A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

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Re: Stephen's Story

Postby Veema » Sun Mar 19, 2017 9:41 am

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


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Re: Stephen's Story

Postby sandraW » Sun Mar 19, 2017 10:14 am

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

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Re: Stephen's Story

Postby Sandiemac » Sat Mar 25, 2017 12:16 pm

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.


Re: Stephen's Story

Postby Marmalade » Sat Mar 25, 2017 2:13 pm

Fantastic! Brilliant news xx

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Re: Stephen's Story

Postby Elaine123 » Sun Mar 26, 2017 11:14 am

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

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Re: Stephen's Story

Postby Veebee » Sun Mar 26, 2017 2:36 pm

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

Vee xx

Proud Wife
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Re: Stephen's Story

Postby Proud Wife » Sun Mar 26, 2017 7:25 pm

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

Lots of love
PW xx

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Re: Stephen's Story

Postby Sandiemac » Sat Apr 01, 2017 1:46 pm

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.

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Re: Stephen's Story

Postby stepuha » Sat Apr 01, 2017 7:48 pm

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

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Re: Stephen's Story

Postby Dandygal76 » Sun Apr 02, 2017 8:27 am

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

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Re: Stephen's Story

Postby Sandiemac » Thu May 25, 2017 12:14 pm

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
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Re: Stephen's Story

Postby raun cesar » Mon May 29, 2017 7:17 am

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

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Re: Stephen's Story

Postby Sandiemac » Mon May 29, 2017 3:54 pm

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.


Re: Stephen's Story

Postby Marmalade » Mon May 29, 2017 6:21 pm

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

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Re: Stephen's Story

Postby Sandiemac » Wed Aug 23, 2017 12:33 pm

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.