Hi @Ilona I am so glad that your dad came home today.
Yes, I expect emotions will be near the surface, I know mine are and they come out of nowhere and I have not gone through what your dad has.
In my experience when something happens at weekends often services are not joined up.
Perhaps if anything medical happens ring your dad’s ward, 111 or 999.
Then on Monday ring your dad’s ward and/.or the hospice to see if you can get joined up services, like carers, going.
Your dad seems to be showing an interest in world events which is good and having him sitting at thee table with you must have felt wonderful.
Yes, I expect he will get exhausted and emotionally easily.
He (and you) have had quite an exhausting day.
Be kind and look after yourselves
I am doing much better. Feel much improved with the antibiotics and haven’t done anything today which was really needed. It felt a hard week last week and the sun & some rest has been nice. I shall rest again tomorrow.
Husband is doing pretty good. He drove today which was the first time since transplant and just a short journey with me in the car. He also managed to cook some food in the bbq. He did also manage to throw up his medications this morning so as always, a bit of a mix but today was day 33 I think.
Kids are good too - not too much news but enjoying their summer break xx
So, So glad you are doing must better today @Toadmum and a couple of firsts for your husband.
Perhaps just watch his throwing up of his meds and let his medical team know when you see them
.I think if the children are enjoying their holidays and happy, that is so important.
I take it the throwing up wasn’t anything to do with his BBQ cooking skills??
This tickled me! Thankfully not - his bbq skills are pretty good although I won’t tell him that! He seems to struggle with nausea in the morning but I’m not sure he’s got the balance on meds / food / sickness meds quite right yet.
Day 35 today ~ not too much to report although he was sick again this morning. Just the once but he’s not quite got the hang of when to take medicines / eat / have his anti sickness medicines. His medical team don’t seem too concerned at this point. He seems these last few days to be a little less fatigued but he is being careful to rest a lot.
Who knows what tomorrow will bring but today was a nice day. Hope everyone is doing OK?
Finding that balance between building up strength and managing fatigue is a learning curve isn’t it? I know dad’s in a different situation to your husband @Toadmum but we are also trying to get that balance right.
We’ve settled into a good routine and have good methods of getting dad from bed to chair to commode. A district nurse came on Sunday…then another on came today because the one on Sunday hadn’t filed the right paperwork to say she had done the visit. But better two than none! Got lots of useful info from then.
Then the hospice called and had a really good long chat with dad, mum and I. They are the first people who have said an actual prognosis timeframe to me and whilst it was exactly what I expected, it was strangely reassuring to hear someone else say it.
We’ve also had multiple calls from the hospital to book in a blood test tomorrow, PICC line insertion and transfusion for Friday and ambulance transport to get him there and back. Oh and a care company phoned too, but we’ve agreed we don’t need the extra care support quite yet.
Then I went to visit the hospice, which was lovely. I went on my own and it’s the first time I’ve cried in a while. I’ve realised I’ve been very much in project management mode with all of this. It’s my way of coping.
Dad’s also had some visitors. A friend came from Copenhagen on Sunday to Thursday and is staying in a local hotel but spending her days here. My parents raised here from when she was a teenager and she’s 60 now, so she’s known them longer than me.
Then another couple of his friends came by today and dropped off a wheelchair, which meant I was able to wheel him into the living room for a bit this evening! Now just need to build a ramp so I can get him into the garden. He was really happy to see another room in the house.
Oh and I did a full days work with 4 meetings and cooked dinner…no wonder I’m knackered. Dad’s had a really good day though, so totally worth it.
Wow, @Ilona I am reeling just reading your post.
In my book I don’t deal with what personally stresses me well and I find I also get fatigue from emotional, medical, physical, psychological and practical issues.
As you say yes, it sure is a never ending learning curve.
You certainly have a hectic time at the moment, it must be so, so much to take in.
I know it is difficult because I am not good at accepting help, but please do just to get a brief breather to just get a bit of goodness into you or just catch up.
Even visitors coming can be tiring for me.
A full days work with 4 meetings and cooking dinner (and the rest!!), yes, no wondered you are knackered, but I know what you mean I bet it was totally worth it, It’s a trade off!!!
Please really do say how it is for you, I find it is a safe space here and the Blood Cancer UK support line is also there on 0808 2080 888
Love to you and all xxx
You are amazing. I can’t imagine how hard it is to walk through some of this and feel the various feelings. It sounds like you’ve made real progress over the last few weeks and it sounds like there is a promising support network in place for you all.
Thank you for sharing this with us all. It is a really important part of life, all of our lives. It’s one of the only things that are guaranteed and as a society, we’d benefit so much in my opinion for more open conversations about what end of life or palliative care looks like.
How is your mum doing? Do you have someone who is taking care of you, whilst you are both supporting your dad?
Day 37 here - not much news today but we did apply for Personal Independent Payments today. I don’t know why we haven’t done it sooner but his ability to manage has significantly been impaired so we have filled in the forms and will see how we go.
He is doing well this week, fatigue seems a little less and he is enjoying watching the Olympics. Still struggling a bit with his stomach and some periodic rashes but overall I think we can’t complain too much at that. He is due to go back to hospital on Friday morning for bloods, dressing change and to see the transplant team.
Everything is good with the kids and conceptually everything is good for me. I am swinging from moments of serenity to feeling incredibly frustrated, and I am doing my best NOT to target that frustration at my husband or the kids. There is just a lot to do to keep everything afloat - the kids, fetching his medicines, food, keeping things clean, work, admin etc. I’m trying to cut myself some slack and be kind to myself but the enormity of this journey and the unknown can be very overwhelming at times!
Thanks so, so much for your post especially the last paragraph ,@Toadmum I bet it will resonate with so many others.
