partner wants to give up

[ElderScrolls]

hi everyone, partner is on his 3rd chemo session. He’s starting to talk about giving up as it’s doubtful he’ll return to work. He’s 52, lost loads of weight already and is no longer being active. After 1st FLOT session he had 2 A&E visits. A nurse told him that it’ll take 2 years to recover- not the best thing to have said! Any ideas for help?

[whasler]

FLOT is brutal. I had four rounds in May/June 21, Op in Aug and the four more rounds in Nov/Dec. I was 57 when diagnosed. The chemo as I'm sure they tell you aims to reduce the size of the tumour before the op and washes away any remaining "invisible to the eye" cancer post op. In 2021, we were in and out of covid so I didn't want to go out. Before chemo was hard, after op tougher as your brain keeps saying why do I need it? They said they removed all the cancerous lymph nodes. You lose hair and weight. I was a runner till I had the op and have never gone back. It's undoubtedly a life changing operation and you'll be tired of hearing this but it can and does get better. I now swim, walk, play golf, do pilates. I'm back at work. I know others less fortunate and some who are stronger. Support him and allow him to vent when he needs to. This operation is a bugger and associated chemo doesn't make it any easier. If he's on FLOT, he must be fit and strong enough to endure it.

Finally investigate oesophageal support groups. We have one for patients in all stage quarterly in Portsmouth and I set one up for younger patients (under 60 so I'm now over age!).

Good luck

Will

[hunsdon]

hi I am 12 years now it is a hard road but dig deep into that pocket of strength as you are so worth it as we all are !! You will get there x

[liz_crisp]

Hi i was 48 when i was diagnosed, single mum and thought it would be simple. It is a shock and treatment is at least 9 months roughly. after my first chemo I went skydiving (a birthday present) and then the steroids stopped, i was in hospital on and off for two weeks while they changed the chemo i was on. After that I was often hospitalised after the 1st dose of each round and violently sick for a week but it improved. The chemo after the op was brutal and it is hard but it does get better, I lost alot of weight but i expected too and just eat what you fancy through the treatment, all that matters is that you are eating and drinking something, i couldn't stomach the build up drinks but a homemade version made with slimfast, cream, thick youghurt, and sometimes icecream did a similar job and was much easier to stomach. Weight gain is slow after treatment, s it took a few years to get it back on. But that was 15 years ago this week. It is life changing, it is an ongoing process but its worth it. Takes a while to get your head around it, The nurse is sort of right but almost a year of that is treatment it does depend on the op , keyhole or open, what they actually have to remove, etc. Its a lot of learning how to manage your energy and being kind to yourself. And sometimes doing what you are told to do, not always easy for a rebel like me.

Ps I Didnt return to the work i used to do but i do do other stuff now. Talk to Macmillan about your rights if in employment. If you are self employed look at benefits for the short term you should get ESA or PIP even if you do have some savings look at insurances

I am grateful for being here still even if life has changed it was worth the struggle and there have been alot of smiles and friends made along the way hugs and love lizzy

[ElderScrolls in reply to liz_crisp]

Thanks so much

[LarryLamb69]

Hi, unfortunately the nurse was being truthful in this case, I,m 55 and was diagnosed at 53, FLOT is a bugger, but at the end of the cycle, he may have a period where eating once again is possible, I did for sure.. the period I felt "normal" more or less, I used that time to gain weight which is needed for the next phases of treatment, is took a degree of being regimenent about id 5-6 times a day, but if money allows, it can be things like 1000 calorie milk shakes from places like Kaspers desert shops..post surgery, it is recovering before chemo again...I used to be a Royal Marines and cyclist, doing around 100 miles a ride, so this factor of being unfit and not the person I was bothered me..still does to some degree, but I now cycle again, put myself in with a trainer, to gain muscle..hopefully weight...it will take discipline, but it is so,able .as a indicator on weight I started at 69kg..now 55kg..my lowest was 52kg..I am 6 months past my last chemo, time is key, but it does get better, I lead a full and normal life..I never stopped going to football except for 3 weeks over surgery ( even during chemo) I now go out to eat, holidays booked, and I was only off work (a desk job) 3 weeks...so not all doom and gloom, but he has to stay positive with you encouragement, it will be hard for you as well...stay💪..not being so is unfortunately a slippery slope that I can only imagine would be hard to recover from....all the very vest

[ElderScrolls in reply to LarryLamb69]

Understand and many thanks

[KfromUK]

hi

I was 52 when diagnosed and the chemo, radio and surgery are tough. However, I’m now 6 yrs post op and have steadily established my new normal.

