Oh @Toadmum it was all going so well too, but as you say it is all part of your rollercoaster.
Yes, the extra light is lovely and isn’t it wonderful to spend time outside.
I love walking too, a brilliant occupation for someone as nosey as I am.
A belated happy birthday to your husband and your swimming sounds just what you needed.
Be kind to yourselves
Well, the Easter holidays come to a close! We started it with a one night stay in A&E followed by a mild viral infection which required 3 nights in hospital. He also finished cycle 1 of 2 of the A&V chemo in readiness for transplant and we got the good news last week that bone marrow aspiration was still clear of leukaemia.
We are just waiting now for new chemo start date and take 2 for our transplant attempt after March cancellations. He has been looking well, much more colour and vitality more quickly than after the previous chemo regimes. It has been nice to have him home excluding the blip at the beginning of the holidays!
I am doing pretty good at the moment. The kids are doing good. Trying to fill my and their cups before we ramp up for transplant.
Take care everyone, lots of love!
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Small update here! We started cycle 6 / cycle 2 of our bonus, unexpected chemo cycles today. What progress when I think back to 200 posts ago and we had just found out he had leukaemia. Really proud of ourselves today - and everyday.
Another round of the same as last month. He is still neutropenic so we spent quite a while at the hospital this morning waiting for consultant approval as it is outside of protocol to start with the neutrophils he has.
We go again tomorrow and Friday, and then Mon-Thurs next week for daily injections which he hates.
Hope that you are having a good day, whenever you come across this post.
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Ahh @Toadmum Thanks for the update. So you should be proud. It is a long and hard battle huh?
Rest well tonight and keep us posted.
Sending love and positive thoughts xx
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Sending love and positive energy
I hope you are doing okay
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Hi @Toadmum I think it is a massive update and you should both be extremely proud of yourselves.
It is interesting when we look back at our original posts, isn’t it !!!.
Look after yourselves and please keep those updates coming.
I hadn’t realised how long it has been since I’ve been on here. What a lot to catch up on. So many ups and downs. I’m always in awe of how resilient you (or we) all are.
My dad has now been off treatment for 7 months. So he had 7 months on 7 months off. The latest blood test results were good but the bone marrow sample wasn’t good enough to really see what was going on there. The doctor said that the bloods show the bone marrow is functioning though.
The thing that is worrying us at the moment is that dad keeps getting a pressure ache up his neck and over his head, which then causes him to get dizzy and have to get down on the floor before falling.
Back in July last year he knocked himself out in the loft (why he thought that at 82 and living with leukaemia he should be up in the loft I don’t know) and he’s convinced it’s something to do with that. So he finally confessed to his consultant about the accident and got a right telling off. It was quite amusing really. Anyway a head scan showed his brain was fine, so now we are waiting for a neck xray and MRI. But that and the fatigue are really getting him down. So keeping fingers crossed they work out what it is.
In a few weeks my partner and I will be moving in with mum and dad while we have work done on our house. So we’ll be able to keep an eye on him.
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Oh @Ilona Great to hear from you again, and the update on your dad.
At 82yrs and he gets told off!!
Good to hear that he is awaiting tests, it must be scary for him.
It will give you some insight when you you are staying with your parents, it will taking some adjustments for all of you.
I hope the works on your house go smoothly.
Look after yourselves, all of you.
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It’s been ages since I updated and I think that’s a good thing because life got in the way.
We finished out the second last round of chemo & had great biopsy results which is the main thing. We are about to come to the end of the last round of chemo & hoping we are heading out of neutropenic territory. He is in hospital with a mild infection again as of Saturday. It does mean we have not managed to avoid a hospital in patient infection related stay during any cycle but perhaps that is to be expected with two school age children!
Next steps for us are transplant which is scheduled in for June & currently going to plan. It has felt like an age since it was delayed in March and hopeful that things will run smoothly but trying to focus only on what I can control.
