Hello

[Veebee]

Hi. I've been a lurker for a few months and have taken the plunge, so to speak. My husband was diagnosed last October 2016 after being ill for 9 months. He also has bladder cancer but this hasn't been a major problem and has taken a backseat since PC was diagnosed. He had a biliary stent fitted before Christmas because of the jaundice and had 1 round of chemo but it caused the bladder to bleed and he spent 2 nights in hospital on antibiotics so he's decided not to have anymore. The Macmillan nurse calls every week and the DN calls every 2 weeks. The GP also calls every 2 weeks. He's on 120mg MST daily with Oromorph as and when he feels he needs it. He's also on dexomthasone to increase his appetite which isn't too bad but, obviously, nothing like it used to be. He lost 4 stones in weight from Christmas 2015 upto May 2016. This seems to have stabilised somewhat but he's lost a lot of muscle.

He retired 3 years ago at age 65 and I retired last May. Our retirement plans are different to what we planned. He loved his fishing and going for a pint and we often visited the East Coast. Last year was taken up with hospital appts. and now they've come to an end as he's just on palliative care. His mobility is fairly bad as his feet have swollen and he just doesn't have the energy. His days are spent watching the TV and fishing videos. This morning I said I was going to tackle the garden, as it's been neglected, (something else that he used to do) and he got very emotional and said he didn't want to sit on his own. This is so unlike him. We've been married for 50 years and have never been joined at the hip, so to speak. Now he depends on me totally to help him shower and bring him his meals and he can't do anything but make the odd cup of tea. Hope I haven't rabbited on too much for a first post!

[Justamo]

Hello Veebee. Welcome to Planet PC.

I think I said in almost my first post that my husband's illness had made us so much closer. We have always been very independent of each other, to the point of having separate holidays - Peter loves golf and I love weird and grubby places - but when he was first diagnosed I didn't want to leave his side. He was very clingy and wouldn't even answer direct questions at the doctor's, just looked at me to speak for him. Things are better now, and I leave him for a couple of hours at a time so that I can get a swim or some exercise but I'm always anxious when I'm away from him. And then I return and find that he's been fast asleep while I've been pelting around town, parking on yellow lines and rushing to get home !

You have described your husband's (what is his name ?) palliative care, but who's caring for you ? Are you getting any support for yourself, or don't you feel you need it ? Do you have adult children ? Sisters ? Other family ? Is there a MacMillan Hospice Unit near you ? Marmalade will tell you about the courses she went on and which she found so very helpful. You are clearly doing a wonderful job of looking after your beloved husband, but I'm concerned that you should have some sort of safety valve yourself. I have taken MST and Oromorph myself and found that it made me feel quite depressed and low. It might be making him feel emotional and sad - might be worth mentioning to the doctor or nurse. Easy enough to give him another tablet to lift his mood a little.

If he won't let you leave him alone, wait till he has a nap and then divide up the necessary jobs into short bursts. I take about three days to cut our grass - I find it very heavy going but it has to be done and until I feel like paying someone else to do it then it's my problem.

You'll get all sorts of suggestions and helpful advice on this forum, you've come to just the right place. No strangers on here - it's populated by friends you haven't met yet.

Take care,

Love Mo

[Elaine123]

Hi Veebee welcome.

Sorry to hear that your hubby couldn't manage the chemo. Your post mirrors ours exactly Pete retired at 65 three years ago and took the jaundice in Oct 16 and had a biliary stent fitted in Dec 16 and started chemo just before Xmas. He loved to fish and was looking forward to this years Mackeral season starting. The best laid plans of men and mice as they say. As Mo said its essential you also have supports you can call on. You will benefit greatly being on the forum as it can be a lifeline especially at the weekend when most nurses etc are not available there is always someone that will come to your aid if you post asking for help. Marmalade can give you a huge amount of information about palliative care and courses for careers. Wishing you both a good weekend.

Elaine

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[Veema]

Welcome Veebee...yours is a totally different situation to mine...but we're all here to support you through this and help with any questions you may have.

Like the others have said, you're every bit as important in this equation...you need to keep healthy because it can get tough. Our hospice provided all sorts of things for carers, unfortunately we weren't referred to palliative care until just before Nige died, so didn't have access to all that stuff, didn't know about the benefits we could have claimed right from his diagnosis...which you will also be entitled to.

Good luck with it.

