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Veebee
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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

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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!

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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

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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

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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

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  • 2 weeks later...

Hello again...just a couple of questions that I have after reading through a lot of posts. I'm certain that somebody will be able to answer them. Why do people have different types of chemo? I never realised there were so many variants. Are some more aggressive than others? What are the markers that are often mentioned? Are they only relevant when the patient is on chemo? Thanks in advance Vee x

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Hi there Veebee I am unsure about the different types of chemo. Pete is on Abraxane and Gemcitibane three weeks on and one week off. I don't know if this can be considered an aggressive therapy but he has had quite a lot of side effects from it and also one episode of neutropenic sepsis. He starts his third cycle this Thursday and then in a months time he gets a ct scan. I know others are on folfirnex but that seems to be given to more physically fi younger people. Some here will be able to enlighten you further to this question. I hope Allen had a good weekend. Hugs

Elaine

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Thanks Elaine....because Allan's just on palliative we don't have indications of whether the disease is progressing or not. But,there seems to be so much worry waiting for blood or scan results for patients on chemo. Worry all round. Take care xx

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I think it depends on many things...I believe folfirinox was originally a second line treatment for when there was spread to other parts of the body, but I think it also depends on where you are in the country and how fit you are (folfirinox is supposed to be a particularly gruelling regime)...Nige got folfirinox from the word go...and it worked for a while and he tolerated it well...some oncologists go for gemcap, some just gemcitibine (sp?), if you're lucky you can get abraxane.


You're right...bloods and scan results always put me on edge...I found a printout of Nige's CA19 numbers the other day in the back of my diary. CA19 blood markers are an indication (and only an indication) on the activity of the tumour...if the tumour is active, the numbers tend to trend upwards, a downward trend often indicates that the tumour is not active or becoming less so...but they can't be relied upon by themselves.


Hope that helps


Vx

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  • 2 weeks later...

Hello Vee,

I've just read your post on Elaine's thread, and you sound so weary. I know what you mean about people asking how Allan is all the time. It does get wearing, especially if there isn't any particularly good news to share. And then people ask brightly, "And what about YOU. How are you COPING ?" What do they think you are going to say ? "I'm just great thanks, having a ball". And then they say, "If there's anything I can do, just let me know". If you rang them up and asked them to finish off the ironing they would vanish off the face of the earth.


Some dear friends of mine were shocked to discover that their 13-year old daughter had cancer of the bone in her leg. They had to spend a lot of time 150 miles away from home at the specialist cancer centre, and they set up a special e-mail address to share all the weekly news. (Incidentally, that child is now a 28-year old woman, living in France, and holds a very senior teaching post. There are some happy endings). The weekly e-mails saved a lot of precious home time answering the phone, and meant that they could devote some quality time to their other daughter, aged 11 at the time.


I don't think that a BCC e-mail is the answer to our 'kind enquiry' problem, it's just another little burden to bear. Along with trying to think of tempting meals, gaining all the weight your patient has lost, and getting sick of washing and ironing pyjamas. But I daresay that Marmalade, Proud Wife and Veema would each give their right arm to have to wash and iron pyjamas again. . . .


This forum certainly keeps you grounded, that's for sure. Anyway, Veebee, what I meant to say was just have a good old moan on here any time you want. Nobody will judge you, everybody understands. We all have empathy pouring out of our pores, if you know what I mean.


So just keep on keeping on. And if you'd like to finish my ironing, let me know and I'll get it couriered to you.

Love, Mo

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Hi Vee I have this picture now of a large box of Mo's ironing arriving on your doorstep lol. I know exactly what you mean about retelling the tale to everyone that asks , I know they mean well but I long for someone just to stop me and say something normal like " how are you this week you are looking well " instead of the first words being " I got quite a shock when I seen Pete this week " arrgghh.

How is Allan this week .....omg now I'm doing it. Pretend I didn't say that , how are YOU this week. I am off this morning for my mammogram at the mobile breast screening unit and it's not one of the things I look forward to. I always find it very uncomfortable and make squirming noises which upsets the nurse somewhat. However it's a necessity and must be done. I really hope you are both having a good week. Hugs

Elaine

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I've been framing messen, as we say in the North, and am in a better frame of mind. So, thanks, Mo and Elaine, and please don't send the ironing! Actually, we've had a good few days, Allan was hardly eating anything at the beginning of the week and today he's had porridge, a beef sandwich and wants sausage and mash for tea. He only has small portions but the change is remarkable. We have a hospital bed in the dining room because of the pressure sore...The DN says it's not getting worse and I believe he's better for the resting. He's far more comfortable than shuffling about on the Repose cushion. Mammograms are an uncomfortable nuisance but are necessary. ..I had a cancerous lump in 2011 picked up by a routine mammogram. If only PC was as easy to spot as a breast lump. I'm going to clean and oil my sewing machine this afternoon while the old man's watching Cheltenham. My sewing has taken a back seat these past months. Have a good day. Vee xxx

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  • 1 month later...