Thank you for your honesty and that is why I think you are an unsung hero, nobody asks how you are, you are piggy in the middle keeping all the plates spinning.
Yes, cut yourself some slack and be ever so kind to yourself.
Day 39 here and bloods are looking fantastic. We hope his Hickman line can come out next week.
However, he’s been suffering with a potential UTI since Wednesday evening. Results haven’t come back from Thursday morning or today but the hospital has given antibiotics so
Hoping this will help over the weekend. The hospital wanted to check his kidney function first which is within range albeit a bit high. He’s been frustrated as it’s just an annoying set back & it’s stressful & sad to watch. Hoping things shall get better each day re the UTI.
Hi @Toadmum yes, unfortunately these annoying set backs do happen.
Let’s hope that the antibiotics do the trick, but it must be stressful and sad to watch as his wife.
Be kind to yourselves over the weekend
We will thanks Erica!
He started the antibiotics yesterday and we will wait to see what comes of the urine samples. There is a potential that he may have the BK virus which can reactivate post transplant. Not sure there is any treatment for it other than to hydrate well & wait for it to pass.
@Ilona how’s everything going? have been thinking of you all
Thank you for checking in x
It feels like so much happens in just a few days. Wednesday was fairly “normal” from what I can remember. Thursday I managed to wheel dad outside to sit in the garden for half an hour, which he loved. Mum then stupidly tried to wheel him back in through the side door, which is really awkward. She got him stuck and nearly dropped him. It was fine in the end but I do wish she had just asked me to do it.
Then Thursday evening I had gone to the hairdressers to get a hair cut for the first time since January (!) when mum messaged to say the hospital called and dad needed to get in for an urgent platelet transfusion as his counts were down to 3. Luckily mum is still able to drive so she drove him in, then after my hair cut I headed over with food and drink supplies and his medication. They were in and out within 4 hours, which I think might be a record!
I don’t know how they’ve done it, but they’ve totally transformed A&E at that hospital (Queens in Romford, Essex). They still have more people coming through than they can cope with so waiting times are still very long, but there’s an air of calm that hasn’t been there until the last few months. You can always see someone in charge and it’s generally just a much more pleasant experience. Really good to see.
Dad had been feeling really weak that day, but when they got back he decided he wanted to walk from the car to his bed. Two steps and he collapsed. Luckily I was just walking towards them and managed to rush in and catch him. When he’s a dead weight there’s no way mum can hold his weight. I think that was a lesson for both of them…I hope.
It’s not actually all the practical things that are exhausting me. It’s the fact that I’m having to do all the thinking for both of them too. I know it’s hard for them…dad obviously has a very good excuse to be not quite with it…but I do wish they would just pause and think before doing things.
Mum has always been one to rush into things or not think about whether something is a good idea first, and I’m finding it hard not to get annoyed with her as it’s putting dad and her at risk. A couple of months ago she tried to help lift a dead tree that had fallen in the road, a bit broke off and she fell back and nearly cracked her skull, really bruised her back. I’m all for keeping active, but a bit of an evaluation of the situation before rushing in would put my mind at ease a bit more.
Sorry…that’s just me needing to get that off my chest I think, so I can be more kind to both of them in person. As my partner said to me…they are going through the worst thing possible and they are just doing their best. So @Toadmum I can totally relate to the trying not to target frustration at loved ones.
Hoping for an event free weekend! Dad has a habit of getting infections on Sundays, so we always hold our breath a bit then. Fingers crossed the antibiotics do their thing for your husband quickly @Toadmum
My partner will be back from working at Wilderness festival on Monday, so we’ll have a bit of extra support for a few days before he’s off again to annother one…he can do all the cooking!
Oh @Ilona and @Toadmum yes, this is the best place to let frustrations and anger go, get it off your chests, it is so natural, I find mine is worse when I am mentally exhausted and physically tired and my inner battery is completely depleted.
Yes, I have to admit sometimes if I feel I cannot confront or resolve it I can be short tempered at others.
I went out for a walk this morning and cleared my head and the fresh air was lovely, I know it is not so easy for either of you.
Yes, my infections always come on a Friday night.
Oh, someone to cook sounds great to me, take full advantage of it.
It is definitely worse when my inner battery is depleted too. Much harder to control emotions then.
I walked into town today to pick up some cat food and a book my boss recommended that she read when her dad was in his final months. It’s called Birds Art Life Death and is about noticing and appreciating the little things when going through times that leave you feeling a little lost. It was written by the author when their dad was ill. So seemed appropriate. Anyway, it wasn’t the prettiest of walks, but it was nice to get out the house.
I hope you’re doing ok too Erica. And that you got through a Friday night without an infection!
This might seem weird to you @Ilona but that is one of the benefits of my diagnosis.
I was a bit materialistic and went through life on autopilot thinking I had my life planned out in front of me before my diagnosis.
Now I do appreciate family, friends local architecture, nature, music etc and all are free.
If you are nosey like me walking is brilliant, even on an ‘unpretty walk’.
My husband, who has not got blood cancer, had a cataract op yesterday, he was big and brave and I did not get an infection, I call that a result.
It takes me a lot longer to build my batteries back up, than to deplete them,
That doesn’t seem weird at all. I know it’s a cliche but watching dad go through his final months/weeks has given me a new perspective. I’ve learnt more about how he lived his life…some things I know I don’t want to repeat with mine and some things I do.
Whilst I’ve never been that materialistic, in many ways I have still got swept up in the social pressures of how you “should” live your life. But my partner and I have said that once this is all over, we are going to do a bit of a re-set and a re-evaluation of our priorities.
Cataract ops really freak me out, so big love to your husband for having that. Sounds like the two of you deserve a little celebration this weekend.