Bowel cancer treatment and side effects

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bartoni79

Chemo round number 8 and struggling

Hi All,
I’m looking for some advice/ fortitude! I’m 8 /12 cycles into my chemo. I initially had 2 :x: CAPOX, then got moved to FOLFOX (so far completed 6) due to an allergic reaction and being hospitalised with CAPOX. FOLFOX side effects are definitely more manageable but I’m feeling like I’m walking around in some kind of drug- chemo brain haze fug - with rapidly decreasing patience and still with 4 cycles left. I feel like my mental strength is quickly depleting; my physical strength is going as I get really bad stomach cramps and I’m struggling to get through / out the house fir 4 days post chemo. Of course I’ll get through the chemo but what do others do when they reach this stage - has anyone taken up any (non mentally taxing) hobbies? Any advice will be digested thoroughly! Thanks

Baxter2

Hi @bartoni79,

I'm sorry you're struggling a bit with your chemo. We're all so different and so are the various chemo regimens. I found Capox pretty challenging too. I guess in the grand scheme of things, your side effects are all quite normal so that's reassuring at least (unpleasant though, I know!)

Regarding your question about some non mentally taxing activities/hobbies..........some of the things I really found helpful were the various supports available from Penny Brohn and also Maggies. Have a wee google and take a look for yourself. I also completed four adult paint by numbers (masterpiece by numbers was the company I used) and had them all framed. I did photographs of my dog and 3 other family portraits. They turned out so well and I loved doing them as I could do half an hour or all day if I felt like it! All you need is patience, time and a steady hand. Honestly, no talent is needed! 😂. I know you have a little one so finding time may be a little challenging but it's something to consider. You could even upload a photo of them and do that? You will be amazed at the quality!!

Another activity I love is 'wild swimming' and I've been doing that for about 3 years now I think. I do it all year round in the sea and a local loch in either a shortie or full wetsuit. It is such a sociable activity and again, a quick google will tell you of all the benefits both physically and mentally as well as local informal groups near you! Everyone is just so friendly and welcoming! I guess you have to like swimming though!

Anyway, these are a few things that have helped me during chemo (I'm on it continuously) I also find that even on the days just after chemo when I don't feel too great, a walk in nature and fresh air always does me good and I never regret making the extra effort to get outside...........as long as it's not windy and rainy as I hate that combo!! I go into the woods a few metres away, to the large town park or to the beach.

Sending you lots of love and my warmest wishes,

Karen 💐🌻🌺🌸🌼

Lirio345

Good morning @bartoni79, I am really sorry to hear about your struggles and can totally empathise - from experience. Karen has come up with some great suggestions and I did want to particularly highlight those four days following treatment.

I would say I have 2-3 days like that and my way of coping is a mixture of acceptance and pushing through. I make myself do things for an hour or two in the morning (then I can say I have achieved something) and then crash and watch day time tv! Somehow accepting that these days are challenging means I feel that I am in control and am allowing chemo into my life - ie it is my decision!

This is what helps me and I am also on permanent chemo every two weeks. It might not be right for you, but you could give it a go? BTW I have seen the finished paintings that Karen mentions above - they are amazing - and a really good example of mindfulness. Genealogy and gardening are my mindfulness activities!

I really hope things improve for you - let us know if you can? Take care, Kim :x::x::x:

Jane39

@bartoni79
I am sorry that you are struggling and I think we can all resonate with what you are feeling.
Some great tips form Karen and Kim.
A drive out in some nice countryside or seaside always made me feel better when I had no energy on those post chemo days.
There are some great podcasts and audio books that are a change from the normal TV.
Maybe have a look at the online sessions with Penny Brohn - they are excellent and you can book onto as many as you like. They are not all exercise related.

Take care, Jane :x:

Wegwe

@bartoni79 sorry to hear you’re struggling. For me, going on lots of short walks helped clear my head a little. Longer walks increased my nausea, and I didn’t always manage to strike the right balance. If I remember correctly you have a very young child; perhaps going on short walks is something you could do with your baby.
I also did an exercise programme with an oncological physiotherapist, aimed at reducing the loss of muscle mass. I felt those sessions helped clear my head, too, even on the weeks I had chemo. For those first four days when you’re struggling that may not be an option at all, but it could be worth looking into for the other days. There is some evidence that limiting the loss of muscle mass during chemo has a positive effect on side effects, but it isn’t conclusive.

Bobs74

I've found (pre cancer) enjoyment in jigsaw puzzles and knitting and both are non taxing/non energetic so feel I'll be doing lots as the effects build up. Wishing you well on it! :x::x::x:

bartoni79

@Bobs74, @Wegwe, @Jane39, @Lirio345, @Baxter2
Thanks so much for your advice. I took some time away from social media devices hence my delay in responding. I got through Cycle 8 and feel mentally better so Ill put your advice to practise! I hope you are all well. Thanks again!!!

baker s

My husband is very low mood. He should have had cycle 5 today but could not go ahead as his platelet count was low. Chemo has been put back a week. Have you experienced this :x:

Lirio345

Good morning @baker s, a very warm welcome to the forum. Unfortunately is a quite common for people’s chemo to be delayed because of platelets and/or white blood cells being low.

You will probably attract more responses if you start a new thread about this, (top right hand corner). You could also search for former posts about this using the search facility above.

Take very good care, Kim :x::x: