Bowel cancer treatment and side effects

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Bobs74

Chemo while living alone - anyone else?

Hi all, hope everyone had a restful Christmas.

Quick question re. chemo and living arrangements if I may....

Has anyone negotiated chemo (Capox :x: 4 cycles currently) while living alone? I did have somewhere to stay but Covid has made everyone a little scared I think and so that offer is no longer 'on the table' so to speak, as the people concerned are too worried about the possibility of passing it to me (and my specialist mentioned if the hospitals were in trouble and it came down to a choice between treating me and another person without cancer they wouldn't treat me).

Friends are worried to come and see me as they're mostly out working/mixing with people - so I'm conscious that I may have to do a fair percentage of this alone. I do have a couple of friends who work from home who have offered to stay with me on very bad days (of course I have no idea what to expect yet as I know it's all v individual) but I can't take advantage of their good nature so am aware there will be many solo days too. My partner works in a school and we don't live together so that's an issue.

I'm not looking for assurances as I know no one can give those - more reassurance I guess that there will be days in the 3 weekly cycles where it's possible to not be a burden on others! So experiences from those who have been through this while living alone would be hugely appreciated.

Thank you and Happy New Year :x::x::x:

Clancy1

Hi, open you are well. I live by myself and have done for five years. My youngest son lived with me briefly for three months at the very beginning of my neo ajuvent chemo. Following that I had two liver resection and one bowel resection followed by chemo. I looked after myself, and continued to live alone.
I am now going to have my 83rd round of chemo on NYE. On the whole I have been very fortunate and tolerated chemo very well, I have had the odd skin eruption, and the diarrhoea upsets, they are usually my own fault for defying the “do not eat list”. I am sure most of our fellow forumites will agree, listen to your body. If you need to rest and sleep, do so, naps are great. Take your prescribed anti sickness before you feel nauseous. If you can’t eat, drink, water, milkshakes, iced tea, anything really. Don’t panic, keep your hotline numbers handy. I have only told one of my neighbours that I have cancer, although we are all on a group chat, WhatsApp which was set up at the beginning of covid.
I do hope this helps..Oh, and I keep a bag packed in the hallway cupboard, just in case.:x::x:

Susie Ruth

I’m not being any help at all here really - just wanted to salute your incredible bravery. I am such a wimp - I cannot even imagine doing this alone, so I wanted to say how much I admire your courage. I hope your friends and family bring you comfort - wishing you the very best for the New Year - and after :x::x::x::x:

Clarice08

Hi @Bobs74 , I did 12 rounds of folfox while living by myself. My advice would be plan ahead (e.g. freeze portions of food for the days when you're too fatigued, place supermarket orders online well in advance to reserve the slots). Social media and youtube provided me with entertainment and escapism.

I'm lucky in that my neighbours in the building where I live are lovely. We have a whatsapp group, so they did run some errands for me (e.g. post office, as I didn't want to jeopardise chemo by getting exposed to covid at all).

I hope my tips help. Wishing you all the best, you can do it!

mountainwoman

Hi @Bobs74 I live by myself and had 12 rounds of folfox in 2017 and then again last year for a recurrence. It is different for everyone but I had a week of feeling rubbish and a week feeling better.Before each treatment I stocked the fridge up with easy to cook food (M and S mashed potatoe was my go to!). I always tidied up and tried to make my flat look nice (sometimes I bought flowers) so I was as comfortable as possible. I had phone numbers on hand and had a few people I knew I could phone in an emergency. I watched TV/films when I wasn't feeling great but made sure I arranged some social activities to look forward to during my good week. During the lockdown I met lots of my friends outside. I had to buy extra thermals and gloves etc. as the chemotherapy can make you sensitive to the cold. My sister bought me a heated jacket(it has a battery pack you charge up) so I was nice and toasty when meeting friends outside!
I hope it goes well for you!
p.s. I'm a little shocked that your specialist felt it necessary to talk about covid treatment choices 😡

Molly2me

Hello lovely @Bobs74 I don’t wish to alarm you as fortunately everyone is different, I couldn’t finish treatment after 4 days and was on the verge of hospitalisation, I was nursed by my husband. You’ve had some great advice of measures to put into place. Maybe organise things for difficult days and all those days that aren’t, are bonuses. Thinking of you 🤗❤️👍

Ali

Morning @Bobs74. I live on my own and was terrified before my first treatment especially after reading all the side effects that could happen. This affected me more than the physical side effects. Luckily my son stayed with me for the first 8 days but on the 2nd and 3rd cycle I realised it is only the first few days I struggled as didn’t fancy much to eat and was tired. I recommend you keep a diary of how you feel each day so you can report to Oncologist and also it’s useful for future cycles as I have been following a pattern. With me it was the worry that was worse but having the emergency number ( and using it) reassured me as they would rather you ring than leave it too late and need to be admitted. My dose was reduced and I had a break after cycle 2 due to severe diarrhoea. The reduction has really helped and I managed the last round ok.
I now only have either son or daughter with me for a couple of days and then I am Ok. I manage a walk every day even if I feel tired. It was the nausea I hated and lack of appetite so get plenty of snacks in. I also made smoothies and included a protein drink as well as fruit to keep my weight up.
Am happy to keep in touch if you have any concerns. I hope all goes well for you.

Ali :x::x:

Bobs74

Thank you all SO much! For both the posts here and the DMs. As ever, I am so grateful. I hope you don't mind if I stay in touch with everyone on here to help with any concerns or feelings of isolation while going through it? Have found myself getting very nervous this morning but I guess that's understandable. Yikes. Hard to know what to get in food-wise as no idea what I'll fancy (or not fancy!) We shall see. Thank you again for all the tips! :x::x::x:

Sea60

Hi Bobbie

I found soup a great stand by on chemo. Takes little effort to heat up and keeps in the freezer. Sue :x::x:

MysticLooRoll

@Bobs74 - even though I had my partner living with me during chemo, I found it an incredibly lonely experience. No matter how lovely my partner is, it was hard for him to know how the drugs make you feel. I kept a diary and it has helped me work out what to expect on each cycle. I kept well away from physically visiting people due to possible infection risks and I was just so tired. I was not always up to seeing people.

It’s also hard to plan ahead as you never know how you will feel on any one day - just do what you can, have lots of nice food you can heat up/prep quickly, nap when you need it, and be gentle with yourself. Have a bag ready in case you need to go to hospital and keep the cancer treatment hotline number handy! It all makes a difference.

Take care and just remember, one day at a time. It all brings you closer to the end! 😊

Bobs74

Thank you @Sea60 and @MysticLooRoll! At the risk of sounding stupid (nervous brain not working properly atm!) what did you have packed in your hospital bag? And what did you wear for infusions please? Love from Not A Clue! :x::x::x:

MysticLooRoll

@Bobs74 - I’ve put below a couple of threads that may be of help to you. The thread on chemo - what you wish you had known (see the comments on 2nd Dec as it gives a lot of good advice in particular) and also the BCUK advice of what to pack for hospital bag. I just have a bag ready for a couple of nights in hospital so in case I ever need it, I can just grab it and go. You never know when it may come in handy, but hopefully you will never need to use it. You don’t need all the things on the list they mention for hospital, but 2 things you should remember is a long charging lead for anything you need to charge (such as a phone/iPad) as some hospital beds have a bit of distance between the bed and the charging port. Headphones are also handy to have!

As for what to wear on the day you have chemo - it all depends on whether you are getting infusions in your hands, arms or through a different method (for instance, a port which may be in your chest - speak to your nurse/oncologist about what’s being planned for you). Just make sure you aren’t wearing anything too tight or that can’t be rolled up if they need to try a couple of different points for a good vein. I had infusions in my hands, so just wore layers to keep my chest and arms warm through the treatment. I had gloves on to keep my hands warm until I got into the chemo ward, then took them off and put my hands in warm water to get the veins up to the surface. This is a common thing. Make sure you have enough warm clothes before you leave hospital after chemo - some treatments (such as CAPOX, which I had) can make you highly sensitive to the cold and that’s not fun.

Any further questions, feel free to PM me. All the best!

community.bowelcanceruk.org.uk/...-2-12-21-to-include-helpful-hints

www.bowelcanceruk.org.uk/...nt/surgery/preparing-for-surgery/

Bobs74

Thank you @MysticLooRoll! Apologies for late response, I wasn't really on the computer yesterday. Had my first infusion and started the Cape tablets today. I have my partner here for the first few days before he goes back to school (then we can't really see each other due to Covid) which has been a godsend but I am managing. Will DM you re other bits and pieces so as not to clog up the board but thank you for those two threads! :x::x::x:

jonsellers74

Hi @Bobs74

I had surgery to remove a tumour from colon which left me with a stoma and then 4 cycles of chemo from August to end of November. Mid december given the good news that treatment was over.

I live alone (well house share with non family).

During the chemo I stayed mainly on my own in my own room, not because of covid or any risk of infection I just wanted my own space and to deal with the side effects in my way.

I got very fed up with people giving me tips who had no idea what I was going through and found this community amazing as well as a support group I met on line through Bowel Cancer UK (6 week course). Unless someone has been through it and has experience to share I found their words pointless and do not get me started on people saying "stay positive" lol

In terms of being on your own during the chemo please do not fear it. It gives you time to think, read (got through so many books) and do research and talk to people online. I had my girlfriend who lives nearby by as a TA in a primary school contact was limited as she did not to give me anything. I did get covid during cycle 2 which meant the cycle stopped but cycle 3 started with no problem and things were not too impacted.

I also managed to meet my brother outside for a walk as he is a dog walker by trade. this was a good way to get out and exercise a little when I could (fatigue was the main issue in meeting up more)

if you need anything just shout, happy to help and chat more.

If you have Facebook there are some good groups on their as well especially Man Up to Cancer - The Howling Place. Its a American group but good support and always brings a smile to my face.

their motto is #KFG - i will let you research what it means but I like it.

Take care and shout if you need anything, best wishes for your continued treatment and stay strong.

Jon

Bobs74

Thanks so much @jonsellers74 - I think we're the same age, I'm also a 1974-er. Not a man though, my handle is a bit confusing lol. really appreciate your help and would love to stay in touch. My partner also works in a school so, now he's back, I won't see much of him for the next few months but we'll be in touch virtually and hopefully walks etc so got to focus on the positives. Am managing this week despite the many and varied side effects - but no idea how much worse they'll get as we go on. All a learning curve! And yes, very fatigued generally, i must say! Keep falling asleep! I have lots of books to read and enjoy some nice peaceful things like knitting and jigsaws anyway so got the quiet hobbies all lined up...! :x::x::x:

AMM31

Hi @Bobs74
I live alone and had 6 months of chemo after my surgery. I had a friend who phoned on the chemo day to see if I was ok. Other than that, I was completely alone. I had a helpline from the hospital for problems, but think I only used it once. Mostly got through it with the help of the forum.
Best wishes
:x:

Bobs74

Thanks @AMM31 I've had a friend stay the past few days and am now about to test out solo living for a bit. I definitely struggled for the first couple of days after the infusion but today has been better. Hard to know if that pattern will continue or if each cycle will be different, but it's great to know others have managed it. Thank you, hope you're doing ok now! :x:

belinda66

@Bobs74

I lived alone through diagnosis, treatment and follow-up appointments and still live alone. I had Capecitabine tablets at home and was terrified beforehand - I even envied those having chemotherapy at hospital because they had qualified staff around them. What scared me was, that if I had a bad reaction when I first took the tablets and passed out or became incapacitated there was no one around to help.

With hindsight I can see that I grossly over-reacted and did silly things like putting hand gel all over the house. It was alright and side effects can be dealt with and if it gets too much, treatment can be stopped. It is amazing what we, as human beings, can deal with.

Bobs74

Thank you @belinda66, I'm finding this cycle ok to manage on the tablets. I struggled for the first few days post infusion. But of course we are scared - we have no idea what to expect! And also whether it stays in the same 'pattern' from cycle to cycle or gets worse... it's the fear of the unknown and I think that's totally fair and understandable given the fact none of us have ever experienced this before and we're scared. I really appreciate you coming back to me - are you ok now? :x::x:

belinda66

@Bobs74

I am sorry for taking so long to reply. I am okay now and thanks for asking. Hope you're okay.

I was discharged last April but have a colonoscopy in 2025 but have ongoing issues with my diet. The funny thing with cancer is that you never know how it might go: others have been diagnosed at a more advanced Stage than me (mine was Stage 2 colon cancer fortunately) but returned to a normal diet soon after first surgery. I have never been able to do that after nearly 6 byears: for example, if I eat a high fibre meal I can't go out for a long walk or anywhere not close to a toilet. I have to plan what I'm going to do and eat, or not eat, accordingly and can't be spontaneous for some activities. It's just one of those things I suppose and everyone's body reacts differently.

Bobs74

@belinda66 gosh that's frustrating for you! I've been lucky in that department I guess which I hope remains the case but of course, like anything, we'll have to see as time goes on. I think I'll always be terrified of recurrence but I imagine that anxiety is fairly normal. Sending love and thanks so much for responding. :x: