Stephen's Story

[Veema]

Hi Sandie

Sorry to hear things aren't great at the moment...I do hope Stephen's sepsis is brought under control and the stent op can go ahead next week. Hopefully then he'll pick up.

Keep plodding on lovely...there's not a lot else you can do, but we all know how difficult it is. You've done brilliantly so far.

Loads of love and hugs

Vx

[sandraW]

Hi Sandy,

I hope Stephen is starting to feel a little better and that he is eating a little more.

Its all very scary, you are lucky your hospital journey is short, and you can spend lots of time with him.

Just try to look after yourself too, even though its not easy I know, its so very draining and you feel so impotent.

I just wanted to let you know I an thinking of you both and sending positive vibes, take care love sandrax xx

[Sandiemac]

Hurray - the new stent is in. In fact the doc who did it came in specially. His professional pride must have been pricked when he failed last week. They are removing the drain today, monitoring him tomorrow and on Monday he can come home.

No.1 son is back for another visit, tying in with visiting his dad and Mothers' Day, so I will have both my boys here. Then we can start to get him mobile and feed him up.

Thank you all for your encouraging posts. I don't know what I would do without you all.

[Guest]

Fantastic! Brilliant news xx

[Elaine123]

Brilliant news he will be so looking forward to going home and you will be too. Hospitals tend to take over your life and your days and dont leave time for you. He should start to feel much better in quite a short time.Enjoy having your sons visit before throwing yourself back into the swing of things on Monday. Thats another crises over we tend to just go from one to the next one. Have a lovely Mothers Day . Hugs

Elaine

X

[Veebee]

That's really good news Sandiemac. ...All best wishes for the homecoming.

Vee xx

[Proud Wife]

Fabulous news! With the new stent in, hopefully you will have Stephen mobile and fed fat in no time!

Lots of love

PW xx

[Sandiemac]

You won't believe this, but he's back in hospital. He was literally minutes away from being wheeled down to the car on Monday when he fell in the bathroom and, we subsequently found, broke his hip. He was operated on yesterday.

Unfortunately we didn't know it was broken until a physio came in on Thursday and immediately picked up there was something wrong. The doctor on the ward and the ambulance men I called in desperation on Monday afternoon all thought it was just bruising. There will now be an investigation as to how he came to be discharged with a fracture. My poor lad has suffered days in pain. He is such a stoic.

[stepuha]

Dear Sandie, Stephen really is a stoic. Both of you have been through so much. I can't believe the doctor didn't investigate to see if there was a fracture. It is awful that he had to suffer as a result. I just read your thread from the beginning. Today is exactly one year since Stephen's first meeting with an oncologist and even more since he was first hospitalized. What a year it has been! I hope Stephen recovers soon and you get to hear good news again.

Big hug

stepuha

[Dandygal76]

Oh Sandie.. that is just awful that has happened on top of everything else. I hope he is not stuck in hospital for too long but at least they will be able to manage the pain now and the stent has been sorted. Stay strong lovely lady. x

[Sandiemac]

So, I thought I would give you an update. The stay in hospital for the hip replacement op turned out to be a long one due to his initial lack of mobility (of course that had been caused by the preceding 3 weeks in hospital for the stent replacement) and then blood readings they weren't happy with. He got very despondent again, especially over the Easter weekend when absolutely nothing happened for 4 days. He was discharged on 18th April. We had an existing appointment (a 3 month review) on May 2nd. A blood test taken a few days previously showed raised CA19-9 (now "over 2,000" when the previous one had been at 2,000. So another CT scan last Friday to see what was going on.

Dr M rang this morning to say there were no visible signs of any progression and he was "stable". We had already discussed further treatment on May 2nd and decided against it as Stephen is too frail and anyway the side effects just knocked him out so we are just carrying on carrying on. As Dr M said, we know the clock is ticking but we don't have to keep seeing what the time is so no further plans for scans or appointments unless something crops up.

In the meantime Steve has started going to the local hospice to a wellness clinic every Wednesday where he can talk to nurses, do activities, have a nice lunch, and give me a break. This is for 12 weeks. when that is finished we are thinking of going to a Macmillan affiliated hotel in Bournemouth for a holiday. Not prepared to risk "abroad" because he is still using a zimmer frame and is none too steady on his feet still. The last thing we need is another fall.

I have been visiting the site regularly even though I haven't been posting and send love and hugs to everyone.

Sandie xx

[raun cesar]

Hi Sandie, Sorry to hear the terrible things you had to witness. Here we all understand dealing with such is never been easy. Go with your heart but don’t get stressed. I wish Stephen all the best for stem operation.

Much love

[Sandiemac]

Hi Raun

I think you meant to post this on another thread. None of it is relevant to Stephen but thank

you for your good wishes.

[Guest]

Hi Sandie,

It's good of you to post, those of us who have continued to follow the thread are always hanging around in the ether just in case we are needed or to share news but I know that posting is sometimes a release for our concerns so wanted to post a reply so that you know we are here walking beside you.

I think your consultant sounds like a good chap and I think his words re watching the clock are exactly what we all need to hear and very wise. Nothing matters except you and Stephen having the best time you can for as long as you can, as my daughter used to say "sod the washing up". I also think the hospice sessions are a real help to patients and carers and I am only sorry that more people don't take advantage of them.

I didn't know about the hotel you mention, it sounds like a great idea. A bit of sea air is a great fillip and endlessly fascinating to watch the sea. Not too far from us and went there with a friend recently. We sat in the sunshine at a cafe on the end of the pier and just watched the water and the people, so relaxing. I hope you do go and that you have a great time.

Much love M xxxx

[Sandiemac]

Hi everyone

Yet another update, although not much to report. Stephen is still attending the Wellness Centre most weeks, but not today. He is experiencing more pain now and the hospice suggested giving him pain relief every 2 hours rather than a double dose of paracetamol and Oramorph every 4 hours. However, the schedule rather goes to pot because he is spending so much time in bed. Using hot water bottles very frequently at night now.

He is not eating very well and I have promised I will stop nagging about food (easier said than done!) so I just enjoy the times when he does just about clear his (small) plate. He has always liked 'moist' meals (and, being from Yorkshire myself, I like a bit of food with my gravy) but it has got to the stage where we mostly eat things like pasta and sauces. The hospice arranged for a prescription for an artificial saliva spray for his dry mouth but he has only tried it once so far.

I had to ring the hospice this morning as there was no way he would make it there today after the night we have had. The itching is bad (a hospice doc. said he had 2 patches of eczema on his back) and is all over the place. I think we have tried every cream under the sun. I have changed washing powder to a non-bio and he uses a soap substitute in the shower. Despite all this he never moans or complains. I so admire him. He is always telling me how much he loves and appreciates me.

I think it is all starting to get to me now as I have developed eczema on my chest and neck and look a sight. I expect it is stress related, although there is a history of it in my family.

We are booked into the Bournemouth hotel for a week from 2nd Sept. but I am now starting to wonder if we will make it as I wonder what the point would be for him as he spends so much time in bed. It might as well be in his own bed. We'll see. Another plus of this hotel is that they don't take deposits or mind last minute cancellations as they recognise that's the nature of the beast.

This seems to have turned into a rather depressing post, but he's still here and that's the main thing.

I keep abreast of things on the forum and send everyone love and hugs.

Sandie

[PCUK Nurse Dianne]

Hi Sandie,

Sorry to hear that Stephen is not so well today, and I have sent you a brief email with some thoughts. I also forgot to add some information that may be helpful for others in a similar situation with issues of a dry mouth. There are some really basic ideas that may help stimulate saliva, this includes some of the refreshing citrus juices ie lemon, pineapple and also ginger. As these are often quite 'tart' in flavour they may help to stimulate the salivary glands and will produce some saliva so the mouth is not so dry.

Another suggestion is to try some chewing gum if Stephen would tolerate this. It does not need to be chewed for long periods, having this before meals may produce enough saliva that his mouth is not so dry before eating and allow the meals to be tolerated better.

Boiled sweets (if you are able to obtain them) are also quite good at making saliva and offer a change in taste too.

I hope this is helpful Sandie along with some other thoughts by email, and please be in touch as you may need.

Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK

Support line: 0808 801 0707

email: nurse@pancreaticcancer.org.uk

[Justamo]

Hello Sandie,

Throughout all of this illness, Peter's worst nightmare was the itching from jaundice. He almost went crazy, and like you I tried every cream under the sun.

However, I did find one thing that helped. It is called MAGICOOL FOR ITCHY SKIN, and I bought the first one from Boots. After that I got it on Amazon, because I was buying three at a time. It really helped, much to the GP's amazement. I believe that some area Health Boards will allow it on prescription, but even if you have to pay for it it might be worth trying one can to see if it will provide relief.

The roller-coaster nature of this disease might mean that you can go to Bournemouth for a short break - don't cancel it just yet.

So sorry for Stephen - and for you. Take care.

Love, Mo

[sandraW]

Hi Sandie,

Sorry to hear Stephen is struggling at the moment. I had eczema quite badly as a child, it runs in our family too, I was given cold tar paste, I don't think its available any more but I still remember how soothing it was when my Mum applied it for me. Have you tried Sudocrem, I find it helps with my varicose eczema on my legs, it can be very drying for the skin though but anything is worth a try.

I hope you do get away, if Stephen is well enough of course, a change of scene is always good,

and it will be a much needed break, but I agree its no good if he is not up to it, the hotel sounds

very nice with its policy, it good to hear some places can be understanding.

I hope he stays as well as he can and I hope your eczema clears up too take care love sandrax xx

[Marmalade]

Hi Sandie,

How well we know the struggle to hold back from cajoling them to eat but there comes a time when it causes more pain and distress than it cures, you get fed up nagging and they get fed up trying to do what they can't do. I'm sorry things are catching up with you at the moment and that Stephen has the terrible itching, a friend has had some relief with old fashioned Coal Tar soap which is on sale in our local independent pharmacy but results with any of the lotions and potions seem to be very individual.

It is inevitable that you will have ups and downs in your mood and ability to cope. Having the sword over your heads from the day of diagnosis is a form of torture and you are bound to have days of fear and exhaustion. Try not to be hard on yourselves attempting to keep up 'normal life' This is a very special time and all that matters is that you have the best most comfortable time that you can. Fill the freezer with ready meals for days when you don't feel like cooking and let the non essential housework go, it really doesn't matter. I would not attempt the trip if it is going to exhaust you or Stephen, sometimes having familiar things around and people on hand to support you is reassuring but you will be in the best position to judge.

Much love Sandie, I hope you have a comfortable and enjoyable weekend

Marmalade xx

[Sandiemac]

Thank you for your responses. We will be going to Bournemouth, barring something catastrophic in the next week. When I mentioned cancelling Steve said we were going and that's that, because I needed the break probably more than he does.

Use of painkillers has diminished in the last few days. The 2-hourly schedule has gone to pot

but I make sure he at least has something before bed at night. However, he usually needs a hot water bottle at least once during the night, and some cream on his back. We have some Magicool (I bought it when the PC nurse recommended it to me in a phonecall, probably after hearing about it from you Mo), but the effect doesn't seem to last long. I am currently using a steroid cream on the worst eczema patches and he doesn't now seem to scratch much during the day. Thankful for small mercies! I'll try Coal Tar, Marmalade.

Again, the cricket is proving a godsend (as it did at this time last year) in keeping him occupied and our son is here this weekend (also a cricket fan) but apart from that each day is much the same. He is rather tottery on his feet around the house so going out for a walk is definitely not on the cards, even with his rollator, as the wheels go everywhere on anything but very flat ground. He's never been one for "aimless walking" anyway!

This has now been going on for so long (since Feb. 2016) that it's easy to forget what life was like before. This is now the normal. But hey, it could be a damn sight worse.

When my sons ask "and how are YOU?" (I'm sure you all get that) I say thank goodness for books, chocolate and wine.

[patrigib]

I know how difficult it is. Don't know what to say. So difficult for them, but for caregivers too ( husband diagnosed Sept. 2014!!!) What's "normal" life? Wondering too........ Hugs

[Didge]

Patrigib, how was the scan? Your husband has done amazingly well but it is certainly tough on the carers x

[patrigib]

Well, his scan and MRI in July showed " paradoxal" results, some mets stable, even decreased, one increased, tumour on pancreas stable but he is increasingly tired. Some days are ok, some days not (either high fever, or extreme pain, he fell also several times). Still manages to have a card play with his friends, on to mow the lawn on his mower. But I'd say quality of life is not so good, as he needs more and more rest. His CA 19.9 is also on the rise, about 1,300. It was 88 when he was diagnosed. His last blood work is also quite good. Bit of trouble on the liver and low haemoglobin (around 10) but his doctor is pleased.

I'm a teacher, and supposed to go back to work on the 1st September but I feel so exhausted and worried. Will discuss to have a leave, don't feel strong enough to cope anymore.

If it's hard for the caregivers, I can't imagine how hard it is for them..............

[Dandygal76]

Hey Sandie / Patrigib - these will be exhausting times. I also forgot what normal was and watching dad wobbling in his walk was the most difficult thing when he was always such a fit and athletic man. I don't think there is anything wrong with calling time out from work, housework, cooking and I think we can put too stress on ourselves trying to maintain normal. In the end with our caring my kids actually got sick of take out and having a Macs especially. Yes it is possible to prevent a teenager wanting take out! But, once you let a lot of it go it really does take some pressure off. I look back now and although things were not 'normal' we also had some very special and happy times regardless. x

[Sandiemac]

"Barring something catastrophic" I said, well how about a broken arm. No, we are not off to Bournemouth in the morning.

Stephen fell at home yesterday evening and broke his humerus. Good news is it doesn't need plastering, it heals on its own like a collar bone. Bad news is it was his left shoulder and of course he is left-handed. He has been moved from A&E to a "pending" ward whilst RAIT sort

out his mobility issues at home. We are thinking of a bed downstairs as of course he hauls himself upstairs using both hands. He is very tottery as of course he hasn't been eating and I am afraid it would just not be safe if it were just me at home without help. He has had several falls over the past few months but fortunately without damage. Further good news (you can see what a cockeyed optimist I am) is that today's blood test was an improvement on a recent one, much to the A&E doc's surprise, given he now has more stomach pain and his general appearance.

You couldn't make it up.