Vx

[Veebee]

Hello Justamo and Elaine ..His name is Allan. We have a good family network. 2 daughters, a son, my younger sister who we brought up with our children. Allan has 2 brothers who visit. One of them comes once a week from over 100 miles away. They're all supportive and our daughters, sister and one brother are all within a short drive, so we're lucky in that respect. I've been able to meet up with friends occasionally for a coffee and catch up for a couple of hours. I go shopping for a couple of hours once a week and it's not been a problem but this morning he seemed to panic at the thought of me going into the garden. I'm coping ok. I've worked with the elderly so personal care isn't a problem at all. We talked about him being depressed and he knows he's very low.The GP is coming on Monday and I'll be bringing this up. She's very good as are all the professionals who come. Very easy and approachable. He's different again this afternoon... watching the sport and in a much better mood.It was the panicking that threw me as it's so unlike him. Thank you to both for your advice.

[Veebee]

Hi Veema We have all the info from local cancer care where they give massages etc and where you can call for a coffee and a chat but he's not interested.We have claimed AA which I didn't know about but an ex work colleague told us about it as she got it for her mother. Like most people, because Allan's always worked we've never claimed a benefit before but it was easy to claim under the special rules and tbh it's come in handy because the heating's been on a lot. I feel that we do have plenty of support. Sorry to hear about your husband. I'll read back on your story. Take care.

[Didge]

Hi Veebee. Perhaps if Allan is feeling emotional he could sit with you in the garden while you work. Does he have a wheelchair for when he is feeling too tired? Sometimes it's a case of finding compromises so that you can do these things. Hopefully spring weather is coming but I still think it lifts the spirits to be out in the fresh air for a bit even if it is cold as long as he is wrapped up. Could he go fishing with a friend although I suppose mackerel is sea fishing so maybe that is not possible. My partner went to formula one 4 weeks before he died with friends. They arranged everything, wheelchair if he needed it, access to restricted areas. He had a wonderful day even though he was very ill by then. I think it's important to aim for what is possible with adaptation as it can be depressing to see ones enjoyments slipping away. X

[Veebee]

Hi Didge I think it's a bit too cold for him to sit in the garden just yet. Maybe when it's warmed up a bit in the Spring. Allan used to coarse fish, it's Elaine's husband who fished for mackerel. His fishing mates have offered to take him...he wouldn't have to do anything, just sit and watch but he really has lost interest in it.He's fished from being 15 and he misses it so much but he won't go. There's a canal a couple of miles away from us where you can park very near and get to the benches but he won't go there either. He used to love to sit by the canal and look at the water for a while. It's very frustrating. xx

[Guest]

Hi Veebee, I'm so sorry that you and Allan are facing this awful disease. I agree with other posters that perhaps he might benefit from some medication to lift his mood.

Sadly, now that he is not having any treatment his condition will worsen and it must be very hard for anyone to knowingly face their own demise. I'm not surprised that he occasionally feels upset or worried. I'm sure you are the same. On the whole these chaps are incredibly brave and courageous but sometimes it just overwhelms them, and us! I'm not sure whether you are able to talk about it but if you can I think all you can do is reassure him that you will be going on the journey with him and that there is nothing to worry about. Does he have any religious faith? Clergy are incredibly good at finding the right words and reassurance, it's a huge part of their job.

The others have made the point that you need to look after yourself too and they are right. I found the hospice caring and coping courses really valuable. Very practical things about diet, exercises, finance, what you might expect to happen and what to do about it. Filling in Treatment Escalation Plans, dealing with organising your husbands affairs, powers of attorney and end of life issues and questions. It sounds as if you have good support so you may have already done the courses.

My husband did not have chemo or other treatments and my thread deatails our story it's called "Our journey without chemo". No two people are the same but it may help with some ideas.

When dealing with a very life limiting disease like PC and treatments have been exhausted the prognosis is not good so every day, hour and minute you have becomes precious. Let others take the strain of gardening, housework and all the chores you don't feel like doing and you and Allan have the best time you can together. Some times all they need is to know you are near by doing normal things.

I send you love and prayers,

Marmalade xxxx

[sandraW]

Hi Veebee, and welcome. My husband Trevor,used to get upset too when I had to do the gardening. He felt it was his domain, he stayed really well until the last 6 weeks of his life, but then like Allan he just couldn't manage it any more. I think it just makes them feel a bit useless and brings it all home to them, its understandable in the circumstances even though it very upsetting for us. They just want to be able to carry on as normal, we did find if it was a nice day, Trevor would spend and hour in the garden with me, doing 10 minutes and then having a rest, but at least it kept him going, perhaps you could get Allan to choose some bedding plants so at least he will feel a bit involved.

