CARERS / PARTNERS

General advice
1

Hi :slight_smile:

Im new to the forum

I was wondering if i could get some advice from a partner / carer whos other half is going through a the stem cell transplant.

My fiance on the 20th August was admitted to hospital to begin his stem cell transplant.

We have just started WEEK 3 which has gone so fast - as hes only 26 and so healthy hes definitely smashing treatment so far and doing so so well. However i do realise this is still very early on his journey and i can tell hes getting poorlier each day.

The reason for my post is i wanted to gain an understanding how people managed there lives with their other half being in hospital.

Ive been very fortunate to drop my hours from 8 hours a day in work to 5. And luckily i dont have any children to worry about on top of that - apart from our dog. We do have savings and a mortgage free house so financial im not concerned.
However iam finding it extremely difficult to balance 5 hours of work a day plus looking after the dog plus getting too / from hospital which is 45 minute drive from my house.

I wondered what everyone else did about work?
Did people give up there jobs to be a full time carer?
My biggest concern is in 8 weeks my ‘part time’ contract finishes and they will 100% require me back full time as the team is struggling with the added pressures / work load.

But i realise this will the time my partner needs me the most? as he will have only just got out of hospital in this time.

Can anyone offer advice to whether finishing work all together for a while would be a good idea? atleast till after xmas? so i can potentially be his full time carer? or will he not need me as much as im anticipating?
Many Thanks

C x

2

Hi there, I’m one of the Patient Champions here and a transplant patient myself, so I can perhaps give you some insight from the patients perspective, and hopefully others will chip in with a careers viewpoint.

Everyone will be different in the amount of support they want from their loved ones, and the amount they want to disrupt the normal lives of their carers. I know from my perspective I actually wanted my wife and my sons to carry on with their normal routine as much as possible. Whilst there was the obvious effect of me not being at home, I didn’t want my treatment to have a big impact on their normal daily activities. This was partly because I was treated in a hospital quite a way from home, so daily visits by my family would have taken a big part out of their day.

I also felt a little bit like I wanted to be left alone to an extent and just get on with my treatment in my own way. I was happy enough to see my family once a week, which gave me something to look forward to, but chatted to them by phone or Skype each night.

Your situation may be totally different, but my best advice would be to talk to your fiancé and see how he feels. You might make assumptions and make arrangements to reduce working when it actually isn’t necessary. On the other hand he might want your continuous support.

The amount of support he needs will also change during his treatment. Whilst he is in hospital for lengthy periods there probably isn’t much you can do, as he will be looked after by the hospital staff. He may want some company for a time and if the hospital is close then there’s no reason why a daily visit won’t perk him up. But the treatment is tiring and I know I spent a lot of time sleeping, so sitting at the bedside all day while he sleeps could be not what you expect.

For me the time I did need support was when I came home from hospital and didn’t have the round the clock care from the nursing staff. I was weak and couldn’t do much for myself. That was when my wife came into her own and she really kept me going, running around after me and taking me to outpatient appointments. That’s probably the time that having some flexible working arrangements will come into their own.

You must also look after yourself! Seeing a loved one go through chemotherapy and a transplant is very stressful and will be tiring. You will need support yourself so hopefully you have family and friends who can help you and support you too. You need to take a break from time to time or you will burn yourself out if you expect to work AND be a full time carer.

Start by talking to your fiancé and see what he needs from you, then see how it goes and adjust accordingly.

I hope this helps a little.

Take care,

Steve

3

Hi
I am in a similar position to you but a bit further forward. My friend (won’t call him my partner but we’re as close as) had his stem cell transplant in January. He’s 45. I am the one who’s there for him as he has no family close by. My journey was 1.5 hours to the hospital and I did it every weekend without fai throughout his treatment. I (probably like yourself) went through huge guilt trips that I couldn’t be there. All the time, or mid week, but I think (like Steve said to you as a patient) he was happy to get on with the treatment through the week and see me at the weekends. I was low on holiday days left so had to save them for when/if he really needed me. Work allowed me to use carer days for when he was discharged but needed to go up to the beatson every Monday to appointments. Like Steve says, I didn’t realise that the time he would need me most was when he got home. I moved in with him for 2-3 months but still had to go to work. I was under the false impression that he would get better and better when home, yet he got weaker. It was a tough time. Friends told me to take time out, which I did, though guiltily, even a day/afternoon away, but it really did help to recharge me, so please make sure you do too. It’s very hard on the carers, but it’s not about us we don’t think so we keep at it, but we do need to talk about it too. You will know when you need the days away from work. Speak to your partner, ask what he wants. My guess is he feels guilty enough having dragged you into the nightmare too. But stick with it. It does get easier. My friend is 8 months post transplant now and is awaiting the last of his immunisations so he can think about returning to work soon (he’s a doctor), his bloods are still wobbling a bit tho so that’s holding him back. I hope this has helped a bit. It feels good to give advice. Keep faith. You need to take each day as it comes. A friend said that to me. It’s very true. Steve - thanks for your side of your story, it rang true in so many ways.
C