I am pleased to say that we didn’t have to make an emergency return to the hospital over the weekend! I almost held my breath the entire time from other returns during neutropenic periods.
We were able to return again to the hospital yesterday morning for blood checks. Given we left after 5pm on Friday, it felt like we’d not really been away but his RBC was looking good, and he had a bag of platelets. If he can stay out of trouble today, then we go back tomorrow again, probably for 2 bags.
The kids are really enjoying having him home, especially since we know he will be away for longer with transplant next month.
I feel mentally fatigued but also good but also weary and just all the things. I know that sounds bizarre but I am sure that anyone reading this will hopefully know just what I mean. I am taking the day off today to just rest and do nothing.
I can just imagine you holding your breath all weekend @Toadmum
I can remember when my husband was unwell I used to peer at him, or peak out of one eye and really annoying him. OK, I probably was not very subtle!!
Yes, your feelings are far too familiar. I believe I keep dealing with the thoughts and practicalities, I am good at that, and then the fatigue, weariness and mixture of emotions hit me for 6.
Yes, take the day off today, however I am not so good at just doing nothing.
Enjoy your day.
So he’s back in hospital as of last night, with a raised temp so some kind of infection. Who knows at this point but we’ve managed 7 lovely days at home and that is a record for us whilst neutropenic so I have to celebrate that.
Still waiting on cultures but he’s in the best place to recover. It was a late night visit to the hospital - why it always has to be the case, I just don’t know.
Very tired today after the trip. Just demolished a pizza and will go to bed soon too.
Yes, 7 lovely days is a record for your husband @Toadmum, but I am not surprised you are exhausted after the late night visit back to the hospital.
My tiredness and exhaustion would be not just the practical and physical side, but the emotional side
A pizza and early night sounds the best medicine to me.
Be ever so kind to yourself
We’ve had a really tough ten days over here. Unbelievable really given that this was ‘just’ bridging chemo.
We had 5 days of infection fighting at his usual hospital; nothing worse than any of his other infections. They had to move him to our larger regional hospital on Monday due to an inconclusive echo scan where they were concerned that he may have bacteria sat on his heart. Fast forward to a horrendous five days of experience, exacerbated by the strike this week. I won’t go into details here because I would hate to read it, and I also don’t want to relive it but he is back in his normal hospital as of this afternoon, doing well, although with some unknowns about what this means for us for stem cell, if it impacts at all or not. Keeping fingers crossed but also just thankful that he is doing OK.
I have complained to PALs because some of what we experienced impacted other patients who did not have family members present to advocate for them.
My entire week has been at this hospital trying to get answers, pushing for scans and for clarity on what has to happen / what was going on. I’ve missed the whole week of work unexpectedly and had to rely on a lot of people to support, pick up the pieces at home.
Trying to count my blessings here:
he is back and comfortable and continuing to improve, with his infection markers dropping each day
we’ve made it through the week and I can rest this weekend and slowly get things back on track
friends and family who have offered help, and made it impossible for me to do anything but accept.
Another 7 days and neutropenic period navigated. He should be non neutropenic on Sunday or Monday which will be enormously helpful in many ways.
Oh @Toadmum what a horrible time you have all gone through. I really feel for you all.
I know I find it difficult to ask for and accept help, but family and friends are so priceless.
Yes, really be kind to yourself, apart from the practical side my emotions and thoughts exhaust me.
Sorry to hear you have had a challenging time. It is exhausting at times huh?
Glad to hear things are a little more settled. Let us hope you get some answers/plans as to what’s next as that can help you move on from the horrible times.
It is indeed, but we keep going. We’re doing good, ish here. His infection has finally been resolved although he has to stay on antibiotics for another week which is no big deal in the grand scheme of things.
Unfortunately, we’ve had to delay stem cell transplant slightly due to the infection and timings. Also, whilst the leukeamia has not come back, they can see a tiny amount of one of his mutations still in the MRD test, so they want to try him on some additional chemo during this time to see if we can get rid of the mutation before transplant.
He’s a bit frustrated, a bit tired and fed up after last week and we were just psyching ourself up for the next sprint only to realise we have another step to get through first. Mentally I feel very weary but I think I just need a couple of days to reset my own mind and psych myself up for the new plan.
The good news also is that he can come home soon and we will just go in daily for the chemo when required, and stem cell is still on the table but it feels very overwhelming over this last week or two.
Oh @Toadmum what an emotional and practical rollercoaster you have both gone through and I bet you are both are a very frustrated, extremely tired and completely fed up.
I bet you are very, very weary, you are also keeping all the plates spinning behind the scenes.
It is a long old overwhelming winding road.
We are here for you to say how it really is for you.
Sending loads of virtual hugs xx
So husband is back home and counts have risen which is excellent. He is finishing up the course of antibiotics for the infection and we are still on for stem cell but need to complete this and try to get rid of a mutation that they can see in his marrow. He’s starting chemo again on Monday - the venetoclax and acizitidine (I think…) which they hope might target the mutation and try to get rid of it before transplant to encourage better success rates. If anyone has any experience of this, we would love to hear about it.
Other than this, all OK here! I am just trying to allow myself the mental space to get with the new plan and timeframes.
I think @Toadmum as others say it is just taking it a day or an hour at a time to make it more manageable to give yourself more mental, emotional, physical and practical headspace.
Plans and timeframes rarely go to plan.