The realisation of the impact of my diagnosis was as difficult to accept as the treatment but I now have a good quality of life and feel pretty good for a woman approaching 60.

I returned to work about 6 months post op and have changed my exercising from high impact activity to walking, swimming, cycling etc

The diet adjustments are tricky and different for everyone but I found protein foods helped me to regain a good body weight and energy level quite quickly.

I’ll be honest and say that once or twice I too wanted to give up , but with time it really does get better.

I didn’t attend any help groups but I wish I had. Even though each of our journeys are unique, I think it’s helpful to hear hints and ideas from others.

Remember to take care of yourself too. This will be an emotional time for you also.

I wish you both all the best

K xx

[Deeedals]

it is a tough road but he’ll get there. I can’t add anymore to the wise words said by the regulars on this site.

It’s worth fighting and enduring the chemo because life does get back to a new normal.

I’m almost 4 years down the road xxxx

[DonegalDreamer]

Hi,

I had my surgery one year ago this week. Just a couple of days before I started treatment (FLOT, Ivor Lewis surgery & more FLOT) back in December 2023, my wife and I were on a short cruise that we had booked and were just about able to squeeze in before first chemo. While on board, we happened to wander into the bookings office on board and looked at future cruises that Cunard offered. We found one that we really liked and, after much deliberation, put down a deposit. 2024 was, without a doubt, the most difficult year I have ever had. FLOT is so tough and the surgery is brutal (I was 8 nights in ICU after having complications) but this holiday was the light at the end of what was, at times, a very dark tunnel. There were times when I did wonder what sort of madness possessed me to book this trip when I had no idea what course my treatment would take. But my wife and I are currently in Santiago, Chile and tomorrow we board our ship for a 31 night cruise back to Southampton. So yes, you and your partner have many tough months ahead but there can also be good times to look forward to as well.

[Magicwands]

I finished treatment just over a year ago (Jan 2024). It was a long haul and a bit of a rollercoaster but I've mostly returned to doing all the things I did before.

Everyone has different ways of coping with the diagnosis and treatment but speaking to others who have been through the same experience can help.

The OPA website has a buddy scheme and also online and in person meetings to support patients. opa.org.uk/what-we-offer/

Maggie's centres and Macmillan offer financial advice and emotional support too. Maggie's will also support you, and other family members, so don't forget about yourself. You can also reach out to the nurse specialists, as they will also be able to advise you both. All these charities and groups are there to help in exactly this kind of situation.

Wishing you both all the best.

[Cosmobabe]

Hi there!

I just wanted to say well done to everyone to have beaten this.

Everyone is unique.

I was diagnosed when I was 46. It was a shock to the system. Managed 4 FLOT chemo, surgery and 3 FLOT after surgery. I was bedridden after the 2nd FLOT chemo so I tried the 3rd chemo and then decided not to do the 4rth. I was in hospital for the chemo after surgery and even tried experimental drugs for sickness but nothing helped.

My journey was horrendous. I basically toured the hospitals in Glasgow. I was in and out of hospital in every part of my journey and now I can't stand the sight of them.

It hasn't been easy but I wasn't going let this stop me from attending or arranging my kids weddings. You both need to have something that will make you strive to beat this and with a positive attitude you will get there in the end.

It will be a struggle. I was really low one Christmas eating various different sickness meds and feeling sorry for myself so I called Macmillan. This call really helped me even though it was cut short by a call from my gp.

Hang in there. There is a light at the end of the tunnel.

Take care Cosmobabe

[AussiePeterInLondon]

Hi,

All I can say is that everyone is different. I was 46 when diagnosed - T1bN0M0- Poorly differentiated Adenocarcinoma of the Oesophagus. MDT of Gastro, Oncologist and Surgeon suggested going straight to surgery - I had an Ivor Lewis In early 2015. They graded me T3N0M0 after surgery. They took a wide margin due to my age.

They gave me a bit of time to recover from the surgery and then whacked me on 6 rounds of ECX - tablet form twice per day and 1 day a week in the ward on a drip.

I was still on a feeding tube but not coping with the protein (think it was pea-based) and was quite nauseous from that and had lost a lot of weight.