Hello again....because of the sad news on the forum in the past week I felt uneasy posting about our situation but I know you'll understand , so.......Allan has gained 6lbs in weight and we're fixating on this as it's the first gain since he began to be ill over a year ago. He's lost over 5 stone so this gain has lifted both our spirits. His appetite continues to be reasonably good and his mobility is better and his pressure sore is almost healed. I hardly dare hope for more. My thoughts are with Elaine and Ruthus' family but I wanted to share our little bit of good news.



Love Vee xxx

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Vee, your little bit of good news is a real tonic and I'm so pleased you decided to post.


I hope Allan continues in the same vein for a very long time to come.


Love and best wishes

W&M xx

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Super news Veebee,


Please don't ever feel you can't post because another is suffering, you and Alan and your story are every bit as important and dear to us. Posting on here is a great release and comfort to many and it is really important that you feel you can post at any time. When I lost Louis it did not stop me rejoicing in other peoples good news because I knew what a difference it makes.


How splendid that you are both feeling buoyed up by the weight gain, these are the things we hang on to and take pleasure in and no one would deny you that. Elaine calls them diamond days and they are.


Hope you have a lovely evening


Marmalade xx

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  • 2 weeks later...

Hello again.....since my last post things here are on the downward slope again. Allan hasn't eaten properly all this week...just a spoonful or two of porridge or a yogurt but we've been here before and then his appetite has rallied again. I seem to place a lot of emphasis on eating ! He's been very breathless after walking to the bathroom but this goes away when he's rested for a few minutes....no stairs to climb though, thank goodness. He's sleeping for much of the day but does sit up for an hour or two in between. The doctor came out yesterday and gave him a good examination and she doesn't think he has fluid on his lungs as he's not coughing anything up. The nurse offered him a zimmer and he refused it but I'm trying to get him to change his mind...not easy, I can tell you. When he's laid down he looks terrible but when he sits up his colour improves....has anybody else noticed this in their patient? Am I over analysing? 😐


I'm going out today with 3 old school friends for a bite to eat and a catch up. One of them lives in London and is up North for a meeting so we don't often get together....hard to believe that we've all been friends since we were eleven, so, that's 57 years....a long time. A couple of Allan's fishing friends will be coming from Lincolnshire to sort out the rest of his fishing tackle in the garage so he won't be alone for too long. I'm so looking forward to getting out for a few hours.


Hope everyone has as good a weekend as you can and love to all.



Vee xxx

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Dear Veebee,


Sorry that Allan has not been too well, sadly this is why we call it the roller coaster, one can never tell which way things will go next.


I understand the zimmer thing as Louis didn't want his but we just explained that it was a way of him having a bit of independence and he did use it for a day or two. Eventually he became too weak to even walk the couple of paces to the loo. Allan is a poorly chap and muscle wastage, weakness and colour changes are all part of this horrible disease. I wish I could explain the rallies and the downturns but I can't, they seemed to have no logic to me.


It's hard to judge where Allan is on his journey and of course they all go through loss of appetite and then pick up again but eventually they all stop wanting to eat and it can actually pain them to do so. Your doctor will be the best judge of this. My rule was if he wants to eat feed him and if he doesn't, let him be. This can be very hard on the carers because feeding them is something we can do and feel as if we are helping. Increased sleeping can be due to increasing fatigue, the body is too weak to keep everything running so bit by bit things close down and the body conserves energy. It can equally be the effect of pain killing drugs or both things together.


If you have not already done so have a chat with your doctor or the palliative care team about what you might expect as things progress. Allan may rally and have another good up swing but knowing what to expect can give you a bit of confidence to manage things.


We kept flavoured ice cubes in the freezer to crush when Louis found swallowing difficult and sometimes, little tiny squares of food left near him tempted him to eat.


I do hope he has picked up a bit and all of this is irrelevant but if I can be of any support please ask the nurses to put you in touch with me.