Be kind to yourselves and look after yourselves and keep posting
Not too much news over here - blood counts rising nicely and we are enjoying having him home.
A mixture of mundane life activities, which I feel so appreciative of after this Acute myeloid leukaemia (AML) experience, and hospital appointments to check bloods and related. He has started his new chemo cycle to keep him in remission and try to target this one last mutation so that feels like a good milestone.
All OK with me, just trying to take it one day at a time. Hope everyone is doing well. Hope @Fifimac and @Ledgell@SarahMum@Suenew1967@Erica are all having a good month so far. Lots of love & well wishes to you all.
Thanks for update and glad you are having a bit of a quiet time at home in your new normal. Good that bloods are rising - isn’t it amazing what a body can do despite all that is happening and being thrown at it? Your husband sounds a strong individual with a special wife to support him . Enjoy your time at home.
We are good here thanks. I picked up Danae from train station this afternoon. She has had a wonderful week with her uni friends who have all made a fuss of her. She has officially enrolled for her 3rd year at uni and will return in September.
It’s weird as I have been feeling ‘funny’ for some time now. In some ways I am struggling more now than when we were in the thick of it? Maybe it is getting used to living life not fuelled by adrenaline and uncertainty as to what the next hour will bring. I still feel a deep rooted fear that sits with me - however hard I try to ignore it and focus on all the positives.
I hope your children are doing okay too? I bet they are loving having Dad home? I think of you often. Keep being kind to yourself and enjoying your time at home. May every day bring more strength.
Hi @SarahMum and Danae. I am so glad that you had a wonderful week with your Uni friends and that you have enrolled for your 3rd year in September Danae.
I have been thinking about you @SarahMum, you and Danae are the Dynamic Duo and have had the privilege to share this unique bond during Danae’s ‘cancer journey’ and then suddenly Danae is away for a week. It must have felt so weird.
If you are anything like me I can be dynamic in the thick of it, but then when I have a void I feel unwell and I am left with that deep rooted fear in the pit of my stomach. Perhaps just give yourself time and be kind to yourself, I think your feelings are very natural, please keep posting how you are both doing and feelings.
Sending loads of hugs to you both
The body is SO amazing! I totally get what you mean about the adrenaline, it definitely carried us for quite a considerable period!
Thanks for your lovely note, it means a lot to be thought of! The kids are doing really well & quite settled and in the flow of things now. I’m also doing good and feeling much more mentally settled again than I did a few weeks after our heart infection / change of transplant scenario. However I have caught a sickness bug off the kids last week and then a bad cough this week so I can tell I’m quite run down. Trying to shake those bits off & looking forward to some time off for Easter. The good thing is that husband is still at home. He’s tolerated the new chemo regime very well and we finished the injections and are now on the daily tablet. Thankfully it also hasn’t hammered his counts like some of the other chemos did. His bloods were looking so good that we haven’t had to visit the hospital since Tuesday and will go back on Monday which has been SO nice. It’s incredible how much time a simple hospital visit / check takes out of the day what with the waiting, checks, transfusions etc.
No other news here but we are quite steady which is great. We do another cycle of this same regime in April / early May (not sure when this cycle ends) and we understand transplant is looking like early June but trying not to borrow worries from tomorrow and just go a day at a time.
Lots of love to everyone and have a wonderful weekend.
Yes, @Toadmum I expect you are really run down you have just kept going and then often when you feel you can relax slightly it all catches up on you.
It takes quite a while to build back up too.
I always think a hospital visit takes care of a day and wipes me out.
Yep, steady is great.
I had never heard the saying ’ trying not to borrow worries from tomorrow’, it’s absolutely
brilliant and so true, thank you.
I hope you can all enjoy family time together over Easter together and really look after yourselves, especially you.
Another day, another hospital check. Bloods are looking good. Somehow still not Neutropenic which has been a really nice relief after the last four chemos but we are going back again Friday as usual to see what they are doing and make sure all is well. I have actually grown very accustomed to visiting the hospital three times a week and think I will probably feel strange when that stops.
No other news apart from the children’s Easter holidays start soon. We were expecting for his transplant to have been done on 26th March so under our new timings, trying to be positive that he gets to be around for Easter if he can stay well.
We have new timing of very early June for transplant because we have to finish this first cycle of new chemo, recover counts and do another cycle which should lead us nicely into late May.
Hi @Toadmum thanks for the update, let’s hope you can all spend Easter together.
I believe variation and delays are par for the course, the best laid plans and all that.
Look after yourselves and I hope you all have a restful time.
We did have a lovely restful time and managed some slow, outdoor activities with the kids in the mornings which was wonderful. He can’t walk as far as he could / we can at the moment so we have adapted our plans to suit as necessary and it has been most enjoyable.
I have also been swimming and up to some nice things with the kids for the holidays.
As always, I do have an update and I’m posting it in transparency of our rollercoaster journey. It was his birthday yesterday and we did have a lovely day. He then got a temperature and we spent the night in A&E receiving antibiotics. He is in hospital today resting and receiving more antibiotics. I am feeling a bit guilty, although I know I don’t need to, because he caught the cough from me.
On the plus side, we’ve got so slick at monitoring for the temperatures but I had gotten really comfortable with him being back home over the last few weeks too so it was hard to take him back.
It is really lovely to have the extra light in the evening. The kids and I went to the park and for a walk and it was really nice.
. Enjoy your time at home.