If the surgery was rough the ECS was brutal. The ECX tablets were literally making me throw up 30+ times a day. The day in hospital was super tough - cisplatin was knocking me around in particular.

I made it through 4 rounds (almost 4 months) of chemo and eventually told my Oncologist I wanted to stop - could not face any more of the ECX.

I've made it to 10 years - went back to work after 6 months - travel quite a bit for work - diet has improved after loads of dumping issues - I don't regret stopping the ECX when I did. However, not sure how I'd feel if it had come back or spread.

I think this is a seriously personal question. What was right for me might not be right for your husband. I agree with the comments about support groups - if they are positive and forward looking then they are awesome. I have attended 1 or 2 support groups where all the attendees did was complain about the impact on their lives..... It's a massive, life changing procedure and is with us for the rest of our lives (pain, discomfort, restricted diets, sleep issues, bile reflux, etc). But, the alternative is worst !

[Bards]

I was diagnosed age 54, and although my Chemo regime wasn’t FLOT (pre-op was 5 weeks daily Radio and 5 rounds of Carboplatin/Paxotillin Chemo) my 10 cents might still be helpful… My negative effects from that were less than I expected, but then in my case my recovery from Ivor Lewis Procedure was way more challenging and debilitating than I expected for especially first three months. Weight horribly low, quality of life fairly poor.

Obviously I couldn’t’ ‘give up’ as treatment was a fait accompli, but I did feel myself wishing in early stages after discharge ‘give me my tumour back - anything is better than this!’ which is maybe similar to what your partner currently feels. Levels of energy were awful, and ability to parent a kid enthusiastically not great, even without work.

In my case I was given 18 months for final 95% Recovery. On the one hand thinking negatively ‘Ruddy hell, that’s forever - they’re just saying that to delude me into thinking a decent recovery will happen’ BUT BUT BUT now 16 months post operation what it really meant was not a negative ‘it’ll take forever 👎’ but rather ‘I’ll keep on getting better for a long time 👍’. I’m really pleased I stayed with it and committed to active fitness side of things (cycling & fitness classes from a Medical Referral’. Feel this has helped enormously both physically AND mentally - has given me some Agency over it - not just a passenger on the good ship NHS wincing through a porthole. Took quite a bit of strength at times (which I take little credit for - largely strength and encouragement donated by some wonderful folk around me).

Bottom line - in my case was indeed a long road. But that’s good news - the road leads away from the dark places we’ve probably all found ourselves in. With some encouragement and discipline zI’m probably not the only one who now (despite the final outcome at various stages) finds that with a new respect for health, fitness & wellbeing I’m now AT LEAST as capable of work etc at post-treatment age 56 as I was pre-treatment age 54.

All treatments, and responses to, are different and I may well have babbled but PLEASE HSNG IN THERE and trust the Medics in their ‘net life benefit’ opinion. It IS hard at times, but…., ❤️

[Magpie63]

There’s no doubt that chemotherapy can be incredibly hard. Hard for the patient and hard for partners supporting them. It’s more difficult than many treatments because every session your partner has to choose to go through all the horrid effects again. And it does take time to recover but it’s a case of keeping an eye on the prize - at 52 your partner is on track to be cancer free and very able to crack on with a life that will be back under their control by 54. Two years sounds a lot now but things improve - they don’t stay like they are now. Sometimes improvement is slow but well before 2 years life will have a glow again.

[andyjw]

Hi - I began my 4 rounds of FLOT chemo around September 2023 and there’s no doubt that it can be incredibly hard, both for the patient and also for partners and family supporting them!

It’s more difficult than many treatments because every session the effects seem to get a bit worse, but my Doctors managed to balance the side-effects with medication (steroids) to reduce the impact and the really encouraging aspect was the noticeable improvement in my swallowing, that clearly showed the cancer was shrinking. Yes, it does take time to recover but it’s a case of keeping an eye on the main goal and at 52 your partner is on track to be cancer free and very able to crack on with a life that will be back under their control in a couple of years.

I had my surgery a year ago and am now still recovering from the experience and taking each day as it comes - some are worse than others, but recovery from both the FLOT and also the surgery is a long process, but so much better than the alternative!

[purplekey]

The Mcmillian Nurses were so helpful in getting me through the very difficult chemo, providing support and medication for extreme nausea during their home visits. I couldn’t have got through it without them. The hospital or your Gp can arrange this for your husband. ❤️❤️