Hello and Post-treatment Help

Glad you got manged to get in touch.  I have started  the treatment for stage 4 cancer. Operation in 2 weeks  bowel an liver cancer  diagnosis Operation both done at the same time.  Then chemo  later .some days am fine then mentally I go to pieces. So no slapping from me. You have come a long way.  I'm  just glad you can come back from a stage 4 cancer . All the best  

Thanks for the response, I appreciate it.

Good luck with the op and follow up treatment. Having been through some of what you are currently going through, I won't insult you with 'positive' comments. I am not sure about your good self, but I found the 'positivity' of family and friends unhelpful. I preferred those that simply understood that silence and a hug was all that was needed. It's a very personal journey, and no two people travel the same road.

The mental aspect of cancer, diagnosis, treatment and recovery is, to some degree, as tough as the physical. But they are indelibly linked. I personally failed miserably to appreciate and prepare myself in any way for what comes after treatment, and it has taken time to admit I need help.

All the best, and thanks for your kind words 

Hi lhg288 and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear your story so far. I am Mike and I help out around our various Lymphoma groups. 

I don’t have Hodgkin's Lymphoma but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified 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 could well tell you to get a grip….. but the reality is the post treatment part of the journey can be as challenging (for many reasons) as the diagnosis and treatment journey.

There is no definitive handbook as to how do this but one of the best simple tools I have found has been this great paper….

After Treatment Finishes - Then What?

…… by Dr Peter Harvey as it highlights the post treatment milestones.

When I was first diagnosed back in 1999 (I was 43) I continued to work for 12 years in a demanding teaching job and yes had various treatments and worked through them all.

By the time I reached 55 as a family we sat and reviewed how my condition and the stress of my job was having a significant effect on me but also the family…… both our daughters were married by then but they were part of the discussion.

So we agreed that we significantly ‘cut our cloth and lifestyle’ and I pulled my teachers pension forward….. I lost some of the end benefits but it was the right thing to do.

We still had a few years in our mortgage but my wife was still working and we worked out that if I worked a simple part time job (I am actually a joiner) we would get through…… and we did.

But what we had not seen was the more aggressive type of NHL coming along 2.5 years later so this was when the real treatment started (See my story) as I had to go on to have significant treatments…… but I am coming up to 9 years out from my last treatment and turn 69 in Nov and I doing great.

Have a read through the paper…..,

After Treatment Finishes - Then What?

……… I would recommend that you read it through twice and during the second reading note down the top things that stands out to you….. then come back and tell us what your thoughts are.

Hello lhg288 and 3426 - I am now in remission from HL since earlier this year following 4 and 1/2 years treatment - not the most fun I've had with my clothes on or off. And I can poke my left eye with a fork as I had it removed due to cancer- yes that word! That bloody word.

Just a few thoughts - positivity by relatives and friends? They are also going through some of the trauma (pre-bereavement?) as you are. Perhaps it is their coping methods coming to the fore - hugs and laughs together are important.

So to support. Obviously I don't know where you live so no idea of support/sharing facilities which are around for you to take advantage of (not proper english  - from which you can take advantage). Is there a Maggies cancer centre near you? If so look them up  - every one is slightly different -  but from my experience of the one in Oxford they are invaluable. Group and individual support- information, knowledge and care for you and DO NOT FORGET THEM your family. There maybe a volunteer cancer support group in your area.

I am assuming that your (both of you) treatment centres have Clinical Nurse Specialist(s) who act as support for you and have a direct line between yourselves and the clinical team. Use 'em. They have tons of local knowledge of resources and how the hospital facilities operate.

Cancer charities such as Lymphoma Action are worth investigating - webinars, support groups plus tons of information. Always go for recognised ones. We've all heard of Covid deniers - believe it or not there is stuff on the web which makes your hair curl (assuming you have any after chemo).

Wherever/whenever you are being treated and asked "how you are feeling?", be open and honest with the questioner(s) they do not have ESP. If you are not frank then they are not able to competently be able to properly assess, for example, how to treat you. My treatment regime was ammended due to how I was coping.

Finally have a long distance hug from me and all the best for a gentle future.

