Bowel cancer carers, family and friends chat

I buy ready made meals from marks and Spencer’s, aunt Bessie’s Yorkshire pudd and then add veg for 2 sends in microwave. I just hate cooking so that suits me. 

I agree there are no words for Patty and the same for torry who has sadly gone through it. Sometimes I think this unbelievable but I see him with braces on as he has lost weight and no way would he let me do what I have been doing in the garden. Never in a million years did we expect this. Not sure if you read all the posts but we bought a motorhome and it has been used once. He won’t sell it as his goal is to get away.  I don’t say anything as I think the goals help him.  

Hope everyone is sort of coping huge hugs  love Maggie xx

Agree, no words for PattyK and Torry. It's tough. 

Distraught, take it easy with the garden, especially during the hot weather, you're doing the best that you can. I saw your old posts about the motor home, sigh life is unpredictable and doesn't go according to plan. It's good he has a goal. My dad keeps on talking about going on holiday to Europe, I also don't say anything, it gives him hope.

Misprint, I saw your introduction post on here. Sorry you find yourself on this website, it must be difficult to see your husband looking frail and not willing to go outside for walks. Take care of yourself and make sure you eat enough so that you have the energy to deal with things.

My dad isn't eating enough and he doesn't like the Fortisip juice cos it's too sweet. Our GP is really good, she made a referral to the dietitian. They're going to come round and weigh my dad next week and do an assessment, the dietitian also prescribed Aymes actasolve savoury soup and there's a Fortisip milkshake that's a neutral flavour that can be mixed into food. I haven't tried it yet, still waiting for the pharmacy to order it. But maybe it's something you can speak to the GP about to help with your husband's diet and nutrition?

Hope everyone else is coping ok. Big hugs x

Evening Everyone!

Thank you for the kind words and sentiments. Was at the hospital today. Jay has decided that he wants to stay there don't know if I have said already incase I am repeating myself. Saw the palliative nurse she was actually quite considerate today. She said it is best what he wants as he said to them that he feels too weak not to even move from the bed and she feared that any sudden exertion in trying to get him into the ambulance would maybe cause him to pass away in the ambulance home and that is something we don't need and wouldn't be very diginified. They have all the equipment they need there for him if its a case they need top ups of medications etc and if a nurse was needed we would need to wait for one to come to the house where they are on hand there so things like that make sense. I have just realised though that he will now never come back to this house again and where he is, he will die. He seems settled though. One of his friends from years ago was up seeing him today he stayed from 10a.m. until 3 he is William's godfather and we haven't seen him in years you just lose touch with people and so sad it came to this to meet up again. I went in a little later because the palliative nurse wanted to speak to me this afternoon. I left just after 5 and William went up tonight with Nicole and Myla. He was talking to me today about what he wants at his funeral which I didn't want to talk about but he said it needed saying and he also said that I need to promise him that I will look after William for him and Nicole and the wee one but that goes without saying. Very hard for me to hold back the tears but I think I just about managed it. His mind is still as sharp as a tack and he is still very aware of what is going on around him. One of the nurses looking after him came in and he said she looked as though she had been on holiday and she said no just `Sunny Govan` (an area in Glasgow) and this prompted him to tell her stories that he was born and lived there for 2 years. He had been going through lots of stories with his friend Alan too and when I showed Alan said it was stories `I wasn't supposed to know about`. So it was good for him to have us all there today and lift his spirits a bit. He was continually being sick today though he asked me to bring juice for him but everytime he took some he vomited. The nurse came in though and upped his anti-sickness in the driver. He phoned me this morning and said he wanted me there because he kept saying `I've not got long` so I phoned the ward desk and they said he was fine. His blood pressure was slightly low but his obs oxygen temperature etc were all stable. I think now it will be just when he decides he wants to go and it'll be just how long he wants to hang on for. I am hoping he will be here for next week to at least see our anniversary which will sadly be our last. He is just eating sweet things now like ice cream and yogurts. The dinner lady that was in today asked him if he would like some soup and he said no just ice cream. 

I am just wondering now if I should start to clear out some of his stuff. Not clothes or that but pads and medicines and just get them to come and take back the walking aids the frame and rolator etc because he's not going to have a use for them anymore. And then I think no that would be being disrespectful as he is not gone yet and in a way having them here still gives the sense he is in the house. Got a delivery of urine bags for him today they will be going back eventually too along with all the other stuff the stoma bags etc. It is so hard. Helen how do you get through this?? I have started my Diazepam so hope they will work. The poor dog he senses something is up too he is looking just so lost and forlorn. I don't usually allow it but in the circumstances I have been allowing him to come up on to the bed to sleep beside me and he sleeps on Jay's side. He's only a little dog a Border Terrier so doesn't take up a lot of room. He is Jay's dog he was William and I's Christmas present to him 10 years ago. Well going to go off to bed soon. Having to do it all again tomorrow. They let you sleep over at the hospital while that is going on they leave a put you up bed in the room for you to sleep beside your relative I may do that this week. Well good night everyone. I am exhausted. Sleep Well if you can. 

xx

Hi Maggie. I think I am going to have to try the ready meal route, today I had cornflakes for my dinner as he didn’t want anything. When I went to the chemist today I asked about the high calorie drinks that you can get and they gave me one for him to try. He had this for his dinner which I know is not enough. He has lost 2 stone but he is still 13 stone so not too bad yet. I hate cooking too lol. 

Barry and I have had caravans and motor homes in the past but don’t have one now, his brother has a motor home and go away for months at a time, I am pleased for them but it does make me sad. 

I know when I look at Patty and Torry’s situations I am lucky but it doesn’t feel like that sometimes. 

take care  Pauline x

Well Pattyk you have had a full on day today. The one comforting thought you have is that he is being well looked after in the hospital and you can be there all the time. You ask how I got through this  - you haven’t got a choice and you will find the strength to deal with this. It is exhausting and emotional but you have to put a brave face on for him although you are dying inside.

I am starting bereavement counselling tomorrow afternoon, haven’t a clue how that’s going to go. I lie in bed every night and cry wishing things were different as everyone else is living their lives and I’m stuck on my own. Never been on my own since I was 17 and finding nighttime’s the worst. Dreading the long winter months and nights.

I didn’t get rid of stuff til afterwards and there was a lot. Haven’t managed to start sorting Kevin’s things out and really there’s no hurry.

Hope you manage to get some sleep tonight and I will be thinking about you. tough times

love Helen x

Hi fallingleaves88. I went to the chemist and they gave me a Fortisip compact for him to try which he did.  He said it was ok so I am going to try to get the gp to prescribe them although the pharmacist did say they may be reluctant. We will see. I had cornflakes for my dinner so I have to get a bit more organised. It looks like your dad has a good team looking after him. Take care. pauline x

Oh Patty this must be so hard for you, there is a lot to do and think about. Don’t worry about it all now though just spend as much time as you can together, that is the most important thing. So pleased the staff are being understanding and you can stay during the nights. Sending hugs. Pauline x

Vicky I am so sorry you must have such a lot going on in your head just spend your time together anything can be done later. PLEASE KNOW YOU ARE ON MY MIND TODAY SEND LOVE XX

Patty my thought are with you while you are going through this. Is he in a room on his own.  Again no words can prepare you for what is happening. As torry said you will find the strength.  I just feel so sad but pleased the nurse is okay and not patronising with you. 

the GP would not prescribe me with those drinks and instead referred me to the dietician who rang me yesterday. She is asking the GP to prescribe me the protein drinks as I am under weight. She was very nice. 

as you can see you need to look after yourselves as well as this is one of the toughest times in our lives.I don’t know where I have the strength to do the jungle but getting there. Garden waste took all of the stuff so gave them chocolate and cold drinks.

will be back on later. Huge hugs to you all and I am thinking of you all. Lots of love Maggie xx

Thank you Helen!

Yes it is tough. Like you, I am now thinking of all the `won't be's` he won't be here for his grandaughter's 3rd birthday and future birthdays he won't be here for my future birthdays and now he won't see his 70th Birthday which would have been February next year and William's wedding in 18 months time. Yes the short winter days will be hard but weirdly enough as I said I like the winter months for some reason always a certain peace about them but then that was with Jay here how I go this time I don't know with being on my own there will be a certain vulnerability about it now I think. Many of my neighbours round about here are women who have lost their partners so I guess I will be joining that wee club shortly too. It's just all the `if only's` and `should have dones` that are now going through my head and now it's odd that any decisions made now in the future will be mine alone whereas it was always a joint decision but in the end Jay usually left everything up to me. The ironic thing is too I changed our Sky TV package last week. The boxes we had kept breaking down and the picture kept breaking up so seemingly they are not replacing these boxes and just putting you right on to SKY Q. They were doing a deal that you keep your original subscription and get free installation which is usually £99 so I took it and got multi-room meaning that it would be set up in the bedroom for Jay to watch when he came home but that has backfired and he's not now. Things are worrying me about the running of things I know I'm jumping ahead just now- lord he's not even away yet how I go about getting an MOT for the car stuff like that and you hear people getting ripped off with things like that especially if your a woman. Jay has always used a reliable garage though the same one every year so I hope to continue with that and I hope William will help me there too in what to do as I would like to keep the car for myself as it is ours bought and paid for if I think its too much for me to run I could just always sell it. We have put plans in action to sell our caravan I asked William if he and Nicole would like to take it on and I could just go over with them from time to time but he said no the expense would be too much for them so at least he's honest so just going to cut my loses there and let it go. I have contacted the park and the management there have been very understanding as to what is going on and said there is no rush for me to do it as I will have other things to do just now and that they will negotiate a price for me and when I am ready just go over and sign the paperwork. Again, William and Nicole want to come with me because he doesn't want to see me getting ripped off if they try to buy it off me for a lot less than what they think it is worth you know how these people work and with me maybe not being in a sharp state of mind, I would maybe just take the first offer so good they want to be there as backup for me. Just all those things I'm fretting about though. My dad was a one that was always telling me to slow down and take my time and I would meet myself coming back and these things will get done, when they get done. He was a very wise man my dad. So, today I will be going back to the hospital to see what today brings. His friend Alan is going back today for a couple of hours and I'll be there and William said he will go after work. Take Care All.

Vicky x