[rabbitParticipant]

Hi everyone,

I was diagnosed with MM in December 2022. I took 4 months off sick from my employer while I was at my worst (in terms of both physical and mental health), but I am now working from home full time doing office style work. This is a constant source of amazement to my consultant. However, the fatigue is only just about allowing me to do this. Also, my MM is high-risk (so the retirement plans for a few years time that I once had are now unrealistic). I am thinking of going part time to at least have some kind of semi-retirement.

What are people’s experience of work post diagnosis? Are you able or willing to work full time, or is it just impossible to work at all?

Of course it depends on age, type of work etc…

[znabParticipant]

Hi Rabbit,

I was diagnosed in July 2022 and after a year off work I returned in September this year. I’m a teacher and I’ve found it really tough! I’ve had a phased return, thank God. Physically, I’m really tired at the end of the working day and grateful that I have days off in between. I’m getting stronger but am hoping to go part time as I think that would suit me best. Mentally it’s a struggle – just being back is hard work and being off for a year for treatment hasn’t been easy. Plus, its not over! I haven’t started my maintenance treatment but that might make me feel more tired.

I feel blessed to be back. Sometimes I think that I went back too soon, but I’m glad that I did it. I feel proud of myself.

I hope that it continues to go well for you.

Zainab

[rabbitParticipant]

Hi Zainab,

I am glad that you have made so much progress. I imagine that, being a teacher, work is tougher for you: being on your feet, not being able to have a nap until you get home, marking homework after the school day has finished…

I was under some pressure to return to work sooner rather than later. After a couple of months of sick leave on full pay, my sick pay had reduced. Another couple of months and I wouldn’t have got paid at all.

All the best, Zainab, and I hope that your maintainance has no side effects.

[spk2021Participant]

Hi all

I never imagined giving up work as it was central to my life, but I have and it has been quite liberating. There are other things to do with my time!

I decided to also take my workplace-related pension early on the grounds of I’ll health and this has given me some financial cushioning. It was stressful sorting that out amidst everything else going on, but it went smoothly.

It’s been (and still is) very difficult losing that sense of purpose and focus in my life, but I am now trying to focus on other important things, and frankly, the importance of what I did has rather paled into insignificance!

[rabbitParticipant]

Hi All,

To update: I am about to go part time. Despite being in remission, I am too fatigued to continue on a full time basis. Besides, I was planning to semi-retire in a year or two anyway.

This way, I can go on all the holidays that I want (my kids don’t mind me spending their inheritance), especially as my employer has been very supportive.

[blobgobParticipant]

Hi Rabbit,

I hope you enjoy your part time retirement. I guess a lot depends on your age as to your options, certainly regarding your finances.

I was diagnosed with MM when I had just turned 65, in 2021, and was off work for 7 months due to my chemo and then stem cell transplant. So I was just short of the current retirement age (66) when I was ready to go back to work. The thought of having to do the daily commute into London at least 4 days a week, was not very appealing, having worked from home during Covid times, so I took my employers offer which paid me up till I was 66 and left.

I’ve joined a few clubs that I’ve been planning to join for years, and what with other involvements, I find I have to manage my time so I don’t get worn out! If anything, I wish I had retired earlier. But then my pension pot would have been hit harder till I started to get my government pension.

The times I felt most tired, were a few months after my stem cell transplant, but this was improved dramatically, after I was found to be anaemic due to iron deficiency, and a few bags of Iron injections later, my Haemoglobin was back up to normal levels and I definitely felt I had more energy.

Good for your kids, start spending immediately before they change their mind! 😉

Best wishes,
Derek

[rabbitParticipant]

Hi Blobgob,

I am only in my fifties: that is the key financial reason for the “semi” in my semi-retirement.

Like you, I worked from home during Covid. I still am working from home! Although a lot of employers are trying to get staff back into offices, mine is relatively laid back about this. Besides, commuting would bring unnecessary infection risks (from crowded trains) and my fatigue would make it exhausting.

For myself, I generally have a quiet life of reading, music, exercise and spending time in nature, but I am fitting in as many holidays as possible!

Rabbit

[blobgobParticipant]

I wish you well with your semi-retirement Rabbit!

[daffodilParticipant]

Hello everyone,
I was really pleased to find this topic, as I’m struggling with work questions right now. Just diagnosed, and about to start treatment. I’m 60, and was planning to work at least a couple more years, but now wondering how much time off is typical. Do people usually have to stop working as soon as the first-line drug treatment begins? (i.e., before you get to the STC point)? I perhaps naively imaging the drug treatments might make me feel better, but I’m wondering if that is unrealistic.

[blobgobParticipant]

HI Daffodil,

After initial MM diagnosis, I was started on VDT combination, 28 day cycles, and certainly was not fit for (office) work during this time. While I had no major side effects, I was simply too weak to entertain any form of office commute, and my mind would not cope with the usual daily work pressures.

Six cycles were planned, but five was enough to get me on the list for a SCT. And after the SCT it was another 3 months before I was fit for work.

But it all seems to vary greatly for each individual. As you will no doubt see as you browse through the forum and find others advising of how it affected them.

[daffodilParticipant]

Hi everyone,
thank you so much for the helpful feedback – it is nice to hear from people who have lived it. At the moment, the pain and fatigue are interfering with work, and now that i know I have this, the emotional part is challenging too – I feel like I’m faking being “ok” and “upbeat and positive” but it’s all thin ice. How long does it take to get over the emotional shock?
daffodil

[rabbitParticipant]

Hi Daffodil,

For me the emotional/mental challenge at diagnosis was pretty bad. It came out of the blue: I had seen a haemototologist about bleeding, she ordered lots of tests, and then I was referred to an oncology department!

I was only 55, and learnt that I was already at stage 3 (there is no stage 4 for myeloma). I was also ‘high risk’: in plainer English my myeloma is among the (roughly) 25% that is more aggresive as my chromosomes are abnormal.

I don’t have friends, and my immediate family were all struggling themselves with my diagnosis, so I had to bottle up much of how I felt.

One day, one of my adult ‘kids’ told that I should stop feeling sorry for myself. Although a brutal message at the time, he was right to do so. I am now getting on with life, going on holidays, enjoying music, film and TV, and leading a healthy lifestyle.

I do get low from time to time, but on the whole I am now pretty cheerful and relaxed.

Regards
Rabbit

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