Glad that you were able to let out how you are feeling @Moo , it can all get a bit much at times. I hope that things get better for you soon and do keep us up to date.
They are in the main, good - thank you Good to be on here.
@samsym it’s good to have you on here, I look forward to hearing more from you.
My partner managed 4 weeks at home and then spiked again. Back in a&e, but this time a week day and only 7pm, (Not like our usual 2am Sunday morning rushes!) which meant I could grab something to drink from the shops while waiting for news, sat on the pavement outside a&e having been told I could not stay again. He spent a week in hospital and was discharged last Tuesday with me again administering intravenous antibiotics. However he just spent most of the day in bed and the deterioration in the last week was awful. On Sunday (early hours again) we were back in a&e with fever, vomiting and rigors, despite him being on antibiotics. I was allowed to stay with him for a couple of hours, before coming home to attend to the dogs and grab a few hours sleep. I just felt the world was falling around us. My big strong partner who cared for us all reduced to this, it seems so cruel.
I was called back to the hospital yesterday where I stayed with him until 11pm. They are trying to make him comfortable, but the infections are now uncontrollable and he is suffering and emotional. He’s having platelets daily now. We just lay together on the bed and although I didn’t believe it I told him we would all be OK, as his huge warm heart means his biggest worry is what happens to us and not him. I feel sick with anticipated grief, can’t sleep or eat. We have been through so much in the last 16 months and none of the treatments he had worked for any time at all. Having read other posts of loss this week, my heart goes out to everyone in a similar situation. I know that sadly I’m not alone.
Oh @Moo, what an absolutely terrible time you have both been going through and as a partner/carer you are absolutely powerless and unable to make things better.
We are here for you as is the Blood Cancer UK support line.
This is a place that you can really say how it is for you.
You must be absolutely exhausted, worn out, drained, scared and so many more things.
Please keep posting and I am really thinking of you xx
I am so sorry you are both having to go through this. You have so much going on and as @Erica said, you must be overwhelmed and exhausted. It must be so hard for you both and you are having to be so strong through all off this.
We are all here to listen whenever you need us. I wish we could make it all just a little bit better for you.
Please take care of yourself and keep posting.
Sending extra special wishes X
Thank you @Nichola75 and @Erica. We had that horrible conversation with palliative care and a couple of doctors staring at us round the bed. We looked at getting him into a hospice for a couple of weeks, where it would not only be me who could visit, but as he is having red cells and platelets daily now, he can’t go as a hospice can’t give HLA platelets. He’s so upset now and on top of that says he feels like he is in solitary confinement, and he’s done nothing wrong. We are trying to get him home, but he does not feel well enough to get to hospital 4-5 times a week for transfusions so we are stuck in hospital for now. I have been allowed to visit him 4 times this week and stayed until 11pm each time. I feel so helpless, I just want to take it all away from him. Bank holidays make it even worse, as we are always on the road to Dorset or Cornwall, and we would be away in our holiday home we were doing up in Cornwall right now; the sadness that we can’t get there together again is overwhelming. My elderly mum has come to stay with me for some 24 hour emotional support, as I feel sick and anxious and can’t sleep. Still hanging on for some miracle as always, and just sending him so much love and as much comfort as I can.
I was wondering how you and your husband are doing after you posted as you were waiting for a BM biopsy?
I do hope it all went well, and thank you for your reply to my post it helps to know that others have/are going through similar things, although I really wish no-one had to bear this. I was also wondering if he had been offered/ or mentioned about a BMT, as we never got that far?
Sending love back x
I think we always have to hang in to that hope of a miracle. I’m really glad your mum is there for emotional support - we all need our mum whatever our age.
I can’t imagine just how difficult it is, especially when you just want him home. How is he coping?
Oh, @Moo I think you are doing absolutely brilliantly.
That horrible conversation must have been horrendous, but at least your Dad and you know why other options could not be pursued.
Travelling back and forth can be so exhausting as I am sure you are all too aware and and when you are as ill and weak as your dad is it would be just too much for him.
How are you holding up you must completely emotionally, physically and practically drained and exhausted.
Please try to look after yourselves, you need all your strength.
I am so glad you and your mum are together for mutual support, it is a time when you both need it, you must both feel so helpless, but never loose help.
I am sure your dad feels the love and comfort you are sending him.
We are here to support you and don’t forget the Blood Cancer Support Line is there if you just need to talk. xx
Hi @Moo, yes he had the BM biopsy but his consultant was on holiday when results came in so we don’t yet know the outcome. However, he was told that he now won’t be going in hospital for round two this week as his platelets have gone from 40 to 30 and he can’t therefore have round two as platelets need to be at least 50. Obviously quite worrying and we’re anxious for what’s to come tomorrow when the consultant rings.
If you saw him you wouldn’t think there was anything wrong with him. His leukaemia was caught at a very early stage so ironically he has never shown any symptoms, but so far 3 rounds of chemo haven’t brought him into remission.
All we can do is take each day as it comes and deal with things a step at a time. I feel a sleepless night coming on.
How are you doing? Just read your update so I know you’ve had a very tough time. Thinking of you . X
Be thinking of you tomorrow x
Hi @CathyG I certainly know what you mean about ‘if you saw him you wouldn’t think there was anything wrong with him’. The same with me and my pet hate is when someone says’ oh, you do look well’ when I am feeling really rough and fatigued.
You have such a good philosophy ‘All we can do is take each day as it comes and deal with things a step at a time.’ so , so true.
Please let us know how the phone call goes tomorrow.
Thanks @Erica , its my partner of 30 years though, not my dad . Can’t imagine living without him, he is my rock. We are trying to get him home tomorrow, with community nursing and they are ready to fast track him to hospice if he cant make the almost daily transfusions. I just can’t believe this is happening. Just 18 months ago, we were both working, doing up a house, and travelling up and down the country. He is crying a lot now and feels really sad to say the least. He has spent over 4 months of the last 6 in hospital, and we just want to get him home. Fingers crossed that can happen tomorrow.
Thanks you for your support. x
Hope it all goes well tomorrow and you get some good news.
Many thanks for your thoughts. Yes tough times now for my partner and me, the treatment he was given hasn’t worked and there is no more they can do to treat the leukeamia . Most of the time he focuses on how hard it is for us rather than him, but he is very tearful and emotional now. Just want to get him home where he can be surrounded by love for however long he has. It has been a very traumatic journey to say the least.
This is just so sad and so difficult for you all @Moo and I can only imagine what you are going through.
I really hope that you manage to get him home as I feel this would be so good for all off you.
Bless him, worrying about you all.
Please let us know how you get on today. I’m keeping everything crossed for you and then all you can do is take it one step at a time.
I hope the medical team have offered your partner some emotional support? If not, I know the hospice will be able to support you all so well. Remember these the support line is there is you need to talk things through.
Sending lots and lots of love X
Absolutely feeling your pain @Moo. There isn’t much anyone can say at this stage that will bring comfort. I suppose advice will be to make use of the palliative care given and just to talk to people closest to you. Any cancer is such a cruel disease in as much as a person can go from being in full health to potentially terminal in a very short space of time. Trying to be strong for yourself, your partner and children is very difficult but I think we do find it ultimately. I’m sure the thoughts and prayers of all the people here are with you and your family at the moment. Xx
We just had the call from the consultant. The last bone marrow biopsy is now showing blasts back up to 16%. This is very tiny in comparison some people’s experience but it does show that the 3 rounds of chemo so far have failed to get my OH into remission.
Consultant is going to speak to another very experienced Haematologist this week about whether it would be appropriate to give another round of (a different) intensive chemo with all of the risks that brings to his generally fit but non the less 72 year old body. With this option there is risk of him dying from infection, still no guarantee of remission but then again, he may go into remission - no one knows at this stage. Alternatively, as he is well and his leukaemia isn’t that fast growing they could keep him on palliative treatment with regular transfusions and some meds that will help to keep the white cells from going into overdrive (that’s the best way I can explain it). From this he could get months or even in some cases a couple of years of being well before the inevitable happens. So, he/we are now between a rock and a hard place as there’s a difficult decision to be made. I mean, what the heck do you do in these circumstances?
Oh @CathyG I have no idea what you do do.
Those conversations are so, so difficult.
We are here to support you whatever happens, look after yourselves.
Oh gosh - it’s a decision none off is would ever want to make! Life can be so unfair at times! As @Erica said, we are here to listen whenever you need us X