My OH was diagnosed with AML in January. He had two cycles of Venetoclax + Azacytadine that didn’t work so he’s now having more aggressive chemo (Daunarubicin + Cytarabine 3+10). He was doing ok but is now feeling very unwell (in hospital currently). I’m home and in a constant state of worry. Consultant said to expect this and while you think you’re prepared, actually knowing he’s poorly and so vulnerable is such a worry. Anyone been through this who can share experiences?
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The feelings of anxiety and worry you have are so normal,
When your OH was at home and with you you could watch him, help and care for him and know what was going on and, OK, you probably had those feelings then too, but when he is in hospital and you are at home you are left with a void and those feelings and helplessness are likely to really take over in that void.
You have both gone through so much since January (plus being in Covid times) I expect it has really taken a toll on you shock wise, emotionally, physically and practically. I find I cope and cope and cope then all the feelings and exhaustion set in.
My mind also goes to practicalities and also the ‘what if’s’ etc.
It is an opportunity to catch up on tasks that you put on hold since January.
Be kind to yourself, have a rest and perhaps a soak in a bubbly bath and try to accept your feelings.
Are you in contact with your husband at all?
I am interested in hearing more about you.
Hi @CathyG and welcome to the forum. I think it’s so hard being the one watch your loved one go through treatment, I know my husband found it extremely difficult. I think @Erica gave great advice, especially about being kind to yourself. This is something we so easily forget but is the thing that’s the most important - both as the carer and the patient. This information booklet is really useful, along with the support line; Supporting someone with blood cancer: your feelings | Blood Cancer UK
Please keep sharing. We are all here to support you. Sending special wishes to you and your other half X
Thank you Erica, your comments perfectly sum up about the coping, coping and coping and then crumbling. That’s what’s happened to me this week. It didn’t help that I had a minor health problem of my own (nothing serious but had to have 2 small uncomfortable procedures ), and that’s when it hit me. Flood gates well and truly open. I do try to look after myself and did the bubbly bath thing last night
I find I worry constantly, too much and too irrationally.
I am in contact with OH, we Skype two or 3 times a day and can message in between so I’m usually better when I’ve seen him and know he’s ok.
Thank you for your reply. It always helps to hear from others in similar circs. Xx
Thanks Nicola, I’ve had a look at the info on the website and the common sense side of me is very good at that, but this week the emotions took over and all rationality went out the window. I think just offloading and putting the words down did help, so thank you for you’re reply. I’ll keep on keeping on. Xx
Yep - loosing that common sense side of things is something that resonates with me to. Just have to let it all out sometimes don’t we and then breathe. Bottling it all up doesn’t help. You take care and hope you feel a little better today X
Hi @CathyG ad @Nichola75, I really agree sometimes it just all comes spilling out and I did not realise how much I had been bottling it up.
I have never cried so much as since diagnosis, I am far more emotional now.
But wow don’t I feel better for it.
Well, here we are today. My OH was supposed to go into hospital for a further round of intensive chemotherapy but after consultation with the Christie Hospital his haematologist has decided not to offer any further treatment. This, due to his age (72) and that he’s had 3 rounds of chemo which have failed to put him into remission. Even if he did go into remission he would need a stem cell transplant and he is considered too old for that as it’s too brutal at his age. There may be early phase trials that come up that he could be a part of and he’ll be notified if he’s suitable for any.
Obviously we are both devastated as his time will now be measured in months, although we don’t know how many.
He is still extremely well (how ironic) and his doctor feels he should use this time to enjoy life rather than having chemotherapy which could be risky or even fatal.
He will be given supportive treatment instead. Today we’ve had to tell our children and the wider family and that was really hard. I may decide to also speak to a counsellor as I’m afraid of what to come and need some support with that.
Would be glad to hear of anyone who is going through this - insights and stuff.
I wish I had some words of wonder, comfort or just sense but I don’t. I just wanted to reach out to tell you and hubby and the wider family you have are being thought of warmly. As another wife and carer, I couldn’t pass this by. I haven’t walked in your exact shoes but, as a family, we initially faced a time frame of weeks and I’ll never forget those feelings and the sadness that was, and remains, indescribable. I should say that we count ourselves so blessed that we still have him. Please look after yourself amidst it all and continue to talk about how you both want this time to be. With every good wish for all of it x
Hi @CathyG. I’m so sad to read this post. I can’t imagine how you are all feeling but do know how hard those conversations must have been today. You must both be so upset and exhausted.
It sounds like you are getting good support from the medical team and have lots of family and friends to support you as well.
I think counselling will be really useful. Has your husbands team mentioned anything about this. If not give the support line a call and Macmillan are great to.
Sending you as much love as I can. Please keep sharing. We are here for you whenever you need us X
Oh, @CathyG, I just cannot imagine how you are both feeling and thinking.
Although obviously devastated you must be drained having had to tell your children and wider family.
@Nichola75 has given you the thought of Macmillan for support and some counselling.
No, I am not in your position, but for me it would be the not knowing and fear of the future.
We are all here to support you and I hope that others can be of more help than me.
You are probably both in shock and exhausted, so be kind to and look after yourselves.
Thank you all @Erica @Nichola75 @judesadventures @
I think just being able to share here has helped because you know you’re sharing with people who know how it is (by and large). I, more than himself have been very fragile these last two days. We told our children (that was so hard) but they are very supportive of one another, and us.
The worst thing today is receiving consoling messages from family and friends that we’ve told. Each one comes with a load of tears (mostly from me). Normally I’m quite emotionally strong but my usual standards have slipped. I’m sure I’ll begin to settle in the next few days. I do need to speak to one of the helplines (MacMillan might be best at present) and will do that this week.
We’re currently trying to book a holiday but just got the OH passport out and under the new rules he’d have to renew it - oh the irony!!
I am finding though, that trying to deal with other peoples grief is hard. I’m having enough of a time of it myself but all the while trying to comfort others - not just close family and friends but acquaintances too. A close friend of mine passed away in March. When she was going through treatment she expressly asked that no one contact her, now I can see why.
Well we really don’t have any option do we. We can sit in a dark room and cry and rage or we can get out in this lovely sunshine and deal with it. I’ll try the latter. Thank you again for your kind words. Xx
So many things on this post that are so hard!!
What resonates with me the most is how you are trying to comfort everybody else when all I want to do is give you a big hug!
I know my husband and myself found the initial weeks difficult to, for the same reasons. I was quite strong at the time, put on a brave face and told everybody I would be ok. That’s ok to get through for a while but it takes it toll. I’m only saying that because yes, you have to get on with things, but alongside that, and not to the detriment of your own well-being. You need to be aware of your needs and be kind to yourself, otherwise it will all become to much.
Quite a few people I have read posts from have also found this so hard and if you search on the forum you’ll find conversations that may be of great support to you.
I think the Blood Cancer UK support line, and MacMillan are really great. I’ve used both and recommend giving them a call.
The passport situation must be really frustrating! Where were you planning on going? Could you do a staycation?
How is your husband been coping with it all the last few days?
Sending you extra special wishes and lots of love. Please take care of yourself and keep sharing. We are always here X
Hi @CathyG I was so stuck by your words ‘Normally I’m quite emotionally strong but my usual standards have slipped’, I would actually say the opposite that it it is so much healthier to let your emotions out than shove them back down and do what I do and shove my well worn ‘I’m fine’ mask on and cause myself future health problems or a real meltdown. For me in childhood showing emotions were not what a good little girl did.
It is so hard dealing with other people and their consoling words and emotions you must be completely worn out and exhausted.
A holiday, or as @Nichola75 suggests a staycation, sounds wonderful to me.
Typical about your OH’s passport, but perhaps renew it and laugh about it.
Yes, @CathyG both of you get out into this sunshine and as his doctor said (in different words) and enjoy every day.
Please let us know your holiday plans when you know them.
Also please let us know if you pursue counselling, I have in the past and it has helped me.
Look after yourselves
@Erica @Nichola75 vacation would be a cruise but sailing from the UK so no flying. I’m working on it. His passport doesn’t actually run out until next July but the start date was from Jan 2012. I’ll take advice if necessary.
Sorry, I was being a bit tongue in cheek when I said ‘my usual standards have slipped’. I’m not a naturally crying person but have cried much these last few days. I’m trying to be kind to myself and will make time to rest etc.
We’re retired obviously so there’s no pressure to go out to work or anything and we don’t have money problems, our lovely family are relatively close by and we have amazing friends who will all look after us.
I’m just debating which service to ring - MacMillan or Blood Cancer?
I have worries around the ‘end game’ so to speak and I need to know my precious man is not going to end his days on a trolley in A&E surrounded by,…… well you get my drift. I want to know what to expect, what support we’ll get at home etc. I’ll do that tomorrow then I don’t need to keep cogitating on it. Xx
Hi @CathyG since diagnosis I am far more emotional and it is so unpredictable too.
Why not ring both services.
Blood Cancer UK have more information on individual blood cancers.
Macmillan might be able to offer short term counselling and advice on ‘end game’ support.
Yes - I agree, try both X
I haven’t posted for a while. We’ve had some challenges since my OH was told in September that he wasn’t having any further chemo. The day after he started coughing - he had caught covid. Over the following 2 weeks he deteriorated and for four days we thought we were going to lose him but incredibly and against all the odds he got better (thanks to an experienced covid ward doctor who knew exactly what to do and when to do it).
Well, since then and still having to come to terms with what’s to come in the next few months and having met the Palliative Care Nurse, my OH got the call that there’s a drug trial and as a patient who hasn’t responded to chemo he could be put forward. So on Tuesday he’s off to the Christie Hospital Manchester to start this trial. Whilst there are no guarantees, there is now a little bit of hope. The Doctor running the trial says so far, the drug is showing encouraging responses. We wait with bated breath.
Hi @CathyG. It’s lovely to hear from you. Wow, that’s such a lot to deal with in a short space of time. It must have been a roller coaster of emotions. I’m so glad he has recovered from Covid - how wonderful are the NHS!
The trial sounds like it’s given you all a bit of hope that there is something else to try. How are you both feeling about it all? I can imagine it’s still a very challenging time X
Hi @CathyG thanks so much for posting what a time you have both been going through, what a rollercoaster of thoughts and emotions you have both been through.
I hear that the Christie is a brilliant hospital and please let us know how the drug trial goes?
Look after yourselves and please keep posting.