Bowel cancer treatment and side effects

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hev

Anxious -lead up to operation

Hey everyone
I have reached being couple days away from having tumour removed and as many of us been through- the appointments/ hard wait for results/blood transfusions/ ct scan/colonoscopy and chemo
This was always the goal to get to but I am isolating at home as family moved out-
I’ve kept myself occupied with house hold jobs but today my thoughts are running away with me- every process I have treated like ticking off a box which has helped me keep on top of this journey- but now it’s hit me that after operation a new journey begins in that what is removed will be investigated and then decisions about future treatment
I feel I am stepping out of my box ticking journey- any advise would be greatly appreciated
Hev

sal28

You can do this I was exactly the same just take one day at a time I know it is easier said than done but you are just behind me on your journey we can both do this with the support of our family and friends and this forum :x::x:

MysticLooRoll

@hev - I am going to echo what @sal28 says. Take one day at a time. The operation and recovery from that will keep you busy! There are so many different parts to recovery from the operation that (if you like box ticking) you can break them down and work on them like that. For instance, getting back on your feet and going for a small walk after the op. Making sure you get about but don’t overdo things. Getting enough sleep and keeping hydrated. Working on your diet and slowly introducing things again that you want to eat. These are all daily little challenges that are part of recovery. It is a slow process, but take things at your own pace, talk to your specialist team if you are unsure and keep on posting here if you need advice. Feel free to message me if you want a friendly private word.

Take care and I wish you all the best for the op. :x::x:

Mapledog

Hi my operation is a week today, I am very good a going through the motions & tick boxing but I totally get what your saying, maybe getting ahead of myself as I need to do the injection in my tummy first……
I believe mysticlooroll hit the nail on the head we will be busy recovering ticking boxes about a whole new set of achievements
I send a massive hug

hev

@Mapledog @sal28 @MysticLooRoll
Appreciate all comments :x::x:
I’ve very much used the tick box through last 5months- but now operation less than 24 hours away I can feel myself running away - I think due to isolating my family have moved out and to be honest I’ve been fine being alone as In contact with family but as much support you have the operation is a journey you do face alone @Mapledog i know about the self injections in tummy is this procedure after BC surgery?
I am ok about operation it’s the lead up as I know my WCS will overtake me

MysticLooRoll

Hev - I know the anxiety you mean. Listen, take it one step at a time. Get your stuff ready to go in. Make sure you have nice things in the cupboard and freezer for when you get home. One step at a time. Deep breaths. You have got this. 👍

All the very best :x:

MysticLooRoll

Good luck with the op :x::x:

Josianna

Hi Hev,
(Only just seen your post, otherwise I would've replied earlier) You have probably had your op by now! As everyone has said, just take one day at a time and try not to get ahead of yourself, your imagination will run riot and it's not helpful. We all do it at times, I was the same and I'm still working on trying not to do it! Put all your efforts now in to recovering from the op and follow all the advice given to you by the nurses and doctors. Don't over do it, take it easy. With each day you'll notice a small difference in how you feel. Each of those small differences will add up over the next few weeks. I had my op just over 4 weeks ago and today I'm being assessed by the rehab team in preparation for starting the exercises again. You'll have the odd 'down' day but it does get easier Hev. You'll be fine too @Mapledog Jo :x::x::x:

