24/7 its non stop since diagnosis

[Jool2504]

Morning,

Thought it would be easier if I also started a new post. Sorry been away from the forum for a while had a very stressful few days again.

Its 24/7 since Bill was diagnosed and seems to be getting worse. His 4th & 5th toes on his right foot are now black and the first three are constantly cold and changing colour as they days go on, he has a blockage in this groin but the blood seems to be getting everywhere except his toes. He also now has cellulosis (think thats what its called) his legs and feet are terribly swollen, he was admitted to hospital on Monday with it, they have increased his pain meds so he can cope with keeping his feet up, so now there up and slightly down during the day, he can hardly walk when he first gets up. Not quite got the height right at home so no increase in swelling for a couple of days, he came home on Thursday. Another nightmare departure with the ward. Emailing a complaint to the hospital.

Chemo is going well, his tumor markers have not changed which I get is better than them getting worse, he has another 2 sessions then a week off, they have given him an oncology appointment the week he has no chemo, great!!!!! We are hoping for a couple of days away. He seems quite good in himself and he is hungry.... Oncologist confirmed it is a tumor in his pancreas and surrounding glands are affected. Only taken 3 months for us to get some information that makes some sense.

Gabapentine is working well with the slow increase, they put him back on amytriptlyne (sorry can't spell it) in the hospital so he's away with the fairies most of the time, I've took him off it as Macmillan consultant didn't feel it benefitted him. Just a few days of his being odd before it wears off.... I'm cruel but he does make me giggle when hes talking rubbish whilst he's asleep and moving his hands and arms around.

Anyway enough about us how is everyone else, sending you all a big hug. Suns shinning now, we had snow this morning.

Take care all.

Jools & William.

[DRAD3]

Hi Jools

So lovely to hear from you and how you and Bill are getting on but sorry to hear about the continuing circulation problems and the difficulty with mobility - this must be so frustrating and distressing for him - is there nothing that can be done to improve things? Good news that the chemo is having an effect and, as you say, no change is better than a move in the wrong direction! You did make me smile when you said about giggling at his talking rubbish - I can remember the same - you are not cruel, it is the utter ridiculousness of the situation that can only make you smile - the alternative is not a road to go down. You keep giggling and being positive, Jools, that is the key. You are a star. lots of love

Deb

x

[Jool2504]

Hi Deb,

Theres nothing they can do for Bills toes, they will only amputate by surgery if they have to they believe they will self amputate, we thought he would loose one and part of another now I am worried about the other three, they have no heat to them at all and are changing colour each day. So currently looking at loosing 2 toes initially. The only thing that can help is keeping his feet raised for as long as possible, the increased pain meds are helping him to do that, there also making him really sleepy.

[susikus]

Lovely to get an update on how Bill is doing, thank you Jools. Isn't it amazing how pc causes so many different symptoms - none of our stories are the same despite having much in common. I am so glad Bill is home again. Enjoy the snow! And don't worry about the toes - they'll do their own thing and Bill doesn't really need them any more. Lots of love and hugs to you, Sue, xxx

[Jool2504]

Afternoon,

thanks for all your posts.

Blood tests at the Drs this morning, I also asked to see Nurse practitioner so I could get his meds sorted, all on same repeat and larger dose tablets so he takes less individual ones. The nurse just put us straight into the Dr, the Dr sorted the meds dosage but not the repeats. Bill fell asleep a few times whilst sitting there, the Dr said from now on don't bring Bill to the surgery the Dr and phlebotomist will come to us, I am hoping this is just because its the infection and bug season and keeping his free from germs.

He didn't look at his feet but said he will loose all the right toes and then possibly the left, he is also showing signs of the same thing in his left fingers.

Now waiting for district nurse to come and look at his toes and redress them, we have 2 walking frames coming tomorrow one which will take his full weight and another for walking when out, his new lightweight wheelchairs due tomorrow afternoon to.

Well must rush as he's just woke up and he'd go nuts if he knew I was on here.

Take care all.

Jools

[DRAD3]

Hi Jools

So glad to hear that the doctor and team are going to make life easier for you and come out to you. That will be less tiring for Bill and, as you say, reduce risk of infection. So wonderful to hear about all the equipment you are gathering to ensure that Bill can get out and about - nothing stops you two does it? You are inspiring.

Much love

Deb

x

[Jool2504]

Hi,

Bills not quite so confused today and a bit more alert when hes awake. His big blister has burst on his foot during the night, so I have took his dressing off as it was all wet and starting to stick, as advised by the District Nurse I have called them out just to check it. His legs are getting more swollen and he is putting his legs up a lot of the time, I am concerned its travelling North its now swollen past his knees into his thighs.

The Dr said when he looses his toes he will be bedridden, no way, I will not allow him to fade away in bed. His new wheelchair has arrived so I can send the old one back with my Dad, its a lot lighter and more bits come off to make it smaller for the back of the car. No sign of the walkers yet.

We have a week off chemo in a couple of weeks and I was thinking of taking him away to a family members cabin a couple of hours away, a friend says she doubts the Drs will allow him to go away, has anyone experienced this, he's fine in himself just the legs and toes!

I just cannot allow him to sit in the house, I only take him out a couple of times a week or visit someone on the way back from a medical appt. I know there will be a time when this is impossible but don't think hes at that stage yet, unless I am being delusional.

Regards

[yorkypaul]

Hi Jools

You and Bill are an inspiration! I really admire your guts and determination! I can understand you wanting to go away to the cabin. My only reservation would be if you needed medical care quickly would it be readily available? I have already experienced how this vile disease keeps moving the goalposts to surprise us.

I'm glad Bill has you on his team!

Thinking of you both. Hugs,

Paul

[DRAD3]

Jools - only you and Bill can decide what you want to do. You know the reality of it - you are not daft. Go with your heart, guided by your head and you won't go wrong.

Right behind you!

Deb

x

[yorkypaul]

Hi Jools

Deb is right. Do whatever feels right. If there was an issue, you'd just get on and deal with it. Live life.

Hugs,

Paul

[Jool2504]

Not the news I was expecting quite so soon!

D Nurse came this afternoon as the blisters on Bills foot had burst, thankfully it was one of the nurses who has seen him in the last couple of weeks, she was shocked at his cellulitis and called the GP, same one as saw him yesterday he came straight out. Won't give him antibiotics as the GP feels he won't tolerate them after last lot made it worse, he stood there and said I think its time you considered going into the hospice!!!!!!!!!!!!!!

Bill didn't take it in as he was drifting in and out of sleep. GP said I should show chemo nurses his feet & legs as he feels they will stop his chemo. He also feels he should be in bed, but I said he wasn't going to be bedridden whilst I was around and he is comfortable on the sofa with his feet up. Privately we talked and he said he is concerned that he will get an infection he cannot shake off as he is really starting to fill up with fluid, OMG.......

I've left a message for his specialist nurse to meet us in the chemo suite and will also speak to his macmillan nurse, the District Nurse said she will get the Sister who we know to come and see us earlier than her planned visit on Friday. Is there something I am not seeing....

Bills neice came over this evening and we tried talking him into a short stay at the hospice but he has to agree to give it at least 4 days, if he still doesn't like it we'll bring him home.

Woke at 2am realising he'd not come back to bed after stumbling off with his zimmer frame to the toilet, he hardly has the strength to use it, plus he's half asleep, found his keeled over on the sofa fast asleep. I find I am listening for every breath now.

Hoping after a few days in respite he might improve and be stronger to come home but return as a day patient once a week.

Don't know what to do, I've told his son but he has the lurgy so cannot come near us, my parents are coming tomorrow. I thought we were doing ok apart from the flamin toes.

Sorry to have gone on.

J

[PCUK Nurse Jeni]

Hi Jools,

Thanks for emailing us on the support line.

I will reply to you via email.

Hang on in there Jools. Very tough right now - and you have been so strong.

Jeni.

[susikus]

Hugs Jools, am thinking of you and sending you virtual hugs. Let us know when you can how things are going - you will be feeling very busy right now. Lots of love, Sue, xxx

[DRAD3]

Hi Jools - what an awful time you and Bill are having. I read your post late last night and have been thinking about you and hoping with all my heart that things aren't as bleak as they seemed. I know how difficult it is and how worrying and I remember the constant monitoring - I used to get on Gary's nerves I assure you, with my fussing and following him around - I didn't want him out of my sight! Do let us know how things have been today but know that we are all sending you our love and our support.

Deb

x

[yorkypaul]

Hi Jools

Have been thinking of you both since reading your post. I hope there has been some improvement for Bill. Let us know when you get a chance. Sending love and prayers to you both.