Its hard to take time for yourself, because you just want to be there and look after them , but you sound as though you have lots of support around you, take care love sandrax xx

[Veebee]

Thank you for your kind replies. I think that the low feeling they have is made worse by seeing their wives doing things that they normally do. For instance, Allan bought a great big tv the other week... says he might as well as most of his time is spent watching it. Our son in law came and set it up but I knew he was itching to be "in control". The day after I said I'd move the BT box into another room to connect it to the small tv we have in there as it's not needed with the new TV. He acted as though I wasn't competent enough to carry out this easy task but then admitted it was because he should be doing it. We have a stove in the living room and I'm bringing in the coal and logs and that upsets him too although I've done it often but now he can't do it he must feel emasculated and I understand that. Thank you for listening to my ramblings... it's bedtime for me. Allan is already tucked up and asleep. xx

[sandraW]

Veebee, you are so right its okay for us to do these things when they are hale and hearty and they can't be bothered but its understandable that they feel as they do.

That was the hardest thing for Trevor to cope with that he was so tired whether from the disease or the chemo treatment. He used to sleep a third of Friday, half of Saturday and ALL of Sunday until he surfaced usually about 8 pm and managed to stay away until 11pm, by the Monday he was usually a lot brighter, that was the week he was on chemo.

He always did the gardening and enjoyed it it was his domain and when I had to cut the grass, I didn't do it right, if fact when I do it now I can hear him still saying no, not like that, so I just say back and aloud I am doing my best if its not good enough hard luck mate.

I hope you and Allen had a good rest and a peaceful day today, love sandrax xx

[Veebee]

Hi we've had a good day, thanks. Allan's cut down on oromorph through the day as the nurse upped his MST and he's more alert. I laughed when I read that you didn't cut the grass properly...just after Allan retired I was vacuuming a rug and he said that I wasn't doing it right!! I asked when he last vacuumed and he said "I'm always doing it... I've done it twice!

I've just given him a foot massage which I do twice a day. He says his feet always feel better afterwards. I read Marmalade's post about the sunflower cream. I ordered it last night on the 'net and it was delivered this morning. Unbelievable that it arrived so quickly. I rubbed some into his feet as they're getting dry. After his shower I'll rub some onto his legs as they're getting "crepey" with loose skin because he's lost so much weight. Keep on keeping on, as Alan Bennett says xx

[Proud Wife]

Hello Veebee and welcome. I'm only sorry you find yourself here. I was apparently unable to load the dishwasher properly! It's good that the nurse has upped Allan's MST - the Oramorph is there for breakthrough pain and if it's necessary to keep taking it throughout the day, then that's a very clear sign that MST needs to be upped.

You don't say how long Allan has been on the dexamethasone for but my hubby was on it constantly for basically a whole year in order, albeit on a low dose to improve his sense of wellbeing and appetite. At the end, he became quite puffy from it and also suffered very badly from loss of muscle which seem to come on almost overnight. I strongly believe the dexamethasone, even with it's side effects prolonged his life and I'm grateful for that, whether it was right or wrong to be on them so long.

Keep on keeping on!

Much love

PW xx

[Veebee]

Hello Proud Wife....Allan has only been on the dexamethosone for about 3 weeks. The Macmillan nurse wanted him on it sooner but he had been on prednisolone and was on a reducing dose. When he got down to 5mg prednisolone he was switched to the dexamethosone. You see, Allan was misdiagnosed with vasculitis of the arteries in his stomach last April and that's why he was on prednisolone. He began to be ill at Christmas 2015...loss of appetite, upper stomach pain and drastic weight loss from Jan.to March. He had an endoscopy, a CT scan and a PET scan in the first 3 months of 2016 and he was diagnosed with vasculitis. In September he had a routine medication review at the doc's surgery and his liver enzymes were raised. He had another scan and was then diagnosed with PC in October. We were told he may never have had vasculitis but by this time he'd been on the prednisolone for a while and it had to be reduced. So, that's our story in a nutshell. Everyone seems to have the same ups and downs with this disease but you're all so strong and supportive even after your stressful life experiences. Thank you xx

[Guest]

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]

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]

I had a problem posting...

[Veebee]

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]

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]

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

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[Guest]

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]

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]

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

[Veema]

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