Bowel cancer CARERS, FAMILY & FRIENDS chat

Vicky you can try as I have requested you as a friend xx

Found you

Hi Maggie and jkee I have followed your story here on the forum for the past 2 21/2  years , I don’t comment much because as I said when I first joined I am not very good at this , but my husbands story has followed a very similar route to you both and Helen and vickys , I am sorry I haven’t contributed much .

my husband had the all clear October 23 after a massive operation and a permanent stoma , then by April 24 it had spread to the peritoneal and is stage 4 palliative chemo which his had for almost a year now and getting very tough .

i am sorry you have moved of to private messages as I will not be able to follow your progress .

perhaps from time to time you could update the group .

again sorry I haven’t contributed much but still getting used to sharing I have been keeping everything to myself mostly through out this rollercoaster.

wishing you Maggie and jkee all the best on this horrible journey we are on 

lol I think have written it all twice told you I wasn’t very good at this 

Hi Angie8

First of all we are still here for you and everyone going through this nightmare Cancer journey. We also are not very good with technology bless you. Sorry to read your husband is going through the palliative Chemo but It sounds like you are getting good results and yes it is tough. Simon did 6 months but latest scan showed it had spread to more lymph nodes and progression in lungs and around the heart so stopped the palliative chemo. We have been offered a new drug lonsurf and targeted therapy 20% chance of keep it at bay but was told to get palliative team at home for his now pain. We are here we all need as much support as possible and I for one am pleased you reach out is the the side effects that are taking it's toll Simon has rash sickness finger nails and skin cracking . We are under hospice care now which I am finding it hard to get my head round think I have been in denial up until now my heart goes out to you please keep in touch if I can help xxxxx

Hi Angie. You don’t have to contribute just let us know how you are coping. So sorry you are having the same experience as us. It can be a lonely place for us all and I am pleased we have this site. Please share the f you feel comfortable with doing that or just come on and comment. We are all still here for each other. My thoughts are with you but please if you want support just write hello and we will be there. Sending you a big hug xxx

Thank you , we have been lucky with the chemotherapy Bill has coped well with the side affects no sickness just nausea, the cracking skin on hands and his eyes get sore and blood shot for a couple of days the fatigue is the worst for him .

we also was referred to the hospice not because of pain but a 3 week course to manage fatigue it wasn’t really a lot of help , but it was good to make a connection with the hospice, they do carers walks I may go on one but at the moment they have all been on his treatment days .

We had pet scan results yesterday and no spread so that’s great news , but they have reminded us it will not be cured and the constant chemo is what’s keeping it at bay while it’s working and his coping then she mentioned when that changes there are other treatments, chemo they can offer , they are giving him a little break almost 3 weeks his so excited ( it’s the little things now lol ) , then back on chemo the week after his birthday 12 th may .

thank you for sharing your journey and I am going to try and do so to as I do think it helps x

Hi Angie. I am pleased for you that chemo is keeping it at bay. Hubby’s has grown so new chemo starting on 6 May. My hubby does not know I joined this site still but have made good friends in sharing my journey and the comfort you get is overwhelming. Having no one here to share it with at home is awful as people or acquaintances don’t understand what we go through. My hubby has peripheral neuropathy in hands and feet and have been told this different chemo will be worse. He has been in hospital for an infected Hickman line but antibiotics sorted that out. He is getting it taken out but there is only one person at James cook that can do it so just waiting for the call which could be another 3 weeks. It does help to share but also makes it more real. I am thinking of you and yours. Sending a huge hug to you. Make sure you look after yourself as well as I haven’t and have ended up with very low B12. Platelets up. Infection etc. lots of love and strength. Xxxx

Hi Maggie in the first few rounds bill had the numb hands and feet but as time went on it seems to have got better , his biggest thing like I say is the fatigue he also gets problems with his stoma and has to be careful of blockages because it get constipated then gets very loose and becomes sore I do feel sorry for him , but like your husbands he doesn’t complain just gets on with it .

I haven’t told him I have joined the forum although I don’t think he would have a problem with it , like you say I think I have avoided talking about it all this time because it makes it real , being referred to the hospice brought it all home to me .

i tend to cope with keeping very busy and my mind occupied, but it is taking its toll xx 

Hi angie. Les has been on chemo for over two years and his feet and hands are no better. I am dreading this next round of different chemo as I will have to keep an eye on his vital signs. I personally don’t like talking about it either as it makes it so real. All we can do is be there and make sure we look after ourselves.  I hate going to chemo with him as that makes it more real. It is just a rollercoaster constantly.  I live in the north east where do you live. I just wish there was a group near here where we could go for coffee and just have a normal chat which woukd be nice. Do you have any support near you.  Love and hugs to you and well done for letting most of it out.  Maggie xxxx