Wow @Toadmum it sure is all go for you all.
Thank goodness for your husbands amazing medical team.
Thinking of you moving and yes, when you move in slowly settle to get sorted.
When we moved my husband kept going on at my son and I that we needed to sort our things out as we were downsizing and moving to a flat and we would never be ready on time.
We were, he wasn’t and 11 years later he is still sorting out all the paperwork he brought with him.
Be very kind to yourselves and take it steady
2 Likes
Ooh good luck with the final packing and the move. I love the feeling of moving into a new place…finding where to put everything. The packing up beforehand not so much. @Erica your comment about your husband’s paperwork made me laugh. My dad has SO much paperwork. And he’s been in this house 40 years. He’s actually been trying to go through some of it and bin some of it. I think for my benefit when he’s not here to do it.
We’re plodding along here. Dad’s swollen nose is still giving him problems but it does seem to be getting very slowly better. He’s been walking a few more steps around the house too. It’s weird as he seems like he is getting better, even though we know he is getting worse. It’s really hard not knowing how much longer he has left other than “months”. We’ve had a hospice nurse allocated to us now and she’s been round to do an assessment, do the forms for a blue badge and attendance allowance and then I need to go through his “Peace Plan” end of life wishes with him for her to log. But he’s been enjoying watching the cricket on TV and mum took him out for a ride to the farm shop the other day.
With me, having been miserable that I didn’t go to the festival I was due to, the fact that I wasn’t there meant I was able to say yes to a spare ticket my friend had for Arsenal’s opening game of the season at the Emirates. So from missing out on one thing I was able to go to something else I love. And I got to briefly catch up with a friend I hadn’t seen for ages. So that was nice too.
I found out this week that a good friend of mine has breast cancer, so that was quite a shock. I’ve known lots of people with cancer, but she is the first who is my age (late 30s). It’s stage 2 and very treatable, but it upset me quite a lot. She did say that having cancer has been easier than her divorce so far though!
My partner is currently working his last festival of the season and then I get him back until Winter Wonderland starts (he manages the teams who run the entrance gates). I really can’t want to see him more. It’s been hard without him. The cat can’t wait to have him back either. Apparently my lap isn’t quite the same.
I love this forum and our checking in with each other even though we are strangers. I keep thinking about how many people are going through this without that support. I hope more people find it.
4 Likes
Hi all, glad to hear of everyone’s progress, That’s me now in for stem cell transplant for Acute myeloid leukaemia (AML), admitted for the start of conditioning therapy on Wednesday and my day 0 is scheduled for next Thursday.
Staff have been great, it’s been good speaking to the clinical team and there also seems to be a lot of support from therapists, physiotherapists, psychologists etc.
I had some really good news shortly before being admitted that my MRD test had turned negative after the fourth round of treatment. Very happy with that as it’s another thing that can help the transplant. There had been some chat about whether to change my pre-transplant chemo plan if this happened, as I’m getting the strongest treatment available to completely shut down my immune system. But the feeling was it would still be worth going with this for the benefit of long term remission and cure.
Chemo response fine so far but I’m told the effect will be greatest later next week, in the days after the new cells come in, as blood counts will be back to rock bottom again.
5 Likes
What a moment for you and so amazing for the MRD negative! I think the strong chemo will only stand you in good stead for a life post transplant which doesn’t include Acute myeloid leukaemia (AML) in it. Take it easy during the transplant. I think my husband felt the worst between day 5-13 ish post transplant. Just enough for his counts to have fallen and to start to feel the effects. He also had very strong chemo which included some kind of chemo immunosuppressant a couple of days post transplant so he mentally felt quite happy to get past that point.
Do you have plenty of things to fill your time? Hope you have got some nice food options to tide you over. We will be thinking of you!
3 Likes
Your partners job sounds fantastic! Do you get to travel with him to events?
Sounds like you are all ticking along really well. I totally agree about the support ~ so nice to be able to chat to people that do have a good idea about what it feels like ~ especially for patients but for family and carers too. Hope you all have a lovely weekend and that both you and your mum get some nice pockets of peace.
3 Likes
Day 59 here post transplant we believe. On our way to the hospital appointment for weekly bloods and consultant appointment. I shall update later with any news!
5 Likes
Thank you very much for your kind message. It’s been really good reading about the experiences of you and your husband, especially since you’re a few steps ahead of me in the process.
I definitely agree with you on the strongest chemo route. I’m here to try to get to a cure and will try anything that helps the chances.
During my previous four rounds I kept active by going out for long walks every morning and continuing to do some work too (on the understanding I would stop on any days I was feeling ill). I found both really beneficial so was a little concerned about now having a month or so in isolation without being able to get out walking. However, the staff have been brilliant at offering alternatives to keep fitness up - a peddle machine, a step and a weight. Will definitely ensure I’m using them regularly. Hopefully be able to keep up some work too - I did a decent amount yesterday.
Hospital food has been fine so far and there seems to be plenty options. But my wife is planning to bring in a few bits of fruit and additional snacks in case I need them - sounds good for the weekend!
3 Likes
Hi @MikeB You wore me out reading your post, perhaps be very kind to yourself and listen to you your body, although I think trying to keep active is important if you can
Personally anything that diverts my mind is good for me.
Yes, I expect you will really miss your fresh air.
I will be thinking of you next week, look after yourself and please do keep in touch when you can
1 Like
Day 62 post transplant today!
Great hospital appointment on Friday ~ bloods looking good and stable. We’re allowed to go 2 whole weeks before our next appointment (all being well). Can you believe it? We are very chuffed. We went away for 1 night to the seaside yesterday which also felt like a pretty cool milestone. It was slow, we spent a lot of time resting but we did it!
