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Dear Carog,

I do sympathise, it is horrible to be told you need chemo, but best to bang that one pesky lymph node on the head. It will be interesting to see which chemo they give you. Someone said to me that we have to remember that chemo is our friend. It can do wonderful things! It is also good that you don’t have to wait long to see the oncologist, they are looking after you well.

So pleased the bit of biscuit worked
Look after yourself xx

I hadn’t realised I wasn’t logged  in which is why the previous post says anonymous - it was me! And thanks for accepting my friend request - not quite sure what it means as you are my first friend! xx

Dear Carog,

Well done getting through the operation. I’m on a similar journey to you.  I had my op back in January with a temporary ileostomy and my stoma stopped shrinking about 4 weeks afterwards and has remained the same 25mm diameter since.

Regarding food, I had a blockage while in hospital (after eating horrible hospital overcooked tasteless soggy carrots), so I was very careful with foods for a long while and still am.  I was advised not to eat peas, tomatoes, dried fruit or oranges, apples, grapes etc (re skin causing blockage) no sweetcorn or nuts or leafy vegetables.  Like you I miss part cooked vegetables, baked potatoes and bowls of salad.  I think I’m going to try salad soon and see what happens.

I’m also having chemotherapy to mop up (they found 1 involved lymph node out of 12),  I’m having Folfox which consists of (Folinic Acid; Fluorouracil & Oxaliplatin)  6 x 2 week cycles: Day patient on Day 1 for infusions then home with 48 hour pump, Dexamethasone tablets for 2 days & Filgrastim injections for 5 days from Day 4. (however, cycle 2 was delayed 2 weeks due to neutrophil count being too low and is now on hold at moment after 4^th cycle as they think I may have ‘diversion colitis’, so investigations are under way).

I was quite upset when I found out I needed chemotherapy but once I got my head around it I’m actually quite pleased to be offered it, as it will hopefully knock any cancer cells left on the head.

It must be so nice to have so many people at home to support you, quite a houseful.

I’ll be thinking of you on Monday, let us know how consultation goes.

Look after yourself.

Net77

Dear Net77, I was expecting to be told I had to have chemo because my polyp was attached to the rectum wall so had spread at least locally.  But when I went I was hoping they'd say all the lymph nodes were clear.

One very annoying symptom is I feel like I need to open my bowels most of the time but there's nothing to pass. I'm assuming that is because of the surgery and stitches. 

Yes I long for greenery and fresh salad !

Let me know how your chemo goes. My cancer nurse said hair loss is quite rare which is encouraging. My daughter is going to buy me a turban just in case !!

Did you have to wait since Jan for a reason? I assumed I'd be getting chemo in the next few weeks, my op was 28/4.

Best wishes Carog

Dear Carog,

It’s disappointing isn’t it when you hope the nodes are clear but you’re told otherwise, but on a positive note 1 in 24 (1 in 12 in my case) is the next best result.

After surgery I had the feeling of needing to open my bowels all the time, it was all consuming and I found sitting very difficult. Sitting on the loo didn’t really help at all. I found sitting in a warm bath helped a little (I usually don’t’ have baths just showers) and then I started bathing my bottom with warm water while sitting on the loo and this gave some relief. This carried on for a few weeks and I eventually passed some ‘old’ poo and things settled down – such a relief! It was pretty miserable while I had the constant feeling of needing to go to the loo and spent hours sitting there but it resolved in the end.

Yes, I was also told my chemo probably wouldn’t result in total hair loss but there would be some thinning, I have very fine hair anyway and have noticed hair loss at temples and top of head at front although I don’t think it’s noticeable to most people at the moment. Fingers crossed it doesn’t get much worse but if it does at least it should grow back. I’ve noticed the last few days this area of my scalp has become a little more sensitive.

I started my chemotherapy in early March. I believe they like to start it within around 2 months of surgery but need to give your body enough time to recover from the major surgery.

Best Wishes,
Net77

So I saw my Oncologist today. He says I'll start chemo in 3 to 5 weeks after I've had some blood tests. It will be 4 cycles of iv, oral and rest per 3 weeks. 

He was very reassuring and explained all the relevant statistics. They're sending me to the same hospital my mum had her chemo at 20 years ago !

Feeling resigned. Has anyone got any advice about preparing for chemo ,? Best wishes Carog

Hi Carog,

It is good you have an oncologist you like and trust. It sounds like it might be the same chemo I had - Oxaliplatin and Capecitabine, aloo known as Capox or Xelox. If it is, then there is lots on here about possible side effects. They told me they never know who or why everyone has different side effects, but forewarned is forearmed. With luck you might be someone who has mild or no side effects. I would say keep as fit and well as possible, and avoid too much socialising because you don’t want to get a cold or COVID which would delay treatment. And once you start,  make sure you eat enough protein as the chemo attacks the protein in your body. You can do it, and it is definitely worth it xx 

Thanks for the advice. I'll try to eat lots of protein from now on especially as I'm avoiding veg at the moment. As you say I need to see chemo as a friend who is helping me get back to normal. 

So I saw my Oncologist on Monday. He was nice but a bit blunt! Like if there is a 3rd wave of covid , cancer patients won't get ICU beds !

Also gave me lots of stats which weren't as good as I thought .

Anyway I'm going on Capox as soon as the DPD blood test comes back. Meanwhile trying to Protein load and keep healthy. 

Hope you are doing well.

Best wishes Carog

Hi Carog

It is good to have a plan in place and know what is ahead. I admit I found the first few cycles of Capox difficult but they kept adjusting the dose and by the fourth cycle I had very little side effects. And it completely cleared the swollen lymph nodes, so it works! Buy some gloves! Everyone is different - here’s hoping you sail through it all, whatever, you will be fine. 
I saw my oncologist yesterday and have come down with a bump from my high of being told my tumour had disappeared. They cannot tell definitively if there are any cancer cells left other than by cutting my rectum out and biopsing, which they don’t want to do if it has gone. Catch 22! So I have to have another mri, then one week of radiation, then another mri, as there is a fair chance the tumour could come back. If it still looks like it has gone I will be closely monitored for 2 years, and it may turn out I then still need surgery. It’s a long journey! 
Keep fit and healthy!

best wishes xx