hev

@Josianna @MysticLooRoll thanks for responses-
Catching up on what seems like months ago
Yes op done!!!! I had it done Tuesday 3rd may- operation went well and for 2 days in hospital I was text book-moving after op/ had catheter out/ doing breathing excercises/ and visiting bath room/ getting up to wash so all looking pretty good but felt differently - couldn’t eat as didn’t want to and can’t say felt unwell but just not right which was then my temperature shot up and with pulse increasing too(I have extremely high pulse rate when in stressful situations) but this caused concern- had ecg.
Had chest :x:-ray. Decided to put me on anti biotics IV and had ct scan.
Then potassium level low and my kidneys not functioning as should- looking back now seems like dream and although it was me there I now feel it was someone else with me observing.
Although my bowels opened not long after op things weren’t quite right.
I then started to feel very sick and throwing up very dark green bile in huge amounts- this continued for couple days and 4th day after op was suggested had tube up nose down to gut to help clear. This was not pleasant but was not it would stop sickness. Extremely uncomfortable and this stayed in for 7 days- during this time was still walking around and visiting bathroom but could not eat just sips water.
Continued to be sick with the tube so stomach :x:-ray booked where you take a aniseed solution(not nice) wait 4 hours to be xrayed - this shows journey of fluid from mouth to bowel - in my case it was inconclusive as reached stomach but then showed not much travelling to bowel. There was reluctance to remove tube as it may need re inputting and thought of that terrified me so it was left in.
At this point I can only remember odd bits which are slowly coming back to me but I was running on empty which was when things just changed I visited bath room and it was like a tap had been turned on. The green vile which had been syringed out of tube came out in the litres which was due to my stomach just being lazy and needed kick start- I felt instantly better even though dreaded tube still in- that night I managed to grab couple hours sleep and for first time in 7 days was not sick during night
Next day doctor removed tube and my mood changed.
Your body is extremely strong everyone out there and trust in it even though you may feel at time not really part of it- I can see now this was put down to temperature rise.
Huge part I have not reached yet was during time with tube I knew operation went well and like many of us on this journey we are given the cancer diagnosis and we start putting appointments and procedures into boxes and ticking them which is exactly what I did
Operation done - recovery- next step results of tumour and nodes removed which I was told 9 day post op by surgeon but on that day I was in dark place and I’d envisioned when told no detected cancer in tumour and 40 nodes removed I’d be astatic but I was like empty vessel. Just totally empty. I was told the next step would be oncologist team would be in touch about what next step with any further treatment which was huge box to tick as ended up very unwell after pre op chemo sessions- hour later my surgeon returned to say just had MDT meeting and no further treatment necessary in my case.
Everything for last 5 months was to hopefully reach this point and I was there- 2 days ago I came home to start my next journey of my body recovering- my wonderful strong brilliant body who for few days I left behind as so overwhelmed by what was happening at time. I’m very slowly piecing bits together and I know this will take time to do
Staff at royal United hospital Bath utterly amazing which at times I felt hard to cope with as I work there and experiencing being on other side has been eye opener and I have even more respect for our wonderful nhs in this country.

Josianna

Wow Hev you have certainly been put to the test but well done for coming through it!! I can only imagine how unwell you must have felt and probably very scared too. What a relief it must be to be told that there's no sign of any cancer and you don't need any further treatment. I'm absolutely thrilled for you. Understandably It'll take time for you to process all that has happened to you in the last few months. It's a hell of a lot to take in. One day at a time Hev and lots of self care. I'm taking comfort from what you've said about how strong the human body can be and to trust in it. I'm praying that inner strength will get me through the chemo that's coming my way shortly. Sending you a massive hug and wishing you a well deserved speedy recovery. Jo :x::x::x:

Liz Blakelands

@hev You did have a really tough time of it after the op, must have been very scary. Then the brilliant news that no further treatment required. That is so good. Time to slowly build your strength up and take stock of what has happened to you. All the very best for a continued recovery, one day at a time, big hug, Liz :x::x:

hev

@Josianna
I wish you all the very best for forthcoming chemo- I think we can all read every bit of literature but at end day- we are individuals and no one has the same side affects to same treatments- I didn’t react well to chemo and had many side effects but that has no connection on the next person as spoken to many other people having treatments and many had either no side effects or odd couple so it is a case of whatever happens-i got chatting to lady who told me it Had no affect on her at all-carried on working exercising and going on holiday but it’s scary time as going into the unknown so I really wish you the best :x::x:. @Liz Blakelands i think we all know those scary times and you’re so right need time to process everything at some point as during stay post op many things just don’t seem happened to me

Josianna

Thanks hev. I'm keeping everything crossed but it's reassuring to know that some people are able to get through it without severe side effects. I'm sorry to hear that you had a rough time with it but you're through the worst now and it's onwards and upwards. Jo :x::x::x:

hev

@Josianna
Talking to various people and their individual experiences def helped me
Ok I ended up with some unpleasant side effects but it really is unpredictable
No one will ever be same - never in anything so it’s not that everyone be even similar
When do you know if need chemo

Josianna

Hi @hev Yes I agree, from talking to different people, everyone's experience seems to be different. I suppose I've got a general idea of what it's going to be like. I'll be starting my chemo next Tuesday. I'll be having my bloods done the day before and will be seeing the consultant again. Sending best wishes to you Jo :x::x::x: