[gcParticipant]

Hi
A bit fed up. I’ve caught Covid again. It does seem rife in my neck of the woods. Hospital have been great- phoned in the morning and by lunchtime my nurse had called back to say a prescription for Paxlovid was ready to be collected. Husband duly made the round trip. Despite other information this is not mild or a”summer cold” but has floored me so dread to think what I would be like minus the (horrible) anti viral meds.
No idea where I caught it as I try and be as careful as possible without being a hermit. I test myself frequently, take my temperature daily and avoid crowds.
I had my stem cell July last year and have been through the revaccination programme.
Just a wee warning- Covid hasnt gone away. Anyone else had it recently? Its hard to find up to date info.

[ree2112Participant]

I caught covid last week. It just felt like a bad cold. My husband nagged at me to get in touch with my CNS, to no avail so I reported it to my consultant’s secretary. Within an hour 1 of the CNS team contacted me and referred me to having a triage call for some antiviral meds. This happened the next morning and that afternoon I got the medication.
I much prefer the Covid than the meds they made me so poorly.
It was my first time in getting it.
I had my SCT back in April last year and have had my injections too.
A colleague warned me it was doing the rounds again.
Hope you are feeling a little better x

[anne1Participant]

I caught covid just over a fortnight ago. I was given the anti- viral Paxlovid. Have to say I was also floored with it so not sure how much of it was to do with the virus or the meds. I had no choice but to rest, rest, rest as wasn’t up to doing anything. I’m still a bit congested with a cough. I’m not sure where I caught it from either as I avoid crowds, unventilated places and people who are knowingly unwell, but I do know it’s rife. I live in Scotland and PHS Scotland’s website has a covid dashboard with up to date statistics. It seems we’re over the peak but numbers are still fairly high. I didn’t get my spring booster as I had to have my stem cell harvest and dr didn’t want any medical interventions interfering with the harvesting. (I’d be interested to know how you’re feeling having had your SCT last year and are you back to a normal(ish) life.)
Hope you’re feeling better.
Annex

[gcParticipant]

Thanks for your replies. Its always good to know you are not alone.
As far as post SCT goes then life is different. I havent gone back to “normal” and accepted that isnt going to happen. I am in the high risk group and didnt get a complete response so still some myeloma present. I am in the Radar trial so on a maintenance programme which (touch wood) is keeping things at bay. I have fractures in my back so back pain is a pest and my mobility is not as I would like. The fatigue drives me mad.
Having said that I lead a pretty full life, and enjoy the things I do. I am still not good at pacing myself so frequently ” overdo” things. I’ve taken up new hobbies and now appreciate the area I live in so happy taking short day trips. Thoroughly enjoy a coffee and cake with friends! I enjoy the little things.
Anne- I’m in Scotland too. I do hope the peak has passed as I said earlier Covid seems rife- and that’s from people who test!

[anne1Participant]

Hi GC

Hope you’re feeling better today and Paxlovid is keeping covid at bay.

Thank you for replying about SCT, especially when you’ve got a bout of covid.

Yes, I agree about enjoying the little things because they add up to big things!

I also have fractures in my back which limits my mobility too. Have you noticed any improvements? The thought of living with this pain and weakness is devastating. I’m hoping it becomes more bearable as the fractures heal.

Is your fatigue worse since SCT? What do drs say about it? I’ve heard mixed reports of SCTs and can’t deny I’m apprehensive. If you also live in Scotland, I wonder if you had your SCT at QEUH, or if you’re on the East coast, the Edinburgh hospital which I believe is the Western. Think there are only the two transplant hospitals in Scotland.

Take care and remember you’ll soon be enjoying coffee and cake soon!

Annex

[gcParticipant]

Hi anne
I had my cells harvested at Edinburgh Royal then the other bit when you stay in hospital and the cells are returned was at Ninewells (Dundee). I’m under the care of the haemotology team there- no complaints they are wonderful. I also go to a myeloma support group at Maggie’s in the grounds of the hospital.

My mobility is definitely much better after SCT – I dont know what I expected. My pain levels fluctuate but I am reluctant to up the dose of the medication as it tends to make me dozy! That’s my choice but I know there are options available. I still walk with a stick which doesnt bother me now. My husband bought me walking poles and they’re great for walks along the seafront- definitely help my posture.

The fatigue too is better post SCT. I still get a day here or there when my energy just goes. It’s often after a treatment day. I’ve got much better at resting if I need to. Initially I tried to fight the fatigue but have learned that’s not a good idea. As I said earlier I’m not good at pacing myself! I like to see a full diary- friends and family are great however and accept that sometimes I have to cancel- doesnt happen often!!!!

I hope some of this helps. I knew my chances of having a complete remission after SCT were slim but life is still definitely better.

You take care.

[anne1Participant]

Hi gc

Thanks for your reply. I’m glad you have benefited from SCT and life is better. It’s reassuring to hear you’ve improved. I know what you mean about being reluctant to take pain relief meds. Walking poles sound a great idea as walking along the seafront would mean the world to me!

Thanks again

Anne x

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