Navigating life during chemotherapy

Hi, sorry to hear you’re starting chemo. I had stage 4 Hodgkin Lymphoma and had 8 months of ABVD last year. My plan was to work on my ‘off’ chemo weeks. It quickly became apparent that it wasn’t going to be possible. But it depends on your job. I have a dog walking/boarding business and after my first round of chemo it was clear I wasn’t going to be able to do that. I couldn’t climb my stairs, let alone walk a bunch of dogs. 

I also had 0 neutrophils for my entire treatment which meant I had 0 immunity. I was in and out of hosp all the time with infections, and was advised to ‘live like Covid times’ Only go out if you have an appointment, wear a mask everywhere, don’t let anyone in my home without a mask. I don't want to scare you because everyone’s experience is different. The chemo exhaustion was extreme. If you’re doing a job where you can sit on your couch and work, then you may be able to. 

Honestly I would just see how you feel when you start. I went back to work part time 4 months after I finished chemo and that was difficult. It’s still difficult now. You’re half my age so you may ‘bounce back’ quicker, but the recover from chemo has/is a journey in itself. I’m nowhere near back to my pre cancer self 8 months on from finishing chemo. Just listen to your body and your oncologist/chemo team and take things one day at a time. 
I hope your experience is much different to mine and you breeze through it, but remember that chemo is a huge toxic hit to your body. All the best 

Hi there,

Sorry to hear you’re due to start chemo. I was diagnosed at the age of 26 with stage 2 HL and had 6 months of ABVD. I know it can seem like a pretty daunting period ahead, and although everyone’s experience of treatment is different, I thought I would share my experience to perhaps give a little insight.

It’s great that your work is being flexible, but as HBWren mentioned above, I think it’s fair to say that work will probably be the last thing on your mind during treatment. I found that the first three days after treatment were the toughest, after that I started to gain a little energy and could go for slow walks in the countryside to keep everything moving and get some fresh air. About a week after treatment, I was able to do some light bodyweight exercises and felt okay to go out and about – always avoiding crowded or populated spaces. Me and my girlfriend visited beaches, forests, national trust parks etc, places where you can steer clear of others but still feel like you aren’t cooped up.

As you know, ABVD will significantly impact your immune system. It targets rapidly dividing cells in your body and can’t distinguish between healthy or cancerous cells. As a result, your immune system will be hit pretty heavily, leaving you prone to infections. I’d say it’s wise to avoid concerts in general until your medical team give you the okay. I was keen to go on holiday following completion of my treatment and my team advised I give it at least 8-12 weeks.

Treatment is tough, both physically and mentally but you will absolutely get through it. Yes, you need to be careful and try to avoid crowded/enclosed spaces throughout, but you can absolutely find ways to plan little trips out with those closest to you. Having said that, there will definitely be days where you don’t want to leave the house, or even your bed, and that’s fine too. It felt as though I put my life on hold for about a year during my treatment, but I saw it as a small sacrifice and once you’re through treatment, you’ll have the rest of your life to catch-up!

HBWren hit the nail on the head, just listen to your body, trust your medical team, and take one day at a time. You’ll get through it, you’ve got this!

I’m more than happy to answer any questions you may have about my experience, so feel free to reach out whenever!

Hi angeroo  I can only second what has been written here. I did escBEACOPdac for 4 cycles (so 12 weeks) and I honestly didn't get up to doing much. Towards the end of the rest week (this regime had a rest week every cycle, not sure about ABVD) I did meet some friends for going to the pub outdoors and some smaller walks. I was 32.

I worked from home about 40% of the days during treatment, the rest I took off sick as I was going for treatment (and I was quite tired the next day or two after). If your work is flexible I would plan to work from home and pop into the office only if you feel like you have the physical (and mental!!) energy. I put on a mask when going to supermarkets, hospital or taking the bus, it is good to be safe but have to try avoid panicking and overthinking. I took a lot of care with my diet, avoiding any risks etc. If your team haven't told you anything yet, this is a very good guide https://bcuk.cdn.ngo/documents/Eating-well-with-neutropenia-Blood-Cancer-UK-info-booklet.pdf

I didn't know anyone my age and that was very hard too. When I finished treatment I joined this oonline community where there are a bunch of people on this age range. Also have been joining the young adults support group from Lymphoma action here, which I found really useful to share concerns, experiences... have a look and see if it would be for you. I personally shut down from everything during treatment but most people join the meetings as they go through treatment. 

Lymphoma Action | Online Support Meetings

Any questions drop a line here!

Hi angeroo and a warm welcome to this corner of the Community and it’s great that some of group members have picked up in your post.

I am Mike and I help out around our various Lymphoma groups. 

I don’t have Hodgkin's Lymphoma but was first diagnosed way back in 1999 at 44 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL.……. Eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

I would second what swift_dc has highlighted. If you are in the UK do check out 

You may want to also check out Lymphoma Action. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

They run various Support Platforms… with their closed FB group having over 5800 member with a good number of members in exactly the same position as you (with HL and the same age)…… as well as their Young Adults Meetings for people aged 18 to 35….,, Meetings are on the third Monday of the month at 7pm

I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey.

They also have a great Buddy Service where you can be linked up with someone who has walked the same treatment journey.

The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.