Dread eating, as acid reflux and IBS pain starts immediately.

Thankyou Court getting out in the garden helped lots yesterday. I am going to make most of next few days before in again and then just go with it, take the meds and hope that this may be the last one for a bit and that it has worked. Scans all booked, hoping so much that it will be good news but the uncertainty that a lot of us all have to contend with making me wobble a bit. Trying not to think that far ahead, small steps. 

Best wishes

Hi Landgirl88. Just wondering what treatment you are on. I have had 2 rounds of Folfox but 3rd round delayed due to low white blood cells. I am supposed to be having 12 rounds altogether and I don't know how I will make it. Side effects are so all consuming.  I can control the nausea with the tablets enough to eat something but it's the fatigue,  heavy legs that don't want to hold me, sore mouth and even mouth thrush on 2nd round.

Sorry if I sound negative, I just need to let off steam with others that understand. 

Nicola.

Morning Bluebell 51. You are right the impact on digestive system can be quite a jolt. I also found hunger or not eating made nausea worse and so even if I have no appetite I try and eat a small something such as a ginger biscuit. After last few treatments and trying to just get on with it I did speak to team and they changed anti sickness meds which has helped. Constipation...I know how you feel! and still working on that. 

Hope things improve

I am pleased to hear that the anti sickness meds has helped.  I hate constipation because i used to have it so bad in the past.  I am having 40g of all bran each morning with a handful of dried apricots and this seems to be helping.  I think All Bran is gentle on the stomach.  Something else I haver been told to try is prune juice or prunes!!  I don't fancy that though. Nicola.

Hi, I had Folfox 5 years ago and sounds like same plan. I had 12 rounds but it was very start stop due to various reasons. Its a bit of a blur but i know I had to stop oxaliplatin later on due to effects. I continued with 5fu i think. The fatigue is sometimes the worst. I too find it all consuming and get bit fed up that I cant manage simplest of everyday activities and range from being semi unconscious and sleeping a lot to just  having to do everything a lot slower and with lots of rests in between.

I do find I improve after first 7 to 10 days but I am having treatments 2 weekly so there is not much of a window of opportuniy. It is tough having chemo and youre not being negative you are being real. I have only just come back online after an email from macmillin about talking gave me a nudge and I am so glad I have. I had become withdrawn and bit overwhelmed with the seemingly constant side effects of chemo and cancer. I too felt wary of sounding negative but you are right we do need to let off steam with others that understand.

The most important thing I have learnt from my experience so far is to be kind to yourself and to go with it. When you feel rough and exhausted rest up. I have found it helpful to eat small ammount of good quality foods often to try and nourish myself and try and maintain some energy even when no appetite. Its all been bit eratic and remains so. One day I might fancy something the next it totally does not appeal to me. 

How often are you having your treatments and do you notice any improvement in between?

I am on 5fu and Irinocetin which I have via a picc line. 

I do remember tingling and my legs not working properly with my original chemo. Make sure your team are aware as they will be able to advise.

Im just off out but will check back in later.

Hang in there x

Thank you Landgirl88. My treatment is every 2 weeks. I find that I am improving from around day 7. But only to around 60% of my normal self, and that is being generous. 

We're you having Folfox for liver mets? I have a tumour in my rectum which has spread extensively on my liver. I am 51 and have a 9 year old son at home. I am married as well. 

Nicola 

Hi Nicola, first chemo 5 years ago was follow up after surgery for hemicolectomy for bowel and lymph nodes. This time it is for liver and lung spread. The hope is to shrink it and manage it, possibly also surgery but dependant on success of treatment. I try not to think about it all and focus day to day, enjoying the days when I feel better. like you I dont get anywhere near back to normal in between. I had a 2 week extra delay because of covid and after that I picked up. Thats worth hanging onto, I do find you can bounce back and having spoken to a few others they have said the same after finishing courses of treatment. I just hunker down and binge netflix, Miss Marple and Miranda! I have had 5 now and 6th and last of course for moment, but who knows? I am really hoping its worked but until get scan results all bit unknown. My children are both in 20s and living at home with me, no husband or partner. Do you have people to help with your son? What with all the disruption to schooling due to covid I can imagine it has been stressful with everything you are going through.

Youre not alone though. I have always found Macmillin amazing. There is a lot of support out there. 

I have found it hard to ask for help in the past but most people want to and are only to glad to be put to some use. 

Louise

Hi Louise,  Thank you for sharing your experiences. 

I was diagnosed in May 2021 with a 3cm tumour in my rectum,  it is colon cancer apparently.  MRI and CT Scans 2 weeks later showed extensive liver spread. My liver is considered unoperable at the moment but oncologist said, "we keep an open mind". The Folfox chemotherapy is to shrink the cancer, like yours is. 

I truly hope and I will pray that you get good scan results. 

I am trying to live one day at a time. When chemotherapy makes me feel ill, I get anxious and it can make me very restless indeed. 

I've also gone from being a sociable person to someone who dreads visitors.  Not all the time but most of the time, because I don't want to talk about me and cancer.

It's good to share with someone who understands due to experience. 

From

Nicola.  

We are blessed with friends who are taking our son under their wings. He has just gone camping for 2 days with some friends.

Yes keep an open mind. The uncertainty I find is hard but I manage much better when I go one day at a time. I too have avoided people, good people and friends.Partly because of covid and already had treatment delayed once when my son got ill despite being jabbed. So the self isolation on top of having previously been too rough to go out meant that i think I just slipped into becoming a hermit. Also lost most of my hair and now wearing chemo headwear so my first trip out the house was a bit of a work up. Not because i mind what I look like but because the cat was very much out of the bag as regards what was going on with me. Ive still not told a lot of people, its still raw and I dont want to be talking or reminded of it/defined by it so I try and ignore it, pretend its not happening but of course chemo puts paid to that.

I think its all about timing. Maybe it is our own personal way of protecting ourselves until we are ready to talk about it. Its a lot to process and everyone is different. We are so much more than this disease that has come into our lives and its only natural to want to remain the person we are and not be defined by it. 

Going back to the anxiety and restlessness...have you mentioned to your GP or team about it? Just wondering if there are any meds that might be of any help?

I am off to netflixland to see if I can find anything to send me to sleep. Take care and thankyou for chatting its really helped me.

Louise