It does for sure. He definitely finds it hard bless him. It’s hard on everyone just in many different ways.
I am doing OK - I had a really nice few days with him at home although we get into a new routine at the moment when he is back of not doing very much and going to sleep early.
I will make extra time for myself this next week whilst he is tucked up having antibiotics. I am a little in limbo waiting for the date / specific plan for stem cell but as with all of this, I can’t control much so I just need to let it flow.
Hope you have had a lovely weekend. Thanks for your attentiveness as always, it means a lot.
Not much to report here - husband still in hospital but feeling much better although still getting the odd temp each day. PICC line has been removed to see if that helps with the infection.
Thankfully, no other news at this time. February is looking busy with lots of visits to the clinic to prepare for stem cell transplant.
Thanks so much @Toadmum for updating us, in my book no news is good news.
Perhaps with February looking busy now is the time to really look after yourselves.
Husband has still got an infection. Initial infection seems to have now been solved but still getting periodic temperatures each day so he’s on additional antibiotics and is still in hospital. The temperatures are under control and not consistent and he is no longer having the rigours etc with them but it’s been a hard week in some ways. I would just love for him to have normal temperatures again so I could worry less. I appreciate the worrying doesn’t help matters, but it is tough.
On the plus side, we’re expecting to do the next bone marrow biopsy in early Feb so we hope that maybe his counts will start to rise soon as he is currently without any neutrophils which doesn’t help on the infection fighting front.
Hi @Toadmum if you find out how not to worry please do let me know!!!
Infections and immune systems have a will of their own I am afraid.
I had a lovely walk today, albeit rather gusty.
Take lots of care.
We seem to have the infection under control although the antibiotics moved to a stronger infusion which was given twice daily for hours.
He is growing white blood cells again which is excellent and it looks like he should not be neutropenic from tomorrow so we’re hopeful for a discharge next week and back to daily visits with bone marrow biopsy too.
I have had a really tough week - work has felt hard, it felt a lot with the continued infection but I have plodded along with lots of breaks in between and I am really happy it’s Friday. I am doing nothing all weekend and just going to allow my mind and body to rest.
Hi @Toadmum I find I can get exhausted by what personally stresses me, emotion things, psychological things, physical thing s and practical things and sometimes it gets all too much.
Just think what you have had and got on your spinning plates and for me it can all come to a head.
Yes, you deserve to give your mind and body a rest this weekend, don’t feel guilty, pamper yourself.
How’re are you tonight ? I hope you’ve had a restful weekend , it’s our minds that do need the rest at times and that’s the hard part … trying to switch off !
Glad to hear your husbands infection is under control , that’s a step forward.
Hope your children are well. It’ll be lovely for them to have Dad home again soon.
You’re so right @Erica , if we knew how to stop worrying we could bottle it and take it on a regular basis.
However it’s just human nature, talking to each other and to people who are going through similar experiences does help. I think that’s why sites like this are a boon.
I’ve had a lovely weekend and I am tucked up in bed watching TV. I won’t lie to you, I could have done with another ten days worth of weekend and resting but I will go easy next week. I did consider last week whether I should pause work as it all felt too much but I think it also offers me a nice piece of normal
in a very stressful situation.
I think we are on day 24 of cycle 3. I can’t believe how far we have come since October when everything got turned upside down. Husband can come home this week as soon as he is not neutropenic so we’re looking at the next day or so. We are hoping he might be able to enjoy a few weeks at home to rest and eat and spend time together before his bridging chemo at the end of February. We are waiting for stem cell transplant but our regional hospital is very busy so it’s a bit of a waiting game for the bed and that looks like mid March at the moment.
Well he is home, as of Monday, and so far still home.
I came down with a nice big cold on Monday - perhaps my body’s way of relaxing after the stress of the last few weeks? I have been hammering vitamin C, paracetamol and Vicks and trying my best to stay away from husband which is hard when we share a bed.
I have made it my next big task to buy a sofa bed for my office so that I have a location to sleep should this happen again, especially after stem cell. He thinks I’m being silly but it is an added weight on my mind so I am just going to sort it and be able to forget about the worry.
Main mission if he can keep out of trouble is to rest, relax, re charge, eat lots, enjoy some family time and get ready for bridging chemo and then stem cell. I’m also hoping he might have a few minutes of energy at some point to hang some picture frames too!
Lots of love and warm regards to everyone.
Any and all guidance and recommendations for preparing for stem cell and recovery etc all very much welcomed as we start to get closer.
@Toadmum bless you, it’s the time of year for colds, I’ve currently got one I’m trying to shake off! I can’t comment on prep for stem cell transplant as I was lucky enough not to need one after Acute myeloid leukaemia (AML). I think a sofa bed sounds like a great idea just in case, all I can say is during my 7 months of treatment I just got infection after infection, wishing you all the very best
Not too much to report here. We had our stem cell consent meeting on Friday. It had been on my mind for a while that it was coming so in a way, a relief to have got past that.
Bloods are looking good, which is great. We’re looking at mid March for admittance for the count down chemotherapy so that means we have to do bridging chemo this week else we will run out of time for count recovery etc before stem cell, which is a shame.
A couple of days left to hopefully enjoy before another in patient stay.
We ended up with an extra two days at home as they needed to do an MRI to check for a prior site of infection to check it was safe to do bridging chemo and that it wouldn’t need attention surgically prior to stem cell. Thankfully all OK and we’re off back in this morning to start the bridging round.
Hopeful that the small delay won’t delay stem cell transplant but equally can’t control it so I don’t know why I waste my breath on it.
We have had SUCH a nice time this last week and a half. So grateful for the time together. Half term starts for us today so relying on family and friends for a bit of extra help, as we have I suppose since this all started.
Oh @Toadmum your use of ‘SUCH’ says it all.
It has taken me a lifetime to be able to ask for and receive help.
Keep the updates coming and enjoy half term.
Yes, be kind to yourself
Bridging chemo finished yesterday which is a nice milestone ticked off. Surprisingly he managed to avoid the associated high fevers and is off home today. He’s not yet neutropenic so we’re keeping fingers crossed for a nice bit of time at home before any infection arises. Of course, hoping for no infections but keeping it real too.
All OK besides this. The kids are on half term this week and having a lovely time. I’m doing alright - feeling periodically overwhelmed and trying to find ways to manage this on a daily basis.
Hi @Toadmum , yep, another milestone ticked off, enjoy your family time together, perhaps feeling periodically overwhelmed is natural, just be kind to yourself and try and just get odd minutes of ‘you’ time.
Be very kind to yourself and keep your post coming.
He has somehow managed to stay home since Wednesday which based on our prior experiences has certainly not always been the case.
We are back in the day unit today and waiting for 2 bags of blood. Apparently there is a blood shortage (very reassuring…) and so the bags can’t be requested until 12.30pm so it looks like a leisurely afternoon here. Platelets not needed yet but will be on Monday if he can stay home over the weekend.
Last day of half term and the kids are having a day out with family. No plans for the weekend apart from kids sport and I am hoping that he can keep out of trouble over the weekend. I said if he’s going to spike a temp, let it be Monday-Friday during business hours… (LOL - why is it never during this time).
Oh @Toadmum do you know I think every urine infection I have ever had has started after my surgery closes on a Friday !!
Fingers crossed your husband and you all make the weekend with mishaps.
Love to you all xx
for a nice bit of time at home before any infection arises. Of course, hoping for no infections but keeping it real too.