Bowel cancer CARERS, FAMILY & FRIENDS chat

Hi Maggie. How is Les today? The travelling does get a bit tiring but I’ve started getting the train now instead otherwise it’s a really long drive. I think it’s harder for the partners than for me. I get away from it from time to time and have the distraction of my wife and daughter which can take my mind off it for a little while. It’s constant for my Mum and she never gets a break from it (not that she never has the opportunity but I know she wouldn’t want to; she’s totally devoted to my Dad). That said, I am finding it tough. I like to run as it normally clears my head a bit. I went for a run today and had to stop a couple of times as I felt like I was hyperventilating. I also ran past the church that my parents attend and stopped by a bench outside and had a good cry x x

Helen and Vicky. Please may I pick your brains on something? My Mum and I will often sit next to my Dad’s bed and hold his hand or rub his arm. He’s asked us to stop rubbing his arm as he says that it hurts. That’s fine as obviously we don’t want to hurt him, but it seemed a bit strange to me. Did Kevin or Jay ever mention anything like this?  Thank you in advance.

Hi there I started to massage Kevin’s legs trying to help for walking but he said to stop as it hurt so maybe their skin becomes very sensitive.

Helen x

Hi Matt. He is in a lot of pain and the feeling he needs the loo so spent visiting times in the loo .. he won’t take anything but the laxatives they are giving him on a night at 6. It is really hard to watch. I am glad you run to calm down but today was too warm for that.  I am also pleased you get the train as then you are safe and your mum won’t worry about you driving.  This is really hard for your mum and I am with her about not leaving your dad. I never leave Les may be only for an hour to go shopping but then I make sure he was okay and he had his phone.  The shop is only 10 mins away so that is good. My heart goes out to you and your family xx

Thank you, Helen x x

I’m really sorry to hear that, Maggie. Has he said why he won’t take pain meds? It is so hard to watch when they’re in physical or emotional pain.

Yes, it was a bit too hot today but I wanted to do something to try to tire myself out as I haven’t been sleeping too well. I still feel completely wide awake though!

I think one of my mum’s worries is that if he drops his phone, he won’t be able to pick it up and so will have no way of getting in touch with her or anyone else if he needs something. I suggested getting an indoor Ring camera, as she would then be able to check on him while she’s out and I think you can also talk to each other through it. I don’t think I’m going to persuade her, but she did go out for a little walk yesterday with my sister while I stayed with Dad.

Hope tomorrow is a better day for you and Les x x

Hi Matt!

When Jay was in his final hours his speech was really bad and he could hardly speak his swallow reflexes and everything had gone too so just had to moisten his lips as any fluid or anything he couldn't swallow it.  I remember sitting next to him at his bedside and was rubbing his arm and shoulder and he kept batting my hand away as if he didn't want me to do it. He had that horrible gravelly breathing going on as well then he just went quiet but I thought he had just fallen asleep because he was kind of lapsing in and out consciousness but he had actually gone and I didnt even realise it. Think what Helen says is right and maybe the skin starts to become sensitive. Is your dad quite fidgety? Jay would pull at his bed covers a lot and move his legs around a lot of the time too I noticed as well. Sending you best wishes. 

Vicky x

Hi Matt. Hope you don’t mind me popping in with a couple of thoughts? My husband had his arm round me the other day and was absentmindedly stroking the top of my arm with his thumb and after a minute I had to ask him to stop as it was a weird sensation and a bit irritating ? Maybe your dad just didn’t really appreciate the gesture but didn’t want to upset your mum so said it was painful? 

Do they have an Alexa? My step daughter has shown her 6 year old how to say ‘Alexa call xxxx’ if anything was to happen to her? 

Take care and keep looking after yourself 

Karen x

He won’t take the painkillers as he does not want to be constipated and as you know he can’t push due to the bowel being stitched up as if it leaks then he is in trouble.  It will be a worry for your mum but she needs a little walk just to get some fresh air. I am pleased she went for a walk as mentally it will do her good. She does not need to go far either. Matt I just don’t know how you are all coping with this with your wife and daughter being so far away as well.  I am thinking of you and your family. 
hugs to everyone this morning xx

Thanks Vicky. He’s not particularly fidgety. He doesn’t have movement in his lower half. He does like to have something to hold, normally the bed remote and kind of strokes it with his thumb. I think that’s a comfort thing though; he finds it reassuring that he can adjust the bed to get comfortable. When he was in hospital with kidney failure he was incredibly fidgety - pulling at his gown and the bed sheets, and constantly rearranging all of the stuff that he had around him.

I came downstairs this morning to find him sat up in bed doing some church accounts on his laptop. Unexpected, but lovely to see him doing ‘normal’ stuff.

Thank you again x x