Pete

Hi - Thanks for sharing your experience. Similar as you, this is my first post, I wasn't keen on joining forum while I was having treatment.

I got diagnosed with classic Hodgkin's Stage 4B, back in February. I went thorugh 4 cycles of escalated BEACOPdac, interim PET was good and so I got 4 cycles instead of 6 (I honestly don't even want to think about a situation were I had to go through another 2 cycles of chemo, same as you I might have gone for the fork).

Similar as you I am home based doing technical sales, but job is not as demanding or stressful yet as I just joined the job couple of months before being diagnosed so it is still new in a way. I would say a PM job is stressful by default and takes a lot of effort when someone is 100% healthy so I am not surprised it is so draining. For me job was a blessing as I could continue working about half of the days - I wouldn't have coped if I had any of my last two jobs, based on site and visiting a laboratory and manufacturing facility on a regular basis. And sitting at home not working meant I was just having intrusive thouhghts all the time. Now the downside is that I don't really move for 8 hours a day and so going back to normal takes a bit longer than if I was going to an office where you walk more, are on your feet for longer, etc. Also not used to socialise face to face anymore and so when I do it is exhausting.

I was very fatigued throughout my treatment, my hemoglobin went below 95 several times (140 and more pre treatment, I am a 31y old male and I have been exercising my whole life). There were days I couldn't even put the dishwasher or put new sheets on the bed. After 3/4 weeks from the last chemo I started to recover. The recovery was very steep for say 4 weeks after chemo to 8 weeks post chemo. Now I am on 11-12 weeks post chemo and the recovery has slowed down quite a bit over the last 3 to 4 weeks. I have been able to do indoor cycle and I Try to walk 4-5 km a day, during exercise I am okay but in the mornings I am knackered. I spend 9.5 hours in bed, average, 8-8.5 of those sleeping... before I wouldn't be more than 7 hours in bed. My blood counts have improved a lot and so now Hemoglob is back at normal levels which means exercise is okay. 

I talk to a therapist every 3 weeks (through a program at work) and one of the things she mentions is the emotional toll and the expenditure of energy in non-physical activities. Before I wouldn't get tired from talking to people or being in meetings or sharing my thoughts, but now I do. I met a few of my work colleagues from my old job last week and I only sat in a pub for 5 hours but the next morning I couldn't get out of bed before 12. I was shaterred like I had done a massive physical effort the previous day... but it seems to be all the emotions and all the talking and listening which I am not used to anymore. 

About the anxiety. I am quite a calm person by default but I did have very anxious days during treatment (especially the first cycle as everything was unknown). Also my way of dealing with anxiety has always being running / cycling, anything physical, I never confronted anxiety any different... so during treatment this was not an option. I thought I would be able to do something but I soon realised that doing more than 2k steps per day was a massive challenge. After treatment, what stresses me is:

- Being in bed so long means you get to do much less in the day, for me it is 2 hours less a day. It really frustrates me not finding enough time in the day to do other things. 

- Being in a situation where you don't have any control of your disease and you are just waiting for symptoms to be / or not to be back. There is nothing you can do in terms of diet, routines, exercise or whatever to prevent this crap from happening again. So that is draining for me, but I am adjusting. 

- Working from home and feeling a bit stuck in the sense that you know it would be helpful for you to move around and go for walks but the job means you are on your laptop for the longest time every day. Because of treatment you also despise being at home (at least I do) and so having to work at home does not help my anxiety levels either. 

Hope it helps, it is my first time in the forum but I will keep an eye to check responses. 

Hi swift_dc and a warm welcome to you. I won't repeat what I put up in my early post to lhg288 but I think this would be a good opportunity to add some more helpful links.

You all may want to 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 regular Support Platforms. There is a monthly group specifically covering all things Remission........ I highly recommend these groups (online and in-person) as there is nothing better than ‘talking’ with other who have walked or are walking the same journey.

They also run the very good Lymphoma Focused Live your Life Course that is a peer-led, post treatment - self-management course.

They also have a great Buddy Service where people 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.

I have just completed 4cycles of escalated BEACOPdac …. Reading your post has really resonated with me. I haven’t met anyone else that has had the same regime.
It’s 2 weeks since my last chemo and I’ve felt very low in mood and energy which I wasn’t expecting.

