Hi,
I have just been diagnosed with Stage I/II favourable lymphocyte rich Hodgkin’s Lymphoma. I’m 60 and otherwise in good health. It is not possible to have concessions at my demanding job so they are going to have to hire someone until I can go back full time. I will be receiving 3-4 months ABVD followed by radiation. I will need to let my work know how long to advertise my job/leave of absence for. My doctor has said it will take me a while after treatment to recover but was not more specific than that.
Is anyone able to let me know their experience and what I should be telling my work about the number of months off work?
Thank you for your help!
Hi @calerad welcome to our forum and a how long is a piece of string question.
Your doctor really is the best person to answer your question and then it would only be an estimate as we are all very individual with individual medical histories and react differently to treatments.
I will copy you the Blood Cancer UK details on money and work
Blood cancer: money and work | Blood Cancer UK
I hope others will be able to share their experiences for you
Be very kind and look after yourself and please do keep posting how you are getting on
Thank you so much, Erica!
Hi @calerad.
I hope
Others can share their experiences but as @Erica says, every journey can be so different in terms of recovery time. Has your consultant given you any indication of timescales?
Hi @calerad,
Welcome to our forum. I am sorry to read that you have recently been diagnosed with Hodgkin Lymphoma.
Whilst I imagine it is very difficult to know that work are unable to make any concessions for you, it is reassuring to know that you will be able to focus on your treatment and looking after yourself during this time without the added stress of work.
ABVD is a combination of 4 different types of chemotherapy drugs. Each cycle lasts 4 weeks (28 days). You have chemotherapy on day 1 and day 15 . It is physically and mentally challenging and can cause extreme fatigue. Everyone reacts differently to treatment and can experience different side effects. Radiotherapy can often start quite soon after chemotherapy finishes. The amount of radiotherapy you will receive will be due to many factors and will normally be given in single sessions called fractions over a period of a few weeks. This will be discussed with you in detail at your radiotherapy planning appointment.
Whilst every one responds and recovers from treatment differently. Taking into account you will be having both chemotherapy followed by radiotherapy, from experience as a specialist nurse, I would suggest that you need at least another 2 to 3 months following treatment before you go back to work, especially if a phased return is not possible. I would also suggest discussing this with your Clinical Nurse Specialist, if you have one.
I hope you have find this information helpful. Hopefully, some of our lovely forum users will post about their own personal experiences to help you too.
Let us know how you get on.
Take care
Fiona (support services nurse).
Thank you Nichola. The chemo will be approximately 4 months followed by radiation.
Thank you so much Fiona. I really appreciate having an idea what to expect in terms of time. It’s been a process getting my head around this diagnosis and what is to come.
Hi there
You are covered by the disability Act due to a cancer diagnosis
You will need your long term ill health policy which will state what sick pay you get
You may want to take a month or two to see how your treatment affects you
Your employer can make reasonable adjustments
Follow all your policies and procedures and keep a diary
Thank you for sending this. I am actually in Canada but I’m sure there are laws about discrimination based on illness here as well.
Hi sorry to hear about your diagnosis but glad you have this forum for support. You’ll likely need several months to regain your strength and energy levels fully. Radiation can also cause fatigue, which may last for a while after treatment ends.
There are so many things that influence recovery : Age, overall health, the type of chemo, the intensity of radiation, and the type of work you do all play a role. A demanding job will likely require a longer recovery period.
I started my chemo ( RCHOP in May 2018, had 9 rounds the last in the November- and returned to work in a secure education environment in Feb 2019)
I found it was best to be conservative with the timeline I gave my employer as I was originally planned to have only 6 rounds of chemo but that became 9 and it was supposed to be every 3 weeks , but my blood count often created delays so my original expectations of going back to work in November were very unrealistic.
Here’s what I said:
“I’m anticipating being on leave for approximately 6-9 months total, encompassing the 3-4 months of chemotherapy and a recovery period afterward. This is an estimate, and the actual duration may be shorter or slightly longer depending on how I respond to treatment.”
I would emphasise that you are only giving an estimate and you’ll keep them updated as you progress through treatment. “I’ll be able to provide a more concrete return-to-work date as I get closer to completing treatment and assess my recovery.”
If your job allows, I would discuss the possibility of a phased return to work. This could involve starting with part-time hours and gradually increasing your workload as you feel better. This can ease your transition back and prevent you from becoming overwhelmed. I went back to work just a few days a week over 8 weeks with some days at home. I then still had an option to have a day at open as I began maintenance treatment for 2 years. I have a really supportive employer.
I must also be the only person in the world who liked the pandemic as 1 year after going back to work I was sent home for good and I ended up permanently working from home and still do to this day.
Don’t push yourself too hard to return to work before you’re ready. Prioritise your health and recovery. Returning too soon could lead to setbacks and prolong your overall recovery time. I was really tired in that year before I began working at home full time. Getting up at the crack of dawn driving to work , just all the seeing people , every day was so tiring although physically I was well I was exhausted.
Take at least a month more than you think you need ! I didn’t!
Some useful information here
Good Luck
Hi Jules,
Thank you so much for taking the time to write about your experience. It feels really good to have this support when everything about this illness feels so uncertain. My job is pretty demanding and I cannot consistently rely on getting help if I’m not feeling well so it was helpful to hear from you about not underestimating the effects of chemo and radiation. I will be receiving ABVD (not sure how many cycles) followed by radiation. There is a trial that replaces one of the drugs with an immune therapy drug and I am waiting to hear if I qualify.
I hope uou are now doing well and want to thank you again for your support.