Hugs, Paul

[Jool2504]

Hi Everyone,

Sorry I've not been on here since tuesday.

Bill went to chemo decision made to cancel it, his legs were so bad with cellulitis and water retention, he was admitted straight to the hospice.

The hospice have said he is not as bad as they expected. Hes been there since wednesday, the staff are fantastic, he's in a section with 3 other guys which hes not very keen on but at least he can people watch. They have made some changes to his meds and in himself he is better but his so uncomfortable with his legs and feet.

He's still really sleepy but not at night, the nerve pain in his foot is still a concern, he has loads of blisters on his toes, top and bottom of foot, leg is leaking fluid. Having to change dressing about 3 times a day.

Tomorrow I am going to talk privately with the Dr about the blisters and how he thinks they are going to go, plus the pain in his toes.

Hopefully he will be back after his oncology appt on monday, I hope they restart his chemo if his bloods are ok, the cellulitis is getting no worse. He will start going to the hospice as a day patient.

Had a heart to heart with him and told him I cannot do the lifting as my abdomen just hasn't recovered enough from my hysterectomy. Also he cannot stay at home alone and must tell me if he needs to get up in the night as he isn't safe walking round even with his frame. We are moving furniture tomorrow before he comes home, and we also hope to get him a electrical recliner chair, I just cannot get his legs high enough on the sofa. Begrudgingly he has agreed.

Poor John (son in law) seems to be really suffering with his Dads condition, he is helping with the furniture move tomorrow. Can't explain it but hes just not himself.

Spending about 11 hours a day with him, don't want to miss a minute. Exhausted at the end of each day.

Off to bed.

Keep being brave everyone, sending everyone a virtual hug,

Jools

[Lulu]

Oh my darling Jools, my heart filled up for you when I read your post, I can almost feel your exhaustion. You are right not to do lifting, the last thing you need is to injure yourself just now. I hope they can help with Bill's blisters and cellulitis which would do so much to make him feel more comfortable.

I would take it as a good sign if the hospice say he wasn't as bad as they expected, each day is such an uphill struggle I know. We got a special 'cushion' for Dad to sit on as he is starting to have red marks like pressure sores. we got it from Macmillan nurses as well as a special mattress which makes lying down more comfortable for Dad. I think the pressure is being caused through him being so thin, losing muscle and fat so it's almost bone rubbing against skin causing the soreness.

I am thinking of you today and sending postive vibes through the air for some good news for you as you surely deserve it. Can I just say I am massively impressed by the way you are handling this which is so very different to my own mother, I wish she was more like you.

Huge cyber hugs,

Lulu xx

[DRAD3]

Hi Jools

So glad to hear that Bill has had some TLC in the hospice and good to hear that they weren't all doom and gloom - must have given you both a lift. I see that you are still making lots of practical arrangements to make sure Bill has all he needs and good that you seem to be constantly ahead of the game - it will ensure there are no nasty surprises for him which can only cause him stress and upset - he has enough on his plate, as have you. I have great admiration for you, Jools, and can only give you a massive hug and send you much needed strength.

lots of love

Deb

x

[susikus]

Keep going Jools, you're doing a wonderful job. Bill is very lucky to have you in his corner. Lots of love, Sue, xxx

[Jool2504]

Hi,

Sorry I have not been on all week but its been hectic since Bill came home on Monday evening. His PC doesn't seem to be bothering him too much with the increased Gabapentine which has been increased twice this week.

Bill is more alert again, after Tuesdays visit from the community nurse we now have night sitters 10 nights out of 14. Alas my night of looking after him he fell, thank God hes unhurt but has a lovely bruise on his hip, it could have been so much worse. Bills not that keen but he's getting used to it and I'm getting some sleep. I'm so tired looking after him in the day I don't know how I was doing it on a couple of hours sleep.

We have an ongoing battle to find the right dressings for his legs and foot, which is streaming with fluid, just seems to be getting worse and I am desparately trying to keep his foot dry, the blisters are multiplying and spreading towards his knee. The community nurse has just been and told him he must keep his legs up and it will help with the blisters. So for the last 2 hours he has had his legs up on the sofa. We have been told of a dressing thats like a boot, managed to talk todays nurse into prescribing him some. You would not believe I change his dressing between 4 to 6 times a day plus the nurse does it once a day and I used approx 11 separate dressings & 2 bandages on it everytime, we are having to put a childs mattress protector under his foot and wherever he puts it. Getting through 3 of them a day. I'm exhausted and have asked his neice for help.

Also after days of searching we've managed to buy a riser recliner chair on ebay for under £200, hoping to get it to us in next couple of days he really needs it.

Last night was the first night in weeks he has managed more than an hour at a time asleep.

Bill starts as a day patient on Thursday at the hospice. He has a CT scan on Tuesday to see whats happening, I think they will stop his chemo as his quality of life is being so effected, they said they had alternatives they could tell him they'd use if chemo was stopped, its the thing thats keeping him fighting, if they stop it and don't give him anything else I think he'll give up.

On a brighter note we went out yesterday with my parents, I think that keeping him awake most of the day is what helped in his nocturnal sleep.

I have been reading posts and some of the words have moved me, you my forum friends are amazing, I have trouble expressing what I want to say, sending words of comfort, keep strong everyone.

Jools

[DRAD3]

Hi Jools

How are you and Bill today? I so wish I could come and give you a hand too - you must be absolutely exhausted. So frustrating to read how much work you have and to only be able to offer some words of support. So glad you had a good day out - precious times eh? I do hope the scan goes OK and he is given some positive vibes to keep up his morale - I know what you mean about needing to know that there is still treatment on offer. Fingers crossed.

Take care, Jools and "speak" to you soon.

Deb

x

[Jool2504]

Hi everyone,

More hassle, it never stops with this PC and perifical vascular disease.

Bill was so drowsy yesterday managed to get him to CT scan, had to try & keep him awake to drink solution which he them vomited all over himself & my coat, so he sat there soaked & half asleep, I was frantic, he eventually had his scan & I got him home. District Nurse looked at his foot & rung GP, straight to A&E sat for 3 hours before Dr looked at him by which time his foot had improved. They think the injection for CT scan affected his circulation. Got home 4 hours after we'd left.

The riser recliner has arrived which he's now using after a few hours of persuasion.

The eclypse boot dressing is great soaking up all the fluid from his foot & leg, definately recommend to anyone with leaky legs & feet.

Day patient at hospice tomorrow hope they can sort the drowsiness out again.

Deb, thanks for your kind words.

Marie Curie night sitters are brilliant, I'm getting sleep & don't have to worry about Bill in the night

Take care all.

Jools

[DRAD3]

Thank the lord for the Marie Curie nurses - I don't know how you would be managing Jools without much needed sleep. Another full and exhausting day for you both but still you are managing to make improvements - you are amazing!

As ever, we are thinking of you - do hope the hospice day helps.

Keep us posted, Jools.

Much love

Deb

x

[cally]

Hi all

I hope you don't mind me butting in. I watched my beautiful son pass away from this evil PC. I noticed that Bill was having problems getting up in the night, I don't know if the situation is the same but for my son Gavin I got him a water bottle so he could just sit on the edge of the bed and thus no stress of getting up.

I wish you all well on your journeys

Catherine x

[Jool2504]

Morning,

Can't sleep yet Bill is snoring away gently on his new chair.

We went on the hospice day but since tuesday Bill has struggled to stay awake and today was no different, the nurses were shocked to see the dramatic change in him. When he was awake he didn't like it. Eventually we saw the Nurse looking after him in day care and then the doctor.

Not good news, the Dr checked his blood results from Tuesdays A&E visit, his Kidney & Liver functions are decreasing rapidly in the 2 weeks between blood tests, she also got into his scan results from Tuesday which were not good, his PC is increased. The gangrene in his toes, foot & now his leg is causing havoc with his already suffering renal system. Also a chest infection, fluid in his abdomen. She says he was weeks, and she did tell Bill.

Hes supposed to be going in as a inpatient today, but as he wants to finally come home they may just look after him at home and get his checks done here. His son and I would both like him to go into the hospice for a while at least to see if they can sort out the tiredness again, John & I both feel more secure with Bill being there, having 24/7 care from the experts, not at home having to pick up the phone and wait for someone to arrive and help him. All his pain / nerve meds have been reduced.

So after all that awful news its not surprising that I've not slept for long, so much going through my head. He does seem more alert when hes waking this morning, far better than yesterday.

Oh I don't know what to do.........what he wants or whats best for him.

He's awake so had best leave now.

Hope everyone else is ok?

Don't know when I'll get to post again.

Jools