I think I thought life would get back to normal as soon as the chemo finished, I was so focused on getting through the treatment, it’s like the reality has only just hit me. 

my PET scan is in 4weeks … maybe after that I’ll feel happier, and I’m hoping my energy levels start to increase soon. 
Everything you said about exhaustion and sleeping so much is same with me, I’m worried life will never go back to normal and what the future holds. 

Hi! Yeah, haven't met anyone with the same regime either. Last week I was recommended to check Lymphoma Action to try to find people who have gone through similar experiences, but I haven't checked anything yet.

I fully understand you, I thought the recovery post 4th cycle was going to be 'quick' but then you think about how many days and weeks you have been under a very strong chemo regime and how much drug accumulation you have in your body and well, it sort of makes sense that the recovery from each cycle gets a little bit harder. And you have spent so many days sitting either at home or at the hospital, sedentary life... now going back to moving and walking around is hard!

I got to understand that there are sort of two different 'drivers' behind the low energy: physiological and mental ones.

From a physiological point of view... 

• The treatment has a very strong impact on the red blood cells. My hemoglobin was around 85-90 when I finished 4th cycle, and it takes some time to recover. I think mine went to around 130 after 6 weeks, which is good but still far from where I was a year ago. Without enough cells to carry oxygen and nutrients around, your body does struggle a lot to recover. I thought of it like when people go and climb Everest and they cannot really recover at altitude, no matter how much they sleep or how much they rest. 
• You have also probably stopped the steroids, which helped activating body and mind during the treatment, and so the energy levels are lower without the prednisolone. 
• You have accumulated another 3 weeks of not much exercising I guess. I did lose a lot of muscle and getting back to trying to do normal household tasks was a big challenge.

From a mental point of view...

• I went from being under a strict protocol and following a clear path, having weekly blood tests and going to hospital all the time; to now being 'discharged' and being at home, 'forgotten', just waiting for the next appointment to come. That change is huge and it took me some time to adapt (I am still adapting and I finished 3 months ago now). You still have the contact with the hospital and nurses if needed but it just feels soooo different. And of course you are also waiting for the scan, so adding more stress on top of it. 
• I was more relaxed during treatment than after. I got more nervous and stressed, which led to worse rest as well and more energy wasted just being anxious. I did get a bit sad for some weeks as I went back to the routine of work + some chill time + sleep, then repeat another 4 days and wait for weekend... Like during treatment I was thinking how many things I was missing out and then you realise wow I did but not so many things as I thought, you still get a bit of a boring life during the week.
• I started talking to people more often, meeting a few friends and telling them my feelings and experiences... That is also draining from an emotional point of view and drains so much energy. 
• You also realise that you have 'lost' months of the year and time has past and you haven't done much, and that is also draining I think. 
• Not having someone in a comparable situation to talk to is also hard. I was the youngest person at the chemo ward (and I am 31, not 18!), and haven't met anyone with my staging or treatment yet.

So add both physiological and mental and it is indeed a lot to take in such a short period of time. But body recovers and mind recovers, just give it a few more weeks!

I spoke to a private doctor last week making use of the insurance I have at work. Nothing new, every doctor pretty much says the same thing, but she did say that dealing with your expectations is hard. It could take 6 months to go back to a reasonable comparable level of energy and fitness, but each person and case is different (as you have heard thousands of times since you started). And she stressed that this chemo is super strong and it is 'normal' to need time. So I think I was very anxious to be back to normal asap but I have been changing my expectations as I go along. I am fine now and can do daily activities which I used to do as if I was normal. But I do need to sleep, I do need the bed. And the exercise routine I have building on it but takes some time too. Having put 12kg (I was 81kg pre-treatment and 94 weeks after finishing) did not help with the energy and fitness either, but this will go away. 

Life won't be the same, we have gone through a lot and the way you see things changes. And you probably will always have this thing in the back of your mind, less and less and time passes, but still there I guess. But I do think it will get back to 'normal' and to what we used to do. And I hope that we will be able to enjoy and cherish life more than before after going through this (I am not there yet haha but hope to get on that mindset soon). 