Hope everyone is doing well?
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Great to hear from you @Toadmum we have missed you but I think you said it all when you say ‘life go it in the way’
Please do keep updating us and take lots of care all of you xx
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Not too much going on here. We had another infection and in patient stay and he’s back home with neutrophils!!! How glorious. We did another biopsy on Friday to check the what’s going on in the marrow and we did all our consenting for transplant and our final appointments.
It’s half term this week so I have taken time off and we are planning to do a few nice things and just bank some family time in anticipation for the next stay in hospital.
How is everyone? Hope you are all doing well too? Wishing there was a bit more sun than there has been - perhaps the nice weather is being saved up for when he is home from transplant…
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Hi @Toadmum when I read your post I was struck by your use of the word ‘We’, it is lovely, and really shows what a tight team you are.
Yes, especially you, but the children as well, are all part of your husbands treatment.
Really all look after yourselves, especially you @Toadmum xxx
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Thanks Erica, do you know, I hadn’t even noticed that but it is quite sweet. I had come back on to drop a quick note on here to reflect that we were off for a bag of platelets & a blood check. Actually, in typical style, his platelets are fine now and it’s blood that he needs.
We have a couple of hours wait now at the hospital but thankfully his mum and dad have taken the kids out bowling etc so they will be quite happy and that’s always my main worry.
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Oh @Toadmum remember to look after yourself as well as you are your family!!
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We are less than one week out to admittance for transplant! What was meant to be 4 months turned into much longer. I am still keeping my fingers crossed until I physically drop him into hospital though.
He is off for a blood transfusion today. His platelets and neutrophils have been recovering very nicely but his blood is still hovering lower. His consultant says his bone marrow is sluggish… Just another worry to add to the list although we did agree that he’s had a lot of strong chemotherapy so it is perhaps not a surprise.
Not sure what that will mean for his recovery post his new cells but trying not to borrow more worries.
He is fitted for his Hickman line and we have a few pre entry Covid tests to do. Other than that, try to make the most of being together as a family before the next 4-6 weeks. We have managed to do some really normal things - bbqs, kids sports events, going for a careful coffee etc, hair cut for him etc. It has felt so good - really hope we have lots more time for these mundane things in the future.
Hope everyone is doing well too.
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Thank you @Erica ! I have been trying to ‘fill my cup’ before the next intensive period for transplant.
I am recognising that I feel quite wobbly and more emotional than I have felt for a while, probably since March. I think it is just the weight of the last 8 months, the thought of transplant, being grateful that we could get here, scared, excited, just all the feelings!
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Yes @Toadmum I am impressed with the way that you are getting to know yourself and understanding what is going on for you.
Yes, an apprehensive, unknown time for you all .
All your feelings sound spot on to me, yes, the weight of the last 8mths accumulates.
Emotions seem to appear when you least expect them, mine have been on high alert for 20 yrs
Your husband is all prepared with his Hickman line and summer haircut.
Perhaps instead of the cup I suggested, go for a pint mug !!!
Thinking about you all loads xx
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Well we are on day 5 of admission for stem cell. Almost finished the pre conditioning chemo & then the cells go in.
He’s doing very well & I feel somewhat relieved that this part of our journey is commencing. We did have a near miss at the beginning where there was no bed available but we involved his consultant and a bed luckily became available.
I have got a cold / hayfever and so I’m not going to visit at the moment which isn’t ideal but can’t be too careful at such a critical time.
Sending lots of love and will probably be posting very frequently again over the next few weeks to document our experience.
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Oh @Toadmum please do post as frequently as you like, you are a very valued part of our forum family.
Yes, I think it is so sensible not to visit, however much you both value your visits, with your symptoms at any time.
I am sending you both lots of love back and frequent posts about how you both doing, please xx
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I was just thinking about you both yesterday and wondering how things were going. Really good to hear things are progressing. I’m keeping everything crossed for you that the rest goes smoothly.
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