[nemoetomnisParticipant]

My partner is due to start the SCT protocol next month. Most of it will be in an outpatient basis at home. However, the reinfusion part of the process requires a 4-week inpatient stay in isolation at a distant hospital.

From what I understand, this time is the highest risk, with my partner’s system severely compromised, needing blood transfusions and rigorous infection control.

What can I do to support during this time?

It seems that I would probably be the greatest infection carrier risk if I were to visit daily. I can’t bring in favourite foods because of the controls on diet the protocol demands.

Being on the end of a Zoom call doesn’t bring practical help.

It’s 4 weeks confined to a single room. I fear for the effect that will have.

What suggestions might you have, please?

[rabbitParticipant]

Hi nemoetomnis,

Looking after your partner could be challenging in its own right while they are at home.

Therefore, when – as you say yourself – it is simply impossible for you to help your partner for weeks, I suggest this: look after yourself!

Take some time, although I obviously don’t know what other commitments you may have (work, family etc) to look after your own health (rest, exercise, eating healthily). Maybe pamper yourself too! Your partner will be in excellent hands.

You deserve it,

Regards
Rabbit

[nemoetomnisParticipant]

I didn’t say it was impossible, and I am appealing for suggestions.

I can’t see what I can usefully do, but maybe others can? Has anyone here been through this process, either as patient or carer, and is able to say what helped?

Is there a positive impact of simply me being present for even a short time every day? Would me being at home and a airplane trip away be hard to take?

• This reply was modified 3 months ago by  nemoetomnis.

[labladyParticipant]

Hi nemoetomnis
Like you we are due to begin the SCT protocol soon. As I understand it you can visit but you will be suitably gowned, masked and gloved to do it. Have a look at the info pack for carers of myeloma it can be downloaded from the website.hth

[labladyParticipant]

Hi just checking in to see how it’s going?
We’re due to start in a fortnight but completely opposite info to you no isolation whatsoever!!!
5 days in SCT centre then transfer to local hospital for checks one day, then home for 5 days the back to local hospital for 2-3wks. I’m literally crapping bricks at all the potential infection involved in al this coming and going so if you’ve got 4wks isolation whilst hard it’s something to be grateful for.
Lablady

[blobgobParticipant]

I had an ASCT in 2021 during Covid. So no problem with visitors as no one was allowed any!

I was in hospital for about 2 weeks. The first of which was pretty horrible due to the initial treatment. The second week was waiting until my platelet and neutrophil counts got up above a certain level. They infused a couple of bags of platelets to help me along!

I could not have managed at home for the next month without the full time help of my wife, who took time off work to care for me. I bought a mobility chair which I slept in for the first few weeks, as it made it much easier to get up and down. I needed to use support rails to get up when in bed.

But in the end it was all worth it. I was back to mostly normal in around 3 months.

[maddogladyParticipant]

Hi thanks for responding to my post my husband is only 54 so not elderly. After 5years and a lot of treatment we seem to be running out of options which is scary. At the beginning we’ve went through stem cell it involved a 4 week stay in isolation I didn’t visit as was in covid .Then lenolidmide maintenance fatigue was a real problem so be prepared for a slow recovery.My husband set him self small goals like short walks and after time being able to walk to end of street.Hope all goes well x

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