Coping mechanisms

Hello mementomori, so sorry you're having to deal with this at such a young age too.

You've had some great replies so I don't want repeat all that's been said. I just wanted to welcome you to our lovely group.

It's tricky to advise on the work situation as side effects can differ so much even if someone has the same cancer as you.

I held on tooth & nail to work for as long as I could but it soon became clear that I couldn't push myself anymore and reluctantly gave up. It was a great distraction being at work with friends, colleagues & children, but I suppose it all depends what you do. I hope your employers are very supportive & not putting added pressure on you. Have you managed to work up to now in between treatment?

Please try not to worry about being a burden. I'm sure your family and friends won't see you as this and will want to do all they can for you.

Big hugs to you

little-fi x

Hi memento Mori,

Welcome to the group. I was diagnosed this time last year and became incurable last April. Please click on my username to read the medical side of it. I don't want to offer advice re work as everyone is different but I can tell you my take on it. I was off sick after my 1st op and was planning to go back after 4-6 weeks but due to the escalation of events have remained off sick. I was referred by my Macmillan Cancer Nurse to Welfare Rights, they gave me information re benefits etc. Due to after effects of treatment I am unable to return to work, I wouldn't have the stamina. I also don't want to subject myself to the stress as I was in management. I will shortly have my employment terminated, I have sold my car and given up my professional registration. Cancer certainly strips a lot away, I used to say that cancer had stolen my life. However, there is more to life than work and I feel the need to make the most of my life, with people I love. Nobody knows how long they have left and everybody's circumstances are different. Only you can know what's right for you. 

A x 

Hi mementomori (thanks for explaining the meaning) 

I was diagnosed as treatable/incurable from the start (Nov 2021), so a bit different from you.  

mementomori said:

How do I decide whether to keep working or not?

I have wavered on this one.  I initially assumed I would just carry on.  That lasted about a week!  Then my husband advised he thought I should just stop.  With a prognosis of 5 years that seemed realistic.  Then I started treatment and it went well.  I never planned stopping work at 55 let alone 53 so I was a bit concerned whether we'd have enough money especially as my youngest had just started Uni.  I had the summer off work as a trial.  Hated it!  Everyone got under my feet in the house and I had no "me" time.  Also I had a reaction to my treatment and it had to be temporarily stopped so I was thinking about cancer the whole time.  I went back 3 days a week and this seems to be a good middle ground.  I also go into the office these 3 days to get some head space. 

I don't think there's a right or wrong answer regarding work because everyone's situation and priorities are different. But a common point I keep reading on here is  that people find work can be a good distraction from the C and provide a sense of "normality", structure to the day/week etc.  

Hi MM, I'm sorry to see you hear but welcome anyway, most of what I could say has been said by my friends, the easy bit is getting used to the side effects, the hard bit was the mind set not just mine but family and friends, but we do come to terms with it, and learn to live and laugh again.

Yesterday was 2 years since diagnosis, incurable from day 1, I joined my online family the incurable incurables, it's good to be daft at times.

Read our profiles and do yours.

Hello mementomori. I am recently diagnosed and just want to say hi and that people on here really understand.

Hi mementomori a very warm welcome to the group, but so sorry you find yourself here, especially at such a young age! 

When I got my incurable diagnoses, I was determined to carry on working. Unfortunately for me, my employer made it very difficult for me to work, lots of very snide and unwelcome comments, telling people my story, when it was my story to tell etc. I went through all of the disciplinary procedures to make sure this horrid man could not treat anyone else in the same way, but after all of that, I was exhausted. So I left, but I left on my terms not his. 

It really is a personal decision whether to continue to work or not. Can you cope physically with treatment? Will going to work give you the space you need to escape from the cancer world ?  I think you will know what is right for you. x 

Hi sistermoon , you're quite right, it is hard to give advice about work especially to people you don't know or don't know what their relationship is with people they work with. 

In my own case there isn't an equal with anyone here. I was diagnosed in March 2015 after a few years of my red cells up and down, up and down, until the red cell count dropped low enough to give an accurate diagnosis after a bone marrow biopsy. I was diagnosed with MDS, a bone marrow cancer. 

