Experiences of returning to work post treatment.

FormerMember
FormerMember
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I finished treatment (RBendamustine) at the end of March, and found out that I was in remission at the end of May. (Obviously good news!)

I had felt my recovery was going pretty well, but now that I have returned to work, I'm struggling again. I'm on a phased return, but even this gentle beginning feels a huge challenge. I think it is both emotionally and physically difficult. I work as a primary school teacher, which is fairly exhausting at the best of times (!) From September I will be doing 2 and a half days per week, but I'm even wondering if this feels realistic.

I am really interested to hear how people feel they have managed returning to work/how long they have felt it was before they felt able to perform 'normally'/if they ever did?

I am only 48, and hadn't really imagined stopping working just yet. My consultant very much encourages people to work if they can, as a good distraction from the emotional complications of the condition.

All experiences and advice welcome. Thanks.

  • I too did a phased return to work, to a sit down job working on a computer but involving a lot of concentration/ thinking. It took me longer than both I n work expected but fortunately I had an understanding manager. I was 48 at the time as well. I only took early retirement in 2014 due to having had a minor stroke the year before, which affected my concentration even more.

    You may feel differently about doing 2.5 days/ week from Sept after you've had the long summer break? I can't imagine working as a primary school teacher after having cancer, but then I can't imagine myself being any kind of teacher tbh 

     Did your cancer affect u physically? I dunno much about follicular lymphoma. Mine was kidney cancer 

    Best of luck.

    PS sorry for odd spacings. It suddenly goes awry mid sentence

    Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
  • It might b worth asking the helpline about work n cancer too?

    Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
  • FormerMember
    FormerMember in reply to buttercup01

    Thanks for response. Still early days. As you say - time to assess over the Summer.

  • Hi again , so congratulations in being in remission - good first step.

    The post treatment journey is the next big step.

    Some folks on here like has worked throughout his treatment teaching 5 year olds (In Vienna - not jealous at all) but others have struggled a lot.

    As I retired from teaching (FE) a few years before my condition kicked off I have no real life experience to give you...... but on reflection, I don't think I could have been able to go back to teaching but my journey is rather diffrent and I am left with a less than good immune system.

    You do need to reflect over the summer as to how you are doing and keep talking with your Education Department. You may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00 This free service covers Emotional Support, Practical Information. and out Work Guidance team can ensure that you understand what you are entitled to expect..... mostly open 8.00 to 8.00 but check the link.

    Post treatment recovery and support is one area our wonderful NHS can do more on. Make a cup of tea and have a look through this great paper that unpacks the post treatment life.

    ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • FormerMember
    FormerMember in reply to Thehighlander

    Oh my goodness me - thanks Mike - what a wonderful article. Pretty much articulated everything I have whirring through my mind at the moment. A great sense of validation. 

    Thank you.

  • Great that you found it helpful Wendy...... now the next step.

    I always challenge folks to become proactive after reading through the paper using it as a vehicle for change and life improvement.

    So get a note book or some sheets of paper and put pen to paper - it is a good way forward.

    So a page per subject heading. Start detailing the things you have done already to move life on in each area and then start to set some achievable goals to work towards. 

    When you achieve the first goal on each lists, tick it off and then put a new goal at the bottom of the list. By doing this you can actually see your progress and celebrate achievements.

    When I say celebrate I do mean giving yourself treats and gifts........ you have life - celebrate it.

    The headings would be:

    What steps am I taking to regain trusts in my body?

    What steps am I taking to regain trust in myself?

    What steps am I taking to overcome living with uncertainty?

    What steps an I taking to deal with the world?

    What steps am I taking to regain mastery and control of my life?

    Try it, the future is sitting in front of you - think about driving a car. The big windscreen shows the future, the past is in the little mirrors and is getting smaller and more fuzzy as we move forward.....if you concentrate on the past you crash.

    ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • FormerMember
    FormerMember in reply to Thehighlander

    Thank you Mike for all of your consideration with this. Already last night, I decided that I need to be assertive at work at ask (tell!) my Head that I need to step back from the pace of my phased return. I'm meant to be doing three full days next week, and I'm just not ready. 

    To link the article to your response, we can decide, to some extent, on what we want to be through the windscreen. Not as far as progress of illness of course, but about how we want to live the life we still have ahead of us.

