[lyshz03Participant]

Hi,

It simply isn’t good enough though is it although I have to say our doctors are really great but on this occasion they have failed to take this seriously! I can’t understand why the hospital can’t carry out the vaccination programme they could do it when it was on the news headlines for Covid but apparently not now. All I’ll say is please take care & make sure you do get the Covid one as soon as you can because it is very much still about & the doctor said to my husband that unfortunately because of his non immunity it’s affected him like the original virus did he’s still so poorly despite all the medication anti viral, steroids, antibiotics & maybe if he’d managed to get the vaccine he wouldn’t be in this situation.

All the best & good luck with your SCT.

[lyshz03Participant]

Hi again,

Unfortunately before my husband could start his vaccination programme he contracted Covid & is currently in hospital on oxygen & very poorly. He had tried to keep himself isolated but unfortunately caught it from a family member who didn’t know he had it. We had contacted our doctors twice but were told they didn’t have the vaccine so he didn’t get it in time. All I can say is please take any illness very seriously as it can cause serious problems especially after transplant you really need to be careful & if you do get poorly act quickly because things can change quite quickly he is 5 months post transplant & was due his last chemo treatment before starting his maintenance & everything has now stopped until he recovers.

Thank you for responding to my question & hopefully things will improve for us soon 🙏

[lyshz03Participant]

Hi Daz,

Yes I’m sure you’re right it’s just such a difficult thing to adjust to hopefully things will get better again soon. Thanks for responding 😊

All the best Lynn

[lyshz03Participant]

Hi

Well the SCT is all over & he’s now on 2 months consolidation treatment, getting over the first week which has been hard. Eventually he started feeling almost normal after having his SCT in January & now he’s back to treatment it seems such a shame because he was feeling so good & this week he’s felt ill again & his walking has been affected I’m hoping that as it’s only for 8 weeks he will recover again before going onto maintenance treatment. Will we get our lives back to some kind of normal after this has anyone else felt that maybe the consolidation treatment makes things worse or is it really worth it? I’d be very grateful for any response.

Many thanks,
Lynn

[lyshz03Participant]

Hi,

Just to let you know G was readmitted last Sunday had UTI & fever was really poorly for next 5 days with diarrhoea to boot! Just come home today feeling so much better he actually had a sandwich & a pasty today which in itself is a miracle because he hasn’t eaten properly since his SCT, he’s lost loads of weight, so now we’re hoping he’s over the worst & will continue improving. Good luck to anyone who is waiting for a STC I hope your journey goes well it’s not easy but I’m sure it’s worth it.

Lynn

[lyshz03Participant]

Hi Daz,

Thanks for your replies I’m certainly going to phone his stem cell nurse in the morning he had quite a disturbed night doesn’t seem too bad this morning temperature is just above normal I’ll see what today brings & take it from there it’s a very worrying time though, I guess his age 69 doesn’t help it reminds me of when he came out of hospital last year after his operation he was so bad took months to get back to some kind of normal & now it feels like he’s taken a step backwards but as you say it will be worth it!

Many thanks,
Lynn

[lyshz03Participant]

Thanks Daz it’s just he’s so poorly can hardly get out of bed I just wondered if it was normal procedure to go out so soon.

Thanks
Lynn

[lyshz03Participant]

Hi Daz,

Can I ask a question G was discharged Thursday of this week & has been asked to attend clinic on Monday to have blood tests & have his line checked. I am concerned because I thought isolation meant just that not having to go out especially to a hotbed of viruses so soon after his SCT did you have to attend clinic or did a nurse come to your home? I’d be grateful for any replies as I am very worried about his wellbeing.

Many thanks,
Lynn

[lyshz03Participant]

Thanks Daz I’ll definitely let him go at his own pace & thanks for your help & advice. I think I can now see a light at the end of tunnel

Regards,
Lynn

[lyshz03Participant]

Hi All,

Just to let you know that my husband might be coming home tomorrow. His SCT went as well as expected although he’s been pretty poorly this last week not really eating or drinking had to have numerous drips, he’s had bad diarrhoea & nausea but things seem to be slowing down. I was quite shocked today when he said he was possibly coming home tomorrow I didn’t think he was well enough but I’m assured nurses will be coming in to administer antibiotics & check his bloods I’ll know more tomorrow I’m sure. I think he will recover better at home I can make what he fancies & he won’t have to face that awful hospital food! & he’ll be able to have a decent shower. So now it’s onwards & upwards slowly slowly.

Lynn

[lyshz03Participant]

Hi Daz,

Thanks for your reply. As I said he had his chemo last Wednesday stem cells Thursday & Friday & was feeling great but as you know when the chemo kicks in things aren’t so good. He started feeling rough Sunday & yesterday was in bed all day not really wanting to eat still feeling crap today but hopefully it’ll pass soon as it’s all been expected. This was his only chance of stem cell as he is 69 so we had to give it a go & hopefully as you & others say it will be worth it as it does improve quality of life. I will keep you updated as I think this forum is very helpful for everyone involved with this disease so that we know we are not alone

Lynn

[lyshz03Participant]

Hi Everyone,

Well after a bit more of a delay he is in hospital & has had his chemo today so hopefully this is the start of a new beginning. I know we have a long road to recovery but now he’s taken the first steps we can look forward to some form of normality soon. He is feeling really well at the moment & I’m hoping the treatment isn’t too bad but I’ll keep you all posted. Thanks again for your support it’s so helpful & appreciated.

Regards,
Lynn

[lyshz03Participant]

Thank you for responding I’m grateful that you can offer such hope for the future. Just got to wait now as my husband has RSV so transplant delayed till he gets over it, we will get there eventually!

Thanks,
Lynn

[lyshz03Participant]

Hello Marion,

Thank you for your response & yes it does give me hope that there will be life at the end of the SCT tunnel we are hoping for a better year getting about more & going on holiday. Things have been so much better recently his mobility has improved greatly so we’re hoping that this carries on although with the surgery he’s had we can’t expect things to be 100% again. When I read other posts though I see that it’s not an easy road ahead in the short term but hopefully it will give us many years of a better quality of life. So we’re waiting for the phone call today & hopefully it’s onwards & upwards.

Many thanks again & I wish you & your husband a long & happy future.

Lynn xx

[lyshz03Participant]

Hi,

Just to let you know my husband hopefully will be having his stem cell transplant tomorrow after delays due to him having melanoma & having to have that treated, he just seems so unlucky to say the least. He had to have a respiratory swab test today because he’s got a cold & they want to make sure he’s ok for the treatment , so as long as there’s a bed & his swab results are ok he’ll be going in. I can’t say I’m looking forward to his treatment because he has been so well in the last few months & we know that the stem cell transplant will knock him about but I’m hoping his remission will be worth it, I’ll keep you posted.

Lyshz x

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