Love to you both,


Marmalade xx

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Hello Veebee.


I hope you enjoyed your Ladies Who Lunch event on Saturday. Even a trip to Tesco can be an Event if you've been concentrating on caring to the exclusion of all else !


Nice that Alan's friends have been to see him. Peter has been housebound since Thursday feeling grotty since last week's chemo, and feeling very sorry for himself. He's uncomfortable sitting in an armchair, and if he lies on his bed he goes to sleep, but he is very tired so probably having a nap is the best thing he can do at present. And, of course, Boris joins in (complete with mouse) and snuggles down too. Peter's friends phone to see how he is and the usual routine is : phone rings, Peter swears, I answer it, filter out unwanted callers, and then pass him the phone. The next words I hear are "Oh, I'm fine". Which is a whopping great big lie, because if he were fine he wouldn't be in bed, but that's men for you.


We've got a bright and sunny May Day here, so I may persuade Peter to come out for a short trip somewhere. There is a sale on at a local woollen mill and they sell nice coffee, so we may have a jaunt later on. And of course, there's always garden centres ! We'll see how he is after his shower.


Try to have a good day yourself.

Love, Mo

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Oh, yes Mo....We play the same scenario with phone calls...we have the in and out of bed and not fancying anything to eat and then he's talking to his brother on the phone and telling him that he's ok.


We had a good old natter over lunch...4 women all talking and laughing at the same time ...we can talk for England and trying to keep track of where everyone is at in their life gets you out of your own bubble. One of them has gone through a nasty divorce and has developed osteoarthritis while still running a long standing business. Another has money troubles and is unhappy in her marriage. The third one is very happy with her life and her and her hubby are enjoying retirement. All different situations so loads to talk about! Allan enjoyed his mates' visit and they dId a great job of clearing the rest of his fishing tackle ( and gave him a good price) . I thought it would bother him that his precious tackle was gone. He was fanatical about keeping it clean and in good order but he said he's glad they've taken it as it's one less job for me later. I appreciate their help.


I hope you can get Peter out for a while to take advantage of the sunshine and bag a few bargains.

You made me laugh the other day when you'd sewn a biscuit into the bag lining!


Keep on keeping on and best foot forward and all that...love to Boris.


Vee xxx

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Proud Wife

Vee, I hope you managed to enjoy your day out. I remember having one day out with some friends without having to talk about CANCER and it was wonderful. We all need that.


I have to echo Marmalade's comments about eating. The same applies to liquids too. It is so hard to sit back and watch but it's not Allan's fault and he'd eat if he could. I was repeatedly told by the nursing staff not to nag over food because it would make matters worse.


With regard to breathlessness, one good tip is to make sure you have a fan in the house, a gentle waft of air in the patient's face can sometimes help with the panic of not being able to breathe properly. It would also be good to have a hand held fan in reach for the same purpose.


Thinking of you

PW xx

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Thanks for the tip PW. I have a hand held fan somewhere that I used for the hot flushes!

You're right about time out from cancer talk and worries. It was a great few hours chatting and not having to worry about getting back as Allan wasn't alone. Oddly enough it was the same feeling as getting out without the children when they were little. Is that an odd comparison? I hope that your son has found some help ....my younger sister was only 9 when both our parents died in the same year. I was 26 and she came to live with us and we had temper tantrums but no real emotion from her until it was her 18th birthday. We gave her a gold bracelet and she sobbed and sobbed so I think she'd carried her grief all that time and the occasion brought it to the fore. This was in the 70s and there was no mention at the time of any assistance for a child who'd had to deal with such a momentous event. She's got a good job now and was married to a lovely man for 20 years but her marriage broke up because she wouldn't have a baby at any price and he wanted a family. I believe she was afraid to commit in case she died young and her mother in law who really was like a mother to her, thought the same. Your son is older but the loss of a parent is dreadful. I sincerely hope he takes advantage of any help he's offered. That's me rabbiting on again.....so goodnight and take care.


Love Veexxxx

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Elaine123

Hi Vee hope Allen is having a better week , I know what you mean about the eating issue ,I used to have nightmares about that and feel I was failing Pete and if he didn't eat I got caught up in all the " can I make you this can I make you that " and I now know his appetite was something that I couldn't control and it may have been easier on him if I had just went with the flow. I am glad you enjoyed your girls day out you need it caring on a 24 hour basis is very tiring. It was good to catch up with your posts again and it feels good to be among friends . I hope Allen has rallied again and you take care

Elaine

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