    I love the weight the paper gives to emotional recovery - and this is the reason I am sure that my seeming physical recovery has gone to pot since returning to work. I have not been emotionally ready.

    Thanks again.

    Wendy

  • Good morning Wendy, it is good to hear that you are more settled in your own mind and are taking control.

    Controlling your physical and mental ‘well’ is a very important step in the post treatment convalescence. In the early days we can tend to dip in and overuse the strength that has been built up. 

    My dietician told me that a normal healthy person uses 20% of their daily energy intake to keep the brain going, if that person gets sick that goes up to 30 - 40% add cancer it’s 60 - 70%........ and this is the fatigue we all have to deal with.

    The rest of your life is waiting for you, but what you do now can have an ongoing and even long lasting effect on how this progresses.

    I am assuming that you are South of the border ;) so the end of term is on its way, so a good opportunity to refocus, enjoy some down time, put the cancer box on a higher shelf and ‘be you’

    I am sure that you have a clear handle on the rules with regards to your phased return as in reality you most likely want to be going back full time in the future and you don’t want bridges burned.

    Unless you work in education people don’t totally understand the pressures. I always got the “but you get 6 weeks holidays in the summer” but little did thy know that I worked equivalent of 3 of the weeks preparing for the new term as the system decided to change all the course work and as I was a team leader I also had to oversee the student recruitment.

    I took early retirement when I was 55 (2011) by then I had been living and being treated for my NHL for 12 years but as my condition was a skin Lymphoma stress made a difference to how it reacted so we made a lifestyle choice. I could not get medical retirement as my condition was a ‘Peripheral’ Lymphoma and did not ‘fit’ the criteria even although 2/3 years later it was killing me...... but on reflection we made the correct decision. 

    Its always good to talk through stuff so we are around to listen and put in our experiences.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • FormerMember
    FormerMember in reply to Thehighlander

    Hi Mike.

    Thanks for your kind and sensible words. I think I have very much 'run before I could walk,' and need to take back a bit of control from my employer.

    Like you, I have already been told that I would not qualify for ill health retirement, (I only trained at 40, so there's nothing in the pot anyway!) I have no intention of returning full time - and really for me, I think the big decision is whether it is sustainable, or whether I even want to do it, against the backdrop of a treatable but not curable condition. 

    I am south of the border (!) and will use the holiday for convalescence, which having read the article, is actually where I need to be rather than storming into rehabilitation. This will give me some proper time to reflect on the future. And address those lists you have suggested!

    Best wishes

    Wendy 

  • Hi again Wendy, the sun is out up in Inverness so looking to have a trip over the the Black Isle (its not an actual island?) see the Dolphins and have a meal out - just because we can.

    You will see from my profile that my/our journey has been rather long. When I left the Stem Cell Transplant unit back in October 2015 I was in a wheelchair so did have to 'learn to walk'...... but it was a good time of reflection and time to reassess what was important and what was not.

    I am in remission but it can well come back - So we live appreciating each day we open our eyes and when we close them at night we are thankful for that day. Not that we live from day to day but more........ more an appreciation of just being able to do stuff - stuff that is important to us.

    I see the cancer journey to be like a climb up a craggy Scottish Mountain. 

    These Mountains have well trodden paths with little cairns (stones on stones) put up by the many folks who have walked these paths before us.

    At each cairn the path divides in two - these are the points of decision - like..... How we deal with side effects.....? The mental and physical challenges.....!! The picking our selves up 'again' times......!! It’s scan time again....!! How can we move on...?

    We do have to look very carefully at where each track will take us. Do we knuckle down and tough it out and keep climbing up or do we take the low path and keep going round the hill and not reaching the summit...... not seeing that view for the first time.

    When you look at the cairns they are always just on the tracks that will lead to the top. So each stone that is put on the cairns is a "yes we can do this" decision......... keep putting the stones on the 'yes' cairns....... and every now and then have a look back down the hill and see the starting point and all the little cairns on the paths you have taken. The further you move on, the past looks very small and fuzzy at the edges.

    If you keep walking the low paths you will see stones left at the side of the track where that hope and dream was lost.

    Always around to listen x 

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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