself well also. My husband although very well is off chemo again on his second round of consolidation as his blood counts once again all over the place. Hope this week’s blood tests bring better news. Debbie, continue to let us know how your husband is doing.
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Yes, @summer123 you are the real unsung heroes it must be so hard for you and perhaps that it is why it is so important that you look after yourself as well as you look after your husband
That’s great news @Debbie36. What a lovely thing for the doctor to say. You sound like you are doing an amazing job. Make sure you take good care of you to X
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I have a question.
How do you find time for yourself? Work, family, OH, church commitments and household tasks. Not looking for the sympathy vote because I know you are or have been in the same boat. So seriously how do you find time for yourself? And what does taking care of yourself look like? I have no idea and I can feel the squeeze.
Thanks Debbie x
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