This topic contains 15 replies, has 9 voices, and was last updated by 
Philipandfiona 10 years, 9 months ago.
Hello everyone!
I’ve been doing a lot of thinking (too much really!) about how to manage work alongside supporting my husband who is coming to the end of his first chemo cycle. At the moment I can’t leave him for more than a few hours, as he is struggling to do most things. He’s very tired, but it is more the physical limitations from spinal damage that makes it difficult for him.
I have a full-time job but currently have a certificate from my GP restricting me to 3 days a week in order to help me cope with the latest developments ( my husband was only diagnosed with MM at the beginning of jan, but had solitary plasmacytoma and 2 rounds of surgery to his cervical spine last year, plus radiotherapy).
I know I need (and want) to do what is best for my husband and for me, but I’m also conscious of my responsiblities towards my employers. I don’t want to make rash or hasty decisions, particularly as we’re at an early stage and I don’t know how things will look longer-term, so there are options like a temporary reduction in my working hours to keep my options open. We are both in our 40s, so lots of working years ahead, and pensions to plan for, and my job is not a 9-5 office job. It involves quite a bit of travelling, although i work from home a lot and my boss is planning to adjust my contract to officially make home my base. I’m also trying to write up my PhD, which I had to put off last year because there was no time between hospital appointments!
What I’m really interested in is how others of you who support someone with MM made your decisions about how to deal with work responsibilities. It just might help give me some ideas. I do realise we can’t predict how things will go, so I’m wary of locking myself into any arrangements.
We’re all different and every situation has its own particular needs, but I’d be really grateful if you were prepared to share something of your experience.
(I know I ask too many questions!! ;-)).
Thanks,
Sarah
Hi Sarah
This is a very difficult decision to make and takes a massive lot of thinking. My husband was diagnosed in 2006 with smouldering myeloma. I taught at the local university and loved my job. Frank was smouldering and although, sounds funny, was healthy. He didn’t need me around all the time. But I couldn’t concentrate at work, he was always on my mind, I even found it difficult to go shopping without him. I thought for ages about leaving but then our funding dried up and our Unit was closing. We were all offered other positions but I decided this was an omen and I took early retirement. I don’t regret it, as Frank was uppermost in my mind. I stopped seeing friends, going out and my life revolved round Frank. I was offered a position teaching young adults with problems I T skills. I turned it down. Now I regret not keeping on some of my teaching. Frank had SCT in March 2013 and is slowly getting there. Speaking for myself, I need something that is mine and nothing to do with Myeloma and I’m thinking of taking on voluntry work. It is a difficult and personal decision to make but after 8 years I realise that I was too quick to make the decision
I hope your husband improves and my best wishes to you
Jean
Thanks Jean,
I appreciate you taking the time to get back to me on this. I can really relate to not being able to concentrate and worrying about going off to do other things. I know I tend to make quick decisions about all sorts of things so I’m deliberately holding back at the moment.
I hope Frank continues to improve and that you find something that you find fulfilling.
Best wishes,
Sarah
Hi Sarah,
My husband was diagnosed in May 2013 with fractures in his spine and multiple myeloma. we are both 57.from January to end of april all he was offered was painkillers from his gp and physio but it was not improving and he was eventually diagnosed when his physi requested an mri scan. from January to april 2013 I was going through interviews and tests to keep my job at a local hospital as a medical secretary and it was doubly stressful with graham being ill as well.from diagnosis it took about 2 months until graham started improving and he then cut down his days as a teacher to part-time with part-time lesson planning at home. I have carried out working full-time as a medical secretary but it has been hard and I have been saving my holidays for when graham goes in for his sct which should have been yesterday but he has a chest infection and we are now hoping for next week.
after he has been in hospital a week I will be taking my annual leave to visit him and then look after him when he is home. In 3 months we are hoping graham will be in remission and we can both go back to how it used to be before this disease struck. I am glad that I haven’t given up work as I think it has helped along the way to do normal things but it has been very tiring and I feel in desperate need of a holiday.I have gone to all graham’s appointments with him but that has also been from my annual leave.at this stage now graham has hardly any pain in his back and he said even going through the sct can hardly be any worse than the horrendous pains he suffered from january to may last year when he really had no relief from it and horrible spasms of pain that sometimes made him fall to the floor and he also had trouble breathing at times.
Hope this helps and please get in touch if you have any other questions. Best wishes to you both.
Angela
PS Every time I did a capital the text of my post went onto a new line so I have removed all the capitals
apr
Carol – I am losing it. I am 56 for the next fortnight and graham is 56 until November.
Definitely losing it! You are not Carol you are Sarah. I think the fact that graham’s stem cell transplant yesterday has had to be postponed has had a bad effect on me and feel quite stressed this week.
Angela
Hi Ang, we know about stress for carers, before I went in my wife didn’t sleep properly, was verytired, worried sick and had a lot to do. Now I’m back, she slept well last night – can’t think why because she had to share the bed! Anyway I believe what is needed is as much help for the carers as for the sufferers because their stress levels are far higher, especially if they have a long way to go to retirement and a young family.
Hi Sarah,
It is a difficult balancing act but you are right not to rush into any decisions. Do you have people who live near by who can help? The reason I ask is that M may need a lot of help at the moment but as the treatment gets the Myeloma under control he may be able to do more without your help. If there are family or friends who can help you when you need some extra resources this may let you balance work and helping your husband more easily.
I was 38 and my husband Phil was 43 when he was diagnosed with MM. My employers have been very understanding and I have been able to have time off when I need it or long lunches when I need to be with Phil at one of his appointments. I am lucky that the hospital Phil is treated at is a ten minute walk from where I work, I am not sure I would have been able to cope if this was not the case. We are moving to a new office building next year that will be a 30 minute trip from the hospital so I may need to rethink things then. I have never attended every appointment with Phil but I have tried to be there as often as possible.
I still find it hard to concentrate at work some days if I am worried about Phil but I have also found it helpful to have something non MM related to concentrate on. We are too young for me to retire but I only work two weeks per month and I find this part time approach works well for Phil and I. I got way too tired when Phil was going through treatment and the SCT, I did not find a good balance then as there was too much to do between home, work and the hospital but I managed it and I am glad I kept my job as Phil is now only going to the hospital once a month for his Zometa and is doing well.
I have always kept my managers in the loop about Phil’s treatment so they know what is happening and what might happen. So far for me it has worked out okay but there are no easy choices, you need to do what is best for both of you and sometimes it is hard to know what that is.
Megan
Dear Sal
I’ve had mm for 3 years now, 56 when diagnosed. Given induction chemo, had SCT, relapse and next course of chemo. I’ve taken a lot of sick leave and am now back at work. My husband hasn’t given up his work either. I don’t take him to the hospital,( he’s a bit squeamish) and I found having him clattering about the house after my SCT was not restful so sent him back to work after 3 days. Since then we try to live as normally as possible and I try not to make him worry. I’ve cooked most days since diagnosis and kept doing as much as possible. We have saved our holidays so that we can go away…. As much as we can.
I’d keep as many options open as possible, tell everyone who needs to know what is going on.
The main thing this disease does is to steal your ability to plan… So you have to live in the now.
Love Helen
Hi
My husband was diagnosed after snapping his femur do the first few months were spent coping with that as well as the diagnosis and chemo etc. he had CTD then SCT but relapsed after a year. He didn’t work the first few months but has been full time since 3 months after the SCT. I spent the first 3 weeks by his hospital bedside and again when he was in hospital after SCT.
I still work full time. My employer has been fantastic letting me take the time off without taking it as holiday. They also let me have the time for all hospital appointments. As a result they’ve “bought” me. The loyalty and trust they showed will be paid back in spades when I can.
I don’t want to stop working and I think it’d be a bad move if either of us did. It’s not a battle. We feel it’s a marathon and we need to stay normal as much and as long as possible, so that MM doesn’t take over our lives more than it has already.
Whatever you decide, good luck. Can you ask for a bit of compassionate leave to consider your future?
Thanks for your replies, Angela, Megan, Helen and Fiona,
You’ve given me a lot to think about. I think the main message that comes across from everyone who has replied is that it’s sensible to keep my options open. I do have virtually all last year’s annual leave to use, as well as this year’s, so that gives me a bit of leeway. My GP is brilliant and very sympathetic, and has asked me to see her every 4-6 weeks. This started when I got a hospital-acquired infection after M’s first operation last year. At times she has given me a certificate so that I can restrict my hours at work as she has recognised that my stress levels have been quite high. As I’ve been in my job for over 9 years, I’m on the maximum sick leave allowance.
My employers have been sympathetic in practical terms, although at times I sense a bit of impatience. I think they thought M would get better and I would be able to get back to “normal”. I do have a lot of flexibility but there are only 5 of us working for the organisation and we each have quite distinct responsibilities, so if I don’t do the work, there is no-one else to do it. At the moment M has two appointments a week – one with his consultant and one for chemo. He can’t drive and public transport isn’t an option. In any case, at this stage, I want to be with him. I can’t leave him overnight and if I need to go out for the day, we have to arrange for someone to come round to get his lunch etc., as he can’t stand for long enough to do that. However, your advice is helpful, Megan – things should improve and I might then have more flexibility.
We don’t have family nearby. M’s mum lives about 90 minutes drive away and has weekday childcare responsibilities (looking after his sister’s children). I lost both my parents a few years ago, and my sister (who is brilliant and very supportive) lives about 2 1/2 hours away, has 3 children under 11 and a demanding job. We do have some good friends, and a lady from church came today to relieve me of my ironing pile – which was much appreciated.
I think the advice not to rush into things is good. I need to see what M’s ongoing needs are and find the best solutions for the way things are at different stages. I will arrange a meeting with my boss and bring him up to speed – again some good advice from some of you – and work out something that works for the next couple of months.
Thanks again all of you. I will be thinking of you all.
Sarah
Hi Sarah
I don’t post very often but still have a look now and again to see how people are getting on.
It is a very hard decision you are faced with especially as you have years of work ahead of you. My husband was diagnosed in 2008 just after his 53rd birthday I was 5 years older (I always said he was my toy boy but my daughter told me he wasn’t young enough apparently a toy boy has to be half your age!)
His first SCT lasted for 16 months and the second one did not take. I had been with the same company for 17 years. My attendance record was very good but when Stephen started getting worse I got a certificate from my doctor and because my “sick package” was generous I took it!! 3 months full pay 3 months half pay. I was due to retire at 60 but took early retirement at 59. My manager was fuming, but I didn’t care a jot. Stephen was gravely ill and not much else was important. I wanted to spend whatever time he had left being with him. My manager told me that I was leaving her and my colleagues in the lurch and she would have to get agency staff which would reflect on her budget for the year.
My manager’s manager allowed me to only work 2 weeks notice (it should have been 2 months) and my colleagues did not feel they were left in the lurch. They felt nothing but empathy for me and were great.
Yes we were short of money. Stephen couldn’t work by this time and as he was self employed nobody was going to give him sick pay. He did receive DLA and ESA. I had a small private pension (we are talking in the region of £58 per week and on top of that I received a reduced State Pension as I hadn’t worked until 60 All of that does not add up to much when you still have a mortgage.
We still used to go out either walking with his beloved Westies. Him on crutches and me trying to stop the monsters pulling (they may only be 12 inches high but they are unbelievably strong when they decide to pull) We used to go out for lunch once a week. Nothing posh. The Chinese eat what you like for £6.00 (We never ate a huge amount but some of the diners were unbelievably greedy) or the local Carvery £6.99 for 2 courses.
You said that your husband is at an early stage of his mm but maybe you are thinking about the future and I hope it goes really well for you both.
Stephen died on the 11th of September 2012 aged 57. Even after 16 months without him I still cry most days (and curse him for leaving me. Hey I know he didn’t want to go but grief has a funny effect)
As usual I have waffled on until the early hours of the morning, and I cannot really be of any help to you. Your boss sounds great and patient Look very carefully at all your options. I do know that I am grateful to have spent so much time with Stephen towards the end, but it is different for you. Different stage of mm, different age, different circumstances, different people.
I hope your husband does manage to become more mobile and that he goes into remission.
Do let us know what you decide to do, but whatever you decide I wish you both the very best
Gill xx
Hi Sarah,
One last suggestion after reading your response. I know it is not available everywhere but have you checked if M could have patient transport? When Phil had both femurs operated on he could not travel on public transport and driving to the hospital was not an option. Phil was able to get patient transport to and from his appointments. It is not an ideal solution as, at least in London, it often made it a longer day as you get picked up early and dropped off later than needed and you need to wait for other people to be picked up as well. They also did not allow me to travel with Phil, it is for patients only. You may want to look into it as a possible help a few days a month? You need to book it in advance so this may not work for you and M but it is good to check on all your options.
Megan
Gill,
I have started a reply to you a number of times but nothing I can say seems adequate.
Thank you so much for sharing yours and Stephen’s story. My heart goes out to you. I hope that over time you can gain some comfort by knowing that you made the best decisions for both of you, and that you can draw on the good and happy memories of your life together. The thought of the westies as monsters made me smile!
At the moment I’m really just thinking through a lot of possibilities about how I might make things work and, thanks to the advice of others here I have more of an understanding that there will be different needs at different times, so I need flexibility. I’m planning to have a chat with my boss next week, just to make sure he has some understanding that there is not going to be any predictability in my life, and starting to think through how I can fulfil my responsibilities to my employers at the same time as making M’s needs my priority. Of course I’ll be a bit more subtle than that! The support is there in practical terms, but he has had a bit of an “empathy bypass”, as I put it.
Thank you again, Gill.
Megan – thanks again. You do have some helpful suggestions. I hadn’t even thought about hospital transport. M used it when he was having radiotherapy last year, as he had to go to a hospital over an hour’s drive away every day for 5 weeks, and there was no way I could have done it (well – I could have done had that been the only option!). At this early stage I like to be at every appointment as I’m the one who asks the questions (you might have picked that up!), and M feels quite vulnerable, but it is certainly an option for more routine things, like physio appointments, or speech therapy (which he has because the neck surgery damaged a vocal cord).
Really helpful advice. Thanks! Hope you are having a good week so far.
Sarah
Good Morning,
My dad (86) has just been diagnosed and is refusing treatment. He has a wonderful team caring for him and is on a ward where he gets 24/7 support. However, he has decided after 7 days of being ‘prodded and poked’, his words, he is not going to have any treatment. I fully understand a persons right to chose but his team are positive that once his immediate problems are resolved he will feel so much better. How do I help him? Any ideas would be gratefully received.
J
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