Capox recovery

Hi Ossie100 Capox is tough isn’t it and 8 is a lot. I think the mental side of it is tough as well as the physical because you’ve just recovered from a major op and then you’re hit with something that’s supposed to help but makes you feel rubbish again?

I was quite lucky with it and managed to carry on working at my part-time office job throughout - I was a good distraction and made life feel a bit more normal. I also managed a short walk some days but never too far from home so I can’t honestly put a timeline on when I felt fully recovered?

I think the best thing is baby steps and do a little more each week? Short walks getting a little longer each time and then maybe run the first few minutes and just build back up? 

What I found a bit strange was that I missed my fortnightly hospital visits!!! I thought I’d been cartwheeling out of the doors - well not literally as I had a stoma - but I felt weirdly deflated. I think it’s a bit like having your comfort blanket taken away from you - no-one to just run something past, no fortnightly bloods being checked - just sent on my way and told by the oncologist that she never wanted to see me again! 

Hope you’re able to get back to living life to the full before too long

Take care

Karen x

Hi Ossie, I can't answer your question about feeling more normal but I wanted to share that I am on a similar path to you. I had a tumour removed from my small bowel and was found to have stage 4. 

I started capox in January and I have 8 cycles in total. I am about to start cycle 6 week and the tiredness really kicked in on the last cycle. Like you I was really active and now I don't even have the motivation to do anything most days let alone try! 

It makes me feel better to know I'm on the home stretch and I've passed the half way mark.

Wow, yes very similar story and timings. I just had my no 6 infusion last Wednesday. 

We are nearly at the finishing line, role on June!

I hope all goes well for your next 2 cycles and that we both bounce back this summer

Yes, it is quite a journey. I have been walking quite a bit and have been working from home too. 

I can't imagine missing the infusion suite, but I have been lucky in that my oncologist says she wants to keep our monthly video check ins after my chemo finishes. I think it is because I had quite a high number of lymph nodes that were  removed/affected.

Thanks for the reply, I hope you continue to feel better

You too & here is hoping! 

sending you the warmest wishes. My dad has just been diagnosed with colon cancer stage 4 so this is all to come for us. Can I ask whether you went private or nhs with treatment? My head is just in a fuzz and I don’t know what to do.

Hi Sam, 

I actually had my scans done privately initially, as I was having a hard time just seeing my Dr, never mind getting a referral. 

I had them done while I was working abroad (at a French internationally accredited hospital) - and was given the diagnosis there. I decided to come home for treatment with the NHS, but the surgeons wanted the scans all redone at their hospital, which was another 2 week wait. I ended up taking a turn for the worse and was admitted to hospital during those 2 weeks. I was in hospital then for more than 3 weeks until I was discharged from surgery (5 days post op).

I was quite ill in hospital before surgery and I was on a lot of morphine, so I was grateful for my Mum, who advocated for me and kept pushing to try get me into surgery ASAP. They did redo all of the scans and then spent some time giving me the diagnosis all over again! My mum in the meantime was consistently saying that we already knew all of this and they really just needed to get me in for surgery. I was eventually put in for emergency surgery but when I was prepped and about to be wheeled in for anaesthetic another emergency came in and I was cancelled and wheeled back up to my ward. I was then rescheduled for surgery with a colorectal specialist surgeon. I would say that this was the best option, although I had to then wait a bit longer. The emergency surgeon is not necessarily a colorectal specialist and if someone is dying faster than you, you can have your surgery cancelled literally as you are being wheeled into theatre. To be honest I was so ill and on a lot of morphine that it did not affect me as badly as it could, but my family found that day and those that followed until I went into surgery very difficult. 

While the colorectal surgeon I eventually had was amazing and some of the nurses were so kind, I would say that those who do not ask or push, do not necessarily get with the NHS - my experience only. If your Dad goes for NHS, I would say make sure you and your family are there for him, to advocate and to speak up to get him the surgery/treatment he needs.

Once my surgery was done and I was discharged, it seemed like everything kicked into place and the after care and following chemotherapy were all well managed and excellent, especially when I had some not very nice side effects at the beginning of chemo. I have a lovely Macmillan nurse who checks in with me a week after infusion and the nurses at the chemo suite are also lovely. I would say that the Macmillan nurses and advisers are a wonderful resource for the person who has cancer and also their family. I have had to call the chemo helpline a few times due to side effects and they were also great. I also have a check in with my oncologist each cycle and she has said she would like to carry on with the check ins after my chemo finishes (I think this usually stops after chemo) to keep an eye on things.  I will also get scans every 3 months for my 1st year and then probably every 6 months after that. So, I feel well supported after my treatment ends. 

This is just my experience and I am sure others have had quite different ones. I hope it helps though. Good luck to your Dad, stay positive and take each day as it comes. 

Hey Sam. Sorry to hear about your dads diagnosis. My dad has the same diagnosis and just started Capox. My dad has liver mets. Its a rollercoaster isnt it 

I had four sessions of Capox. One of the intravenous treatments had to be postponed and tablets reduced by 25% as my liver was under too much strain. It's one of those drugs where the treatment is worse than the disease (but with a much better prognosis). I was generally bedridden for much of the later stages of treatment, weak for a couple of weeks after and it took me about 6 weeks for my brain fog to clear. Sadly, nearly three months after the end of treatment my toes and finger tips are numb but hopefully over time they will be OK. Be kind to yourself and accept that you need to rest and recover, and this takes time. It will be worth it in the end