As I had been working all that time I didn't suddenly need to give up work, I continued even after a nurse or two thought I should give up work and let my body fight the disease.

My GP, a near neighbour and someone I considered a friend, the son of the previous GP, knew my medical history and was also a proponent of me stopping work, promised me that the surgery would back me to the hilt concerning sickness benefit and DLA as it was then. I can't deny it was tempting but I had a very loyal employee of 20 years my right hand man, to consider and he had 3 young daughters. 

Well, something was to happen that was to make that choice inevitably in favour of stopping work. 

During the month of July immediately following my March diagnosis we were in Aberdeen to visit my son and his partner and my left leg began to have a pain from top to bottom. I made a GP appointment for my first day home. By then the pain was very powerful. The GP referred me to hospital and I was diagnosed with severe spinal stenosis which was getting worse by the day and 2 or 3 weeks later the surgery found me a wheelchair courtesy of the Red Cross! 

So that's my (long) story which has no equal here as far as I am aware. Everyone's journey and decision is unique.

Tvman xx 

Dear mementomori , thanks for explaining your username, I was intrigued. I was a young 49 when diagnosed and nearly died last year. It may sound old compared to you but I'd only just worked out who I wanted to be in life, and I was hoping for another few decades.

Your situation is rubbish, I'm sorry. I have recently accepted that I have to give up work but it was a hard decision. For me, I want a 'retirement'before I snuff it. It might not feel the same to you. You have every right to still work, in your existing or in a new way if you want to and can. But you also have every right to play it differently, you don't have to keep going always.

I don't know how to suggest you cope, but I'll share a wise thing my sister said when I went through the shock of a break up years ago. She said, let the left side of your brain deal with it. Don't try to work it out. Let your body work out what it feels about it while you just put one foot in front of the other.

Best, Sarah 

Hi Chelle,

Thanks so much for your response - how absolutely awful of your colleague to treat you in such a way.

I'm very lucky in multiple ways with my work - I work from home, and have an amazingly supportive group of colleagues, who I have never met but feel much more like friends and family than coworkers. I also have the ability to choose my hours, to an exty.ent, which means that although it is 5am here in Australia, I am working away since the steroids I'm on woke me up early!

I have been through lots and lots of treatment and complications already. I suppose I'm fearful of "wasting" time doing work when I don't know (or want to know) how long I have left, but at the same time I feel very fulfilled in a lot of ways by working.

I'm actually a doctor by training, but have unfortunately not been able to begin my career because as soon as I graduated, I was diagnosed with my first tumour. Every time I tried to commence my career, another tumour popped up! I suppose some things are just not meant to be.

However, I'm doing my best to remain as positive as possible, and live as "normally" as possible for myself and my family. Side effects from a tumour on my spine have left me limping at the moment, but I"m hoping that radiation therapy will clear this up.

Some days it's hard to keep my head up, so the days when I feel good I try to get out and do things.

My amazingly supportive partner has just moved in. I fear for what he'll have to deal with in the future, but am so glad he's here by me. He often knows what's best for me before I do (for example, getting me out and about when I'm feeling sorry for myself), and even when he frustrates my by leaving his shoes all over the house, his presence is a comfort.

Thanks again for your response. I can't wait to get to know everyone here more, I feel like I've stumbled upon an amazing community.

<3 MM

Hi Sarah,

Trust me, I think that any age is too young to be told that you're incurable!

Sarah 49 said:

She said, let the left side of your brain deal with it. Don't try to work it out. Let your body work out what it feels about it while you just put one foot in front of the other.

This perspective is very helpful. I am a very "right-brained" person in so many ways. I have always been a "Type A", who needs to take action to solve problems. Unfortunately, life has thrown something at me that I can't think my way out of, no matter how hard I try. I suppose it's God's (or the universe's) way of teaching me a lesson that I needed to learn.

I've been writing a journal for my family to read eventually, and I'll be putting that quote from your sister in it alongside my thoughts, if you don't have any objections. It is really very astute advice for situations like this, and applicable to many others I imagine (like a breakup, as was initially intended)!.

Thank you sincerely for your response. It's greatly comforting and appreciated to chat to others who know exactly what I'm going through.

- MM