Moving on from bowel cancer

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lisapierce5208

Expecting things to go back to normal

Hi,
I was diagnosed with stage 3 bowel cancer in April this year. I had emergency surgery to remove my tumour and had 4 rounds of capox chemo. A lot of people have praised me for being so positive during my sickness. I have two children so I tried to stay as up beat as I could but I was very sick with the chemo. I finished my chemo at the end of august and I’ve just recently went back to work 2 weeks ago. I didn’t get any phased return and to be honest I kind of feel like everyone thinks things should be back to normal now. I get very tired and I have bad numbness in my feet. I am now worried I’ve rushed back but I don’t feel like I can come out on the sick again. I am very much a people pleaser and put on my smile as soon as I walk out the door. I hate to let anyone down. I am sorry for ranting or moaning I just hope that there is someone out there who understands what I am going through and can give me some advise? Does anyone feel emotionally like they have a delayed reaction? I find myself sitting thinking back over this year wondering did that all really happen?

Ali

Hi @lisapierce5208 sorry to read your story. Can’t imagine going through all that when you have children to care for as well. I am on my own and that is difficult enough. The chemo can take months to recover from so I have read so that could be why you feel as you do. Could you see if it is possible to work shorter days at this stage? Would it be easier/possible to work from home? Your employer has a duty of care so should be able/willing to make adjustments for you. It’s worth asking. It’s one thing feeling ok at home but quite another to feel ok when working. You did well to get through the capox treatment. I am due my 3rd of 4 on Thursday so am half way through. Can’t wait for it all to be over and on the road to recovery. I wish you all the best and hope things sort out for you on the work front.
Ali :x::x:

Wegwe

Hi @lisapierce5208, we were diagnosed and had treatment at more or less the same time. For me, things definitely aren’t fully back to normal yet, although I would really want them to be. I keep getting warned by people (including my employer) not to expect too much and not to rush myself, so that would seem to be a little different from your situation. Was there a reason you did not have a phased return to work?
I never fully stopped working and have been gradually building up working hours since mid September. I’m now at 80% of my normal hours and doing fine, but I think going from 0 hours to 100% at once would have been really hard.

Baxter2

Good morning @lisapierce5208 and a warm welcome to the forum! I'm glad you found us!

Well done you on having your surgery, completing chemo and getting back to work! Phew! What a year it's been for you! It's well recognised that the post treatment phase is challenging for so many people. Cancer diagnoses are life changing. Maggies used to run a course called something like, 'moving on' specifically for people like you. If you contact them, I'm sure they can advise if there are any such courses running. They will also probably be online to making it easier to access when your working perhaps? I'd also recommend you browse Penny Brohn cancer charity website as they have lots of free online courses and sessions running as well as providing 1:1 telephone support.

In summary, I think you've done so well getting through all of this with little children and I honestly have so much admiration for people like you! Cut yourself some slack and seek some support to help you 'move on' with life again.

Sending lots of love,

Karen 💚💛❤️💜💙

Liz Blakelands

@lisapierce5208 Hi you are doing so well to have coped with the diagnosis, op and chemo so well. And now you are back at work. And feeling very tired. I understand the wanted to please people and to get everything back to normal but I think you need to be kinder to yourself. Think about what you need, not what everyone else expects or needs. It takes a lot of time to recover fully. Also while you are ill you are 'dealing' with it. When the treatment finishes you then have the time to go over what has happened and how it has affected you.

Please talk to your employer and just say that you are getting very tired and can you switch to a phased return.

You say that you feel that everyone thinks it should be back to normal by now. Probably people who have never had a serious illness think that but they are wrong and actually it doesn't matter what they think. While you have been dealing with everything they have been getting on with their lives. It's what you think that matters. Trust yourself and your own feelings.

Wishing you all the best
Liz :x::x:

Jane39

@lisapierce5208
Another warm welcome from me.
So much has happened to you in the last year and another well done for getting through it and caring for your children.
As Karen has said it is well recognised that many people really struggle after treatment has completed and she has given you some excellent advice. I remember only too well after my ‘mop up’ chemo post surgery being discharged from oncology and feeling totally lost, after a year of so much attention.

I would also suggest having a chat to your employer and see what they can offer to support you.

Take care
Jane :x:

momentbymonent

Hi @lisapierce5208 I think the period post treatment, while great that you are out of treatment itself, is emotionally very difficult. You have probably just been in survival mode since April and trying to keep it all together for your kids. It's the After when some of the enormity of it hits you, and that's just when everyone else thinks you are all ok again and wants you to look forward. From a personal point of view, I think the fact that I kept my hair from chemo meant that when I went back to work I didn't look like I'd been I'll, and it took after four days for everyone to forget what I'd been through and expect the same from me as everyone else. That has been hard. I've found that giving myself a break, even if no one else is, is really really important. And along with the excellent Penny Brohn mentioned above, there is also a great charity called Life After Cancer who focus on just this period. They run virtual support groups and coaching to help you adjust to this next period. Wishing you the very best :x::x:

Mrs ALS

Hi @lisapierce5208 and welcome. My children are grown up and I'm retired but there is no way I would have coped going back to work after I completed chemo a year ago. I still struggle with fatigue now, so I absolutely take my hat off to you for going back so quickly. I think people see you at work and 'functioning', so assume you must be ok. Unless you've been through a cancer diagnosis and treatment yourself, it's hard to understand. Would it be possible to reduce your hours, even on a temporary basis? You really need to put yourself first here, especially when you have children depending on you too!
Take care and don't be afraid to ask for help if you can.
Lots of love, Louise :x::x:

louise28

Hi @lisapierce5208 what you are feeling is totally normal.

I have two small kids, a baby and a toddler when diagnosed. It was odd. I went into autopilot and got on with it all and my life was a whirlwind of appts and stuff to do. Then remission came, I went back to work and it was like looking in the rear window and seeing an accident that I had been involved in but not having any memory of it and how I had come out alive! That's the only way I can describe it. All the well-wishers moved on as I was back to normal physically but I didn't feel the same. I did avail of a free counselling course, took up some new hobbies and it all helped. Gradually cancer took up less of my thoughts. Weirdly even tho I had a recurrence recently the tools I learnt with counselling have helped me to cope :x::x:

Cyclo64

Hi There @lisapierce5208

I have to say you sound exactly like myself in certain aspects. I got Diagnosed ( stage 3 ) in the Jan this year had radio therapy / Surgery in May followed up with Chemo in July and I finished in September. I was fortunate that through most of that period I was working from home but I went back to the workplace two weeks ago I am lucky as it is a phased return ( my company have been brilliant all the way through the process ).But when I finished the Chemo the first week post chemo I wasn't too bad with the Neuropathy and other side effects but it got worse weeks 2 and 3 then it faded again. Being fairly active person I was out on the bike etc. ( ok I went for the bike training big style ;D) but then last week the numbness hit my feet ( it keeps coming and going ) but I found it both scary and frustrating as I didn't expect it and I thought I was through it. ( typing this with numb feet now )
Then doing the Dr Google stuff I found that the recovery from Chemo can take months and flare ups and various issues can manifest themselves during the recovery process but the human body is an amazing thing and it is going to take time. Just like yourself I am a people pleaser ( or so I have been told ) and have kept a positive outlook ( or tried to ) so I know it is hard to come across unhappy but you have to think about you.
I would say go and talk to your HR department to see if they can help you, do you have any Occupational Health support ? Not sure how big your company is but some do have an Employee Assistance Program.

Also yes it all seems surreal and some days I still cannot get over the fact that I got diagnosed with Cancer and it doesn't feel quite real at times. I also see it as an endurance event ( I always use sport as an analogy ) and I have got one part of the process left ( stoma reversal).

I found in the right surroundings with the right people I try now to be open what I went through as you cannot take it all on your own shoulders and I am not even looking for feedback it is probably more of a case of saying out loud I have gone through this and got through the other side and there is still going to be trials and tribulations along the way ( anxiety / frustration and of course not forgetting the numb feet !)

Plus I drop into these forums when I feel unsure as they always help because in general someone has always been there first and the advice and support here is outstanding.

Good luck and take care Paul

Forum user

Oh lovely @lisapierce5208 I have t read the other responses as for me your wonderful, doing all of this and with a young family, my first instinct is that it’s too soon as my life has never returned to where it was, or should I say, I was! Reflect a little on what you would say to a friend or work colleague by asking that question, I’m sure you’ll come up with the answer because you would want them to do the best for them and take time. There is no judgment to be had in saying it’s too much too soon, you are just as special as anyone here and the emotional aspect of this journey, is huge. Baby steps are be kind to you. Thinking of you, strong reassuring hugs :x::x::x:

jupiter20

Hi @lisapierce5208 - thanks for sharing your story and for making it back to work.

I have been in a similar situation. Also diagnosed with stage 3 last year and completed chemo earlier this year, went back to work first at phased return in May and then worked my way back to my usual full time hours in a couple of months. On the 'outside' I am fine, you wouldn't even know I'm going through this and my anxiety is now going through the roof as my annual CT and colonoscopy are coming up in a few weeks. It is like waves of PTSD to be honest... every once in a while I feel the waves crashing in on me and some of there times I forget. I try to reflect and take it one day at a time but it's not always easy.