Moving on Wednesday which will be good. In that limbo period where half the house is packed up and the other half looks like it’s been trashed / burgled…
Hope everyone else is OK!!
5 Likes
Oh @Toadmum you sure should be very chuffed.
A night away at the seaside sounds wonderful and is unbelievable isn’t it.
Perhaps resting is what you both needed.
You sound so calm about moving, I didn’t cope well when we moved to our flat.
We look forward to hearing from you from your new abode, take it steady and don’t overdo it.
1 Like
Yes he does have a pretty great job! Although it’s often 12 - 17 hour days and being away a lot. But luckily I can go to any event (except Glastonbury) with him.
How did the move go @Toadmum ??
Things with our hour renovation seem to finally progressing. Windows still not due until 23rd September, but we’ve nearly ordered the kitchen, which is exciting.
The only thing I’m worried about is what I do when the house is ready for us to move back in? We are living with mum and dad at the moment, so I’ll be leaving them (or just mum) behind.
My partner and I are off for a walk with a friend and his dog today to celebrate the dog being in remission from Lymphoma. So that’s a nice thing to celebrate.
Hope everyone is well and enjoying the slightly cooler weather. I know I find it easier to sleep now.
1 Like
Radio silence from me due to moving! We moved on Wednesday and boxes finished unloading on Thursday. Turns out we have a lot of stuff! We have mostly unpacked ~ but mainly thanks to my parents in law who have been round every day helping us get organised. Been trying to keep the husband out of it but I know the first few days were very tiring for him! Hoping for a slow day today.
He is feeling good and we were feeling very grateful yesterday morning to not have to do the run up to the hospital as we get a week off between appointments. The only thing to note for him at the moment is a bobbly rash over his face / scalp. He’s trying not to rely on the steroid cream, they aren’t too sure if it’s Graft-versus-host-disease or not. One doctor has said it is and his consultant isn’t sure… guess time will tell!
Think day 68 ish here post transplant
1 Like
Oh, I hope you will all be very healthy and happy in your new home.
Gosh you are doing so well with unpacking.
Sorry to hear about your husband’s bobbly rash, yes, I guess time will tell.
Take it steady all of you.
Hi @Ilona I am glad your renovation is, at last, coming together, but as you say that will bring a decision about moving back in.
That is the first time I am congratulating a dog for being in remission from lymphoma!!
Look after yourselves and please do keep posting
1 Like
Day 74 post transplant today & we had a good visit at the transplant clinic after 2 weeks off. Bloods looking good ~ hard to not read into every movement though and not sure when I’ll be able to get past it. Two weeks ago he had a dip in neutrophils and I spent a day worrying about that. Today, his neutrophils were back up again, as was his Haemaglobin but a dip in platelets.
Chimerism looking good and I suppose a reminder to myself is needed to go one day at a time. We go back in a week to check his skin Graft-versus-host-disease ahead of tapering down his immunosuppressants around day 90.
Hope everyone is doing OK. I am still on annual leave until mid next week which is lovely. It’s the first time I have properly taken any time off since he was diagnosed in late October 2023. I found the first few days of leave after the madness of moving had settled very difficult. I felt very emotional and out of sorts ; I realised work has been some sort of prop for me to keep going mentally and routine wise. Also went from worrying about transplant to worrying about moving to a lot of time to think which I have found hard.
Sending lots of love xx
1 Like
How are you doing? 
1 Like
I know what you mean about work being a prop. For me it’s permitted time to think about something other than dad. And going into the office one day a week is a nice bit of normality.
I’m going to take a week off when we move back into our house, so I expect I’ll go through similar emotions to you. It’s strange not having structure.
Dad’s been reasonably good these last couple of weeks but today he’s been quite bad again. Yesterday he was up and about, walking round the kitchen. When my partner got home from work he exclaimed “Jim! You’re upright!” haha.
But today dad hasn’t been able to get out of bed, can’t stay awake for more than half an hour. I lifted him onto the commode and he passed out. I had to waft some tiger balm under his nose to wake him up. I’m hoping it’s just that he overdid it the day before. He doesn’t have temperature. But we called the hospice and logged the symptoms with them and they’re sending a nurse tomorrow. So we shall see.
As we always say…one day at a time.
4 Likes
I’m doing good thanks. The transplant went ahead last Thursday so I’m now on day 9 post-transplant.
My worst symptom, as with during previous rounds of treatment, has been my mouth and throat, which has been very sore. But I’ve been given strong painkillers which have helped a lot, and so far I’ve managed to keep eating by focusing on soups and softer foods like pasta etc.
So far, other symptoms have not been too bad and I’m doing my best to stay active in the room with some of the fitness equipment they have given me.
I’m trying to not let the mouth and throat pain get me down because I know things will improve once the blood counts start to rise again.
Your comments about work are interesting as, through my treatment, I have been determined to keep doing some work as I feel it is beneficial to me. I’ve been under no pressure to do so but I think the routine and the distraction have really helped, especially in isolation as it has helped me separate the daytime and evening - I can look forward to settling down and reading or watching TV in the evening because I’ve not been doing it all day.
6 Likes
Hi @MikeB thanks for the update and I am so glad that the transplant is over.
The fitness equipment sounds great to me, take it steady, you and your body have been through a lot medically, but also emotionally, physically psychologically and practically.
I am not surprised the throat pain is getting you down, it must be continually with you…
Be kind and look after yourself and please do keep posting
2 Likes
Hi @Ilona it sounds as if your saying ‘one day at a time’ is unfortunately rather apt, but a great philosophy.
I expect it is going to be really difficult for you when your house is ready to move back into.
Please do keep posting how you all are and how it really is for you and look after yourself as well as you are looking after your dad.
2 Likes