Bowel cancer CARERS, FAMILY & FRIENDS chat

Been to hospice this week and then trouble with Paul’s dialysis so had to go to hospital so been back and forwards all week. Never driven so much for years. Had my doctor on the phone e at 7.30 this morning and have handed in blood pressure tests, probably high as nothing is changing in my life with Paul. Also managed to squeeze a trip to the dentist and had a filling. Managed a pretty quiet day today and should have gone to a friends husbands funeral this afternoon but just couldn’t face it. Only good thing is sleeping a bit better. And so it all goes on!

You must look after yourself, easier said than done I know

Helen x

Bless you soo sorry Les is suffering his poor body my goodness If you are worried give hospital a ring see how he is during the night like Helen said cup of tea and a good cry helps me xx We had a call from the team today we are still getting our head around it the scan didn't show anything but because he has a lump and his markers are high plus his bowel habits have changed they said a tumour could be hiding or small so will first do a colonoscopy to look then re do the bloods to see if it has risen they said I know this sound unusual but we need it to grow to see could be hiding Simon has not taken it well very quiet was hoping better news here we go again.Helen well done how do you stay so strong hugs to you all xx

Helen you are so strong I just don’t know how you do it. You try and look after yourself as well. It is so worrying for you.

jkee I am so sad that they could not find anything.  I do feel for you and Simon having to wait. 

this is mot even a rollercoaster but would not know what to call it. I think we are all exhausted and lonely, frightened and everything else that entails this horrible disease. 

text tomorrow as I need the loo xx

Suggest ask the oncologist or doctor or specialist nurse for anti-nausea tablets which can be effective against being sick caused by chemotherapy. I believe this is the norm when on chemo. I had some prescribed when I started Capox chemotherapy and I only needed to tale twice over the entire chemo period. Luckily I was never sick and only occasionally felt some nausea. 

Extreme waves of tiredness during chemo treatment can lead to getting into bed for comfort without the will to get undressed first. I found resting and keeping warm in bed for an hour or two a couple of times a day did help overall to relax and feel better, but with loose warm socks and definitely not shoes! Important to drink a lot of water at room temperature through the day and night (typically at least a litre  (I found during chemo that bottled water from a large bottle from the supermarket was nicer and easier to drink, rather than tap water).

I hope some of my experience comments might help a little. 

Thank you anbou. He is asleep so won’t wake him. He has some anti sickness tablets but I am keaving him rest tonight. I will see how he is in the morning. Just so worried about him xx

Hi Maggie. I’m so sorry to hear how Les was yesterday. How is he today? How are you holding up? You asked about my Dad’s chemo. He first had chemo early last year. He was supposed to have 8 sessions. That was intravenous on day 1, then 2 weeks of tablets, 1 week off and repeat. He got Covid after 6 sessions so they paused for a bit. Then when they resumed, he only did 1 and a half sessions before taking him off to regain strength ahead of liver op. He also had chemo during the radiotherapy that he had after the liver op. That was just the tablets, every weekday for 5 weeks. The latest chemo is back to intravenous and tablets, and same cycle, but different drugs to last time. We’re told he’ll likely lose his hair with this stuff, most probably from the second cycle onwards. No indication yet when they’ll review.

Jkee - I’m sorry about Simon’s results being so inconclusive. Has he been okay with having colonoscopies before? Hope they get him in for it soon and you get some clarity on what’s there.

Helen - it’s inspirational how well you’re coping with everything.

Anbou - nice to meet you and hope you are doing okay.

Love to all x x

Afternoon MGSH nice to hear from you it sounds like your dad's team is throwing everything at it which is good news unfortunately Simon  was suppose to have 6months of chemo  to mop up and cells but after 1 session effected his heart had a enlarged aorta couldn't offer anymore was told very high risk returning his still says they damaged him at his colonoscopy as well but it is the only way we can see what the lump is and pain quickly as you know everything s a waiting came just wished he could had gone through the chemo would have had a better chance of it not coming back. It's a very long journey but we will keep fighting as we all are. Sending hugs x

How is Les today ?

Hi Matt. That is Les routine and it is his 15 th session. We will find out on the 29 of this month but not doing both ops together.  Dreading it actually. Thank you for the information. 

Jkee he woke up not too bad but his hands are worse with the cold. Thank goodness he felt better and took his chemo tablets this morning. He is doing 5 mins on exercise bike but can’t manage any more than that to try and get his strength up. The bowel tumour is growing as the chemo is not working on that one. I got through yesterday but could not eat as everything was all over the place with anxiety and worry.  Here we all go again. I must admit I am envious of couples going out as this was supposed to be our time as we put all our efforts on the girls ie. Putting deposits down on a car, weddings and other things so we never treat ourselves but now we can we can’t.  Big girl pants on which keep falling down. 

I hope everyone else is coping. Lots of love maggie xx

Hi how is Les today and how are you doing?

Helen x