We are here for you and in this ride together. I get where you're coming from.

lisapierce5208

Hi,

Thank you everybody for your amazing replies!! I didn’t think anybody responded until I checked my junk folder today. I am blown away. You are all incredible. These forums have gotten me through some of my darkest days and this was the first time I have plucked up the courage to ask for advice. I had a breakdown two weeks ago and cried the whole way home from work and had to ring Macmillan for some help. so I spoke to my employer and I have dropped a day. But I do feel like because I put my make up on and I look ok people expect me to be ok. I do not feel ok, emotionally and physically. My feet are terrible I can’t feel my toes and it travels as I walk. I had complete numbness in my feet yesterday. I feel like I need to come back out again and take time to myself to heal and recover and I have been advised to do that. But the guilt is awful. I honestly just want to thank you it’s so good to know im not alone in feeling all of this. Because I know that people don’t understand if they haven’t been through it themselves. Im the first person in my workplace to have cancer aswell so it’s hard for them aswell to know.

Cagz

Hi @lisapierce5208

I’m so sorry to hear about your breakdown, dealing with cancer is just so hard. I completely understand what you mean about just because you look ok, people think you are ok. I’ve had 4 cycles of Capox, 5 weeks of chemo radiotherapy and am due to have my operation on Thursday. Apart from the amazing support from family and friends, the one thing that has really helped me is yoga and mindfulness. I wonder if you can find a time in your day to give this a go? I follow Sarah Beth yoga on YouTube, great for beginners and experienced yogis alike.
Try not to feel guilty about taking time for yourself, it’s so important. No one can pour from an empty cup.
Please take good care of yourself, you deserve it after everything you have been through.
Lots of love and hugs
Caroline :x::x:

Lucy118

@lisapierce5208, you’ve had some great advice already. However I just wanted to add I have trouble with my feet too, following chemo. I find wearing fluffy warm socks helps. Hopefully they will continue to improve too over time. I’m glad you’ve dropped a day from work too. That will definitely help. It takes our bodies so long to recover both emotionally and physically. Lots of love :x::x::x:

Wegwe

@lisapierce5208 sorry to read you are having such a hard time, both physically and emotionally. I’m not a specialist, but to me it sounds like you are still demanding a lot from yourself by only dropping one day per week if you’re still struggling on two fronts. I may be projecting my own experience too much, but I found that having one day off work was/is what I need to recover physically (by just sitting on my couch doing nothing, but also going out for walks and exercise), and not V much more than that.

Stella 2020

Glad you have dropped a day per week @lisapierce5208 . You have to put yourself first. It is better to start slow and gradually build back up. If you take on too much, it will not only stress you out but also destroy your confidence. Is it possible to do three days a week instead? I am doing two days per week right now, in a few months time I will move to three days per week , then eventually to 4 days per week. Is it possible to negotiate this for yourself? Take care :x::x:

Mark McC

Hi @lisapierce5208 , sorry to hear you’ve been struggling. I was diagnosed with with mid rectal cancer in November 2020 which involved chemo, a low anterior resection of the bowel and an ileostomy reversal late November 2021. For those 12 months I always had the the next infusion, COVID swab, MRI, CT, blood test, colonoscopy, consultation or surgery to focus on and occupy my attention. It was only when I didn’t have any of those things to focus on that the pent up emotion hit me, the magnitude of what had happened, so I think delayed reaction is perfectly normal.

kform213

Thank you @lisapierce5208 for sharing your story. Ive come on here for just this. My husband got diagnosed last March with stage 3, he had surgery and now has a permenant stoma and then chemotherapy which ended in sept and he went back to work at the beginning of Oct on a phased return. He actually ended up being off again as they hadnt sorted out the toilet for him to change his bag so he got another 4 weeks off and that was a blessing a disguise. He had the emotional turmoil of the situation as he thought his work were doing their best for him to get him back but he when he went back the second time, he realised how ill he still was the first time. Fast forward to Jan 2022 and very similar to you, people stop asking, he has numbness in his feet that stops him doing long walks and he suffered with fluid behind his eye. He is also quite down and worries massively about the cancer returning. Ive suggested counselling but he wont do it but I really think it would help him process what he has been through and give him coping skills for the next 5 years of scans and tests for his check ups. Rather naively I thought we woukd be grabbing life with both hands but we've both been left shell shocked and I worry about him worrying 🙈 :x: :x: