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Marmalade

Re: Hello

Postby Marmalade » Tue Feb 21, 2017 10:55 pm

Hello Veebee,

I'm just dropping by to see how you and Allan are, you mustn't feel you have to post if you don't feel like it but it might feel good to know we are hanging around on the sidelines and thinking of you.

I wish you peace and a restful night

Marmalade xx

Veebee
Posts: 93
Joined: Thu Feb 16, 2017 4:31 pm

Re: Hello

Postby Veebee » Wed Feb 22, 2017 11:55 am

Hi Marmalade I wrote out a long post and then realised I wasn't logged in and lost the lot. Have to nip out now...will rewrite it later. xxx

Veebee
Posts: 93
Joined: Thu Feb 16, 2017 4:31 pm

Re: Hello

Postby Veebee » Wed Feb 22, 2017 3:58 pm

I had a problem posting...

Veebee
Posts: 93
Joined: Thu Feb 16, 2017 4:31 pm

Re: Hello

Postby Veebee » Wed Feb 22, 2017 5:01 pm

I get an error message when I submit a post. Will try again on the quick reply but will keep it concise. Allan's mood has lifted, thank goodness. Things are much the same. Why don't I see the deterioration that others see in him? Why do I stockpile food and snacks that he fancies once but not again? Thank you for your concern....xx

Veebee
Posts: 93
Joined: Thu Feb 16, 2017 4:31 pm

Re: Hello

Postby Veebee » Wed Feb 22, 2017 5:03 pm

That post was accepted. I've written 3 long posts but when I tap the submit button I get an error message. How odd.

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Hello

Postby Elaine123 » Wed Feb 22, 2017 5:37 pm

Hi Veebee glad Allen is on the up again it's never just a happy medium eh it's either up there or way down there. I can identify with you as regards other people seeing a change in Pete I suppose it's because we are seeing them all the time and others are comparing them to the way they looked last time they seen them. The same applies to stockpiling the food he takes notions and eats something and enjoys it next day I am off into Tescos for four or five of whatever it is and give him it a couple of days down the line and he is like " oh I can't eat that it tastes awful " Every night he vows to eat his meals and also take a supplement to try and up his weight ....lnext day when I suggest an enshake he says " I couldn't possibly take any more to eat today. We were at the clinic today and again his white blood cells are too low so no chemo tomorrow , but I think he is starting a chest infection so it may be for the best. Did you manage to speak to the Dr on Mon about Allen's low mood.? It's difficult talking to them isn't it as Pete and Allen probably don't see themselves the way we do. Better go and try and tempt Pete with dinner and I will go through everything he can have and he will then ask for something we don't have and it's off to Tesco again tomorrow to buy a few of whatever it is lol. Take care and hope Allen continues to have a good week.
Elaine
X

Marmalade

Re: Hello

Postby Marmalade » Wed Feb 22, 2017 8:02 pm

Hi Veebee,

I used to have trouble with long posts but found that pressing submit again after a minute seemed to work. Alternatively save the post to draft and then submit it. Maybe the site is having an off day!

Glad Allans mood has lifted a bit, I hope that is because someone has prescribed some nice feel good drugs. The stock piling is what we all do, just in case they fancy something. As things progress they seem to be able to face less and less and even swallowing is difficult so don't worry about it, keep trying little bits of things and see what happens. Our hospice suggested tiny squares of things to left on a plate. It's amazing how they do pick at them. Marmite on tiny bits buttered crumpet or toast worked well as did half teaspoonfuls of peanut butter...the oddest things seemed to work best.

I used the think Louis looked really quite well until I look back on pictures of him over the 7 months and I wonder how I could have thought so. It must be as Elaine says that we see them all the time so the changes are not as obvious. I always noticed it when helping Louis to shower. He never wanted to be weighed so we didn't do it and he didn't like to see himself in a mirror so we moved them. You just keep adapting.

Try not to worry about the waste of food or bother too much about time or doing anything that doesn't give one or both of you some pleasure. I got all the distant friends and extended family to come before he got too ill, he hated the idea of people seeing him as an invalid. Our daughter encouraged me to get all the visits out of the way and it was good advice.
Louis got very tired towards the end and so did I.

I hope you are managing to get some rest and are looking after yourself and I wish you a peaceful night.

M xxx

Veebee
Posts: 93
Joined: Thu Feb 16, 2017 4:31 pm

Re: Hello

Postby Veebee » Thu Feb 23, 2017 2:34 pm

Well, looks like I'm back in the fold, so to speak. The DN came yesterday on a regular visit. Allan has 2 tiny skin breaks at the base of his spine and she's put a dressing on. I've been regularly applying the medijel to the area but he's lost so much weight that he has no cushioning on his backside. He has a blow up cushion already and she's ordered a mattress to come on Monday. Otherwise, things are just ongoing. I feel as if we've reached a plateau where things are stabilised. We have our routine, Allan eats small amounts but eats something every few hours even if it's just a yogurt or some soup (from the cupboardful of soup that we have).
My sister has been away for 8 weeks and she noticed a big difference in him....His brother came and as I was seeing him and his wife to the door, he burst into tears. It took me aback and I stupidly asked him what was the matter... as if there was nothing amiss to make him cry. That's why I asked in a previous post if we don't see what others see. I just feel as if this is how it is and this is how we'll stay.

Right, he wants a foot massage so I'm off for now. xxx

Veebee
Posts: 93
Joined: Thu Feb 16, 2017 4:31 pm

Re: Hello

Postby Veebee » Thu Feb 23, 2017 2:59 pm

Elaine, in my haste I forgot to ask about Pete! Is he feeling better today? xxx

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Hello

Postby Veema » Thu Feb 23, 2017 7:07 pm

Nige's bum went there too...it was really uncomfortable for him. He made himself a ring out of stuffed socks...I've still got it...said it was more comfy than anything the nurses brought.

Vx

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Hello

Postby Proud Wife » Thu Feb 23, 2017 7:23 pm

So did my hubby's - his bottom just became skin and bone in the end. Ask for a pressure relief pillow for him to sit on, that will help too.

No, we don't see what others see. I offered my sister in law to have one my photos of hubby blown up for her and when I gave her the choices, she just said I don't want cancer pictures of my brother. She lost her husband to kidney cancer a year before and I saw the same when I looked at his pictures. It's not that you don't want to see, you just don't see because you are there 24/7.

Stay strong lovely lady. You can do it xx

Veebee
Posts: 93
Joined: Thu Feb 16, 2017 4:31 pm

Re: Hello

Postby Veebee » Thu Feb 23, 2017 9:18 pm

We have the pressure cushion and I had a piece of sheepskin type fabric which I've rolled up and Allan has wedged it under one buttock to raise it slightly. He says it's taken the weight off. The DN has ordered a mattress and in the meantime he's using a very soft pillow to raise one side in bed. He can't lay on his side as it hurts his stomach. I hope this posts. I'm having error messages again when I post longer posts. I think it's telling me to shut up!

Justamo
Posts: 473
Joined: Sun Sep 04, 2016 10:38 pm

Re: Hello

Postby Justamo » Thu Feb 23, 2017 9:49 pm

Hi Veebee. Sorry to hear about the pressure sore; I got one while I was having cancer treatment and now if I'm in bed for longer than a day it starts up again. I found that putting a cushion underneath the sheet worked better than trying to sit straight onto it.

There is some very good fleece called Vetbed Original which you can probably buy online - I'm sure Amazon will have it. It's like sheepskin, but synthetic so easier to keep clean and fresh.

We don't see what others see. I'm ashamed to say that I didn't realise how much weight Peter lost until I looked at the scales. And I didn't notice that he'd shaved off his horrible moustache until he pointed it out. We've spent a lot more time together since he's been ill because a lot of it is spent sitting in waiting rooms and hunting for parking places at the hospital - before he was ill we were both doing separate things during the day and just sat down together in the evenings. And he lost an awful lot of confidence when he was first diagnosed - I felt a bit like his mother when I was taking him around to various surgeries and translating doctor-speak into English because he wouldn't listen properly.

You sound quite calm and collected, I hope it stays that way for a little while. Too many highs and lows with this awful illness.
Take care
Love Mo

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Hello

Postby Elaine123 » Fri Feb 24, 2017 8:27 am

Hi Veebee I hope Allen has the mattress delivered and that it makes a difference to his bedsores , it must be horrendous just wanting to lie comfortably and to have to resort to continually manoeuvring your body to get in the least uncomfortable position..happy that the district nurse was in it just makes you feel a bit easier as it reinforces that you are doing everything right and also shortcut getting what Allen needs at this moment as to get a mattress by yourself you would have probably have needed to phone half the country. Well I guess I was tempting fate writing that Pete had two free weeks to get built up and celebrating that we didn't have to deal with the chemo side effects this weekend. Just after 11pm last night Pete stood up and next thing his nose started to bleed very heavily blood and large clots. Eventually I said right you are going up to A&E. I phoned my friend across the road who is a nurse to ask her advice as he was refusing to go saying it will stop soon by this time there was blood everywhere....she knocked on our other neighbours door who is also a nurse. They seen how scared he was of going up to hospital after the last shambles so they decided to pack his nose and this stopped the bleeding shortly after. I was worried with his platelets being low this week. So far this week it has been nosebleeds and rashes ( blood spots under the skin ) and four days of continual hiccups. What next ?. Sorry Veebee I and clogging up your post with Petes problems.
I really hope that Allen is far more comfortable on the new mattress and gets some respite from his pressure sores this weekend. No wonder that everyone on here talks about it like being on a roller coaster because it is never steady. I hope you both have a good weekend and Allen is more comfortable . Stay strong
Elaine
X

Veebee
Posts: 93
Joined: Thu Feb 16, 2017 4:31 pm

Re: Hello

Postby Veebee » Fri Feb 24, 2017 10:01 am

Oh, Elaine....I hope Pete improves and you're okay. The feeling of dread with every setback is just awful. I'm not surprised he didn't want to go to A&E...He could have been sat there in discomfort for hours. When Allan was in hospital the other week after bleeding from the bladder he couldn't wait to get home. He was on a trolley in a small side ward for 22 hours before he got onto the urology ward and although we know the nurses are busy I had to wonder if they'd read his notes. He had to explain about the creons and his oromorph and insisted they weren't locked up. The oncologist came to see him on the ward and sorted it out but it's another hurdle they don't need to jump when they're ill and frightened. Pete naturally wants to be at home and I'm pleased that the bleeding has stopped. xxx