So overall, I hate to say this word but what you are going through is 'normal' and definitely is the same I went through the month after finishing chemo. Once you get rid of the drugs and your body resolves the dependency it had on the steroids, and starts making more red blood cells, things will start to get brighter. 

If you want to discuss anything you can message / add me. I don't really know how this works as I have only signed up 3 weeks ago! 

You seem to be describing a lot of what I’m feeling ….. but I find it hard to put into words!

All my treatment was given as an inpatient, so basically days 1-14 of treatment I spent in hospital just waiting to get through the neutropenic stage so I could go home.

The escalated treatment is tough, but I think I’ll look back and be glad it was over 12weeks, although those 12weeks felt a lot longer!

like you my haemoglobin levels went very low in cycle4, and I had a blood transfusion but since I got discharged I’ve not had any blood tests so no idea at the moment where my counts are. 

Whilst in hospital I spent every day having blood tests and relying on these results to try to make sense of how I was feeling.

Think I’ll contact my CNS bot get a blood test booked in. 

I haven’t been able to work since Easter (I’m cabin crew). I really want to work but no idea when it will be possible …. I know I must be patient but it’s hard not knowing how long It will take for me to get back to full fitness to be able to do my job. 

it’s good to know that you are now coming through the fatigue and your energy levels are getting better. Thanks for the information you’ve shared it really has helped me. 

It is difficult to find the words and to fully understand what you are going through. My partner got me a diary as we thought it would be useful to write down feelings / thoughts during treatment but I only did Day 1 and Day 2 before I just put the thing in a decorative bookshelf. It was only ~2 months after treatment that I felt like writing down my thoughts and being more open about it with people, I just couldn't and didn't want to do it earlier. 

I agree, the only positive thing about this treatment is that is not more than 12 weeks. Apart from the first 3 days of each cycle I coped with it quite well in terms of sickness / apetite / headaches, but the fatigue was by far the worst and I couldn't get my head around how people could do more than 4 cycles. I was lucky I could do it as an outpatient and only had to go to A&E once (my first day due to palpitations), didn't have much complications during the treatment. Only the neuropathy got a bit scary towards the end of the treatment and we reduced the dose of vincristine to make sure I didn't lose as much sensitivity on my fingers. I think if I had needed a 5th cycle I would have probably gotten a blood transfusion, as I had a couple of days I couldn't even leave the sofa (Days 12-13 were the worst, high heart rate and oxygen saturation around 94-95% because of the red blood cell drop). But luckily I didn't. Living <1 mile from the hospital helped too as I could have gotten there quicly if something was wrong. 

RE work... I am also lucky I have a fully remote job since end of 2023 (I always say obviously unlucky with lymphoma but very lucky that I live near hospital and have remote job)... During treatment I managed to work a couple of days of the 2nd week and then the rest week (so about 40% of the time). But as I was new at work it wasn't particularly demanding so my case I'd say was very particular, it is not stressful and I don't need to stay long hours yet. Before this I had jobs for years where I had to be running between an office and a laboratory, working some evenings and night shifts and always under stress, so if I was still there I would probably be going back on reduced hours or part time. I have started visiting some clients about once a week, so back to being a bit more active at work. I hope you can get a progressive transition back to work and your employer is flexible with the situation, as it is a demanding job there should be some arrangements to make sure you get a progressive return to normality. 

But yeah, unfortunately it is all about patience. People say try to keep your mind busy reading books or learning a language or getting a qualification but to be honest I wasn't in the mood for any of that. 

I was recommended 'The Cancer Survivor's Companion' book as apparently it has some chapters which people find really useful when finishing treatment and re-adjusting back to normality. I can't recommend it yet as I haven't started it myself yet, but it might help. I don't know, I have tried to listen to some podcasts and stuff about people who talk about post-treatment and live with/after cancer but I get a bit anxious with those things at times. Each person finds different things more or less useful during recovery, I am still working out what helps. I am thinking of writing a personal blog relating my journey so other people in a similar situation can find that helpful - and that might help me too. 

Overall, I think it is just learning how to live your life when it's being turned upside down, and it takes time.