One hell of a day.

[kwaitang]

Well it's 2am. One hell of a day. Had to send for an ambulance for Keith as he was in so much pain. Paramedic arrived first and gave him all sorts of things including morphine. Ambulance arrived and took in to hospital where they are keeping him to monitor him. Heard from the hospital that does Nanoknife but they said that the cancer is far too extensive for them to treat. I haven't told Keith. Sent off to Heidelberg and will wait to hear from them. Also will write to the cambrdge institute at addinbrooks as they are hoping to start new clinical trials in the next 6 months. I know I am wasting my time but it may give hope to Keith. Only thing is how do I tell him if they all turn him down. He has been taken off of the trial medication he was on as he had so many problems cropping up but still having the same problems so it must be the chemtherapy. Sorry to be so miserable but I just had to write something. Ran out of anti depressants 3 days ago, must get some more tomorrow. Arlene.

[Didge]

Just a quick reply to say I am thinking of you. xxx

[J_T]

Hi Arlene so sorry to hear you are both struggling. Keith has had to endure such a lot of pain and I do hope they can do something about very soon. We were fortunate that pain was never a big problem for Ray, our Mac nurse was superb.

You must be devastated too that Nanoknife is not an option but it's good to see you are still exploring other options, it's all you can do, keep trying. I must say though that when Ray was finally confronted with the fact that all options had been exhausted it was kind of a relief because it took away the pressure of trying to get well enough for chemo if that makes any sense, probably haven't explained very well!

Sending you both my very best wishes.

Julia x

Edited January 20, 2014 by J_T

[nikkis]

Hi Arlene,

So sorry to hear to Keith has had this set back. Before Christmas Paul's oncologist finally admitted that Paul that he could not cure him. I had suspected this was the case, and pushed him to be honest with Paul. It has been hard since, as Paul had been so positive but he says he is glad that he has a true picture. Hope is a good thing though and we all need some to get through this.

Nikki

[MSH]

Very sorry to hear of Keith's problems. I can only sympathise with your dilemma, so very difficult. My view is that you shouldn't say anything unless Keith asks. Hope is very important but there comes a time when it is more important to make your peace with the world so to speak. It sounds as if the focus should now be on symptom control, and fortunately palliative care services are usually excellent.

Mark

[EmmaR]

Arlene ,

I agree with everything that has been said in the messages posted to you especially what J_T and nikkis said Please remember you are not alone and take good care of yourself and we all feel better for writing our feelings down on this forum because we have all been where you are or will be sometime with this Awful disease and know every member understands and will share your hopes and fears .

EmmaR x

[Cathy]

Hi Arlene

You poor thing, and poor Keith.

I also sent off a scan for Nanoknife. I always felt that Jonathan WOULD be too advanced but wouldn't have rested without at least trying. It was no surprise then to get the (astonishingly brief 2 line) reply to say so. Jonathan never asked the outcome although he knew that I'd sent off the scan and I never told him what the reply was. Even tho he had faced up to his illness and outcome from day one there didn't seem any point. If he'd really wanted to have known he'd have asked.. I think he probably knew himself. So that is what I would advise as well.

I feel for you my friend, having just recently tread this path myself.

Cathy xx

[kwaitang]

I will come back to everyone later. Just heard that it was a heart attack. 3 months ago the pain started, though not with as much severity. He saw a heart specialist 2 months ago and he wanted a scan. 2 months we have waited for the scan and Keith was due to have it on Wednesday. Just seeting off to go see him now. Arlene.

[nikkis]

What a bugger Arlene (for want of a stronger world). Thinking of you both,

Love,

Nikki

[kwaitang]

Thank you so much folks, for all the replies. It is nice to know that people take the time to read and answer.

Went to see Keith and the difference is amazing. He seems to be pain free and has eaten.

He is on a drip of Herapin? among other things and this is going through him all the time, they say for several days. One odd thing happened. The doctor at Barnsley thought that Keith might be better transfered to [Hospital name removed - moderator] to have a stent put in. He phoned them and came back in to Keith and asked him what his life expectancy was. Then back to the phone to the other hospital. He came back and said that the other hospital wouldn't take Keith as the risk of bleeding was too great. Now I can understand that but what had Keiths life expectancy have to do with it?

Keith has had over 3 months of terrible chest pain on and off to the extent that he couldn't walk at times, had to sit up all night. Our own GP suspected heart problems and referred him to a heart specialist who we saw several weeks later. He wanted a scan and we waitd 7 weeks for this - it was due in 2 days. Meanwhile he had been admitted to [Hospital name removed - moderator] twice. Had a blood transfusion and tablets to get rid of excess water as his legs were so swollen (he lost 4lbs in a day) but they said his heart seemed ok. IF the scan had been done earlier perhaps it could have prevented all of this and Keith may have had some quality of life. IF IF IF. Anyway he has had the scan now. I have now got my supply of anti-depressants so with a bit of luck I may be bouncing off the walls soon. Bless you all. Arlene.xx

[Cathy]

Hi Arlene

Great Keith is feeling better. This is fantastic news!

Heparin is a blood thinning med. Jonathan had this in hospital after his blood clots. His clots may, or may not, have been related to an, unrelated to PC, irregular heart beat.

Glad things have started to happen for you both. Easy on the bouncing of walls tho..

Hugs to you both

Cathy xxx

[InfoForMum]

Bloody IFs. Stupid people. So sorry Arlene. I really hope the improvement keeps up and you have him feeling more himself.

Take care

Sarah

XXX

[cestrian]

Dear Arlene

Good to hear that Keith is now more comfortable but it isn't right that treatment should be so hit and miss. Pleased you've also got your own meds back in line as it's so important for you both that you stay well and on an even keel.

I was left under no illusions as to my prognosis right from the start and came to terms with that quite quickly. The fact that I'm still here and feeling pretty well is a bonus to the point where I'm checking out nano-knife despite mets in lung and liver. If I get a "No" vote then I'll just keep on with local treatment for as long as it seems to be beneficial.

Good luck to you both

Love and Peace

Mike

[kwaitang]

A nurse from the hospital has just phoned to say that they are so pleased with Keiths progress that they may take him off the medication by tomorrow. She was so lovely and says that she will help in any way she can. She says that Keith's biggest worry is me. I will have to try and control myself a bit more when he comes home. She has been down from the dept that deals with cancer patients, even though he does not have his chemo at this hospital, to see him in the cardiac ward 3 times to check up on him and was the nurse that saw him for the first time he went to Barnsley back in May before all this cancer thing reared its ugly head. She is also asking Macmillan to take care of us and arranging for a district nurse to come out and check on Keith on a regular basis. Finally it seems that someone has taken us under their wing. I am so grateful. Oh lordy - my eyes are leaking again. She has spoken to his oncologist at {Hospital name removed - moderator} to keep them informed and they will decide whether Keith should stop the chemo altogether even though the cancer had not grown anymore since the previous scan, it is obviously damaging his heart. If that is the case it is his only treatment gone but perhaps he will have a better quality of life for a while. For 3 months he has been almost, I would think about 75% housebound because of the unknown heart problem. Going off to see him soon.

Mike, don't forget to try The Cambridge Institute's trials that are due to start in about 6 months. I have already written to volunteer Keith ( yes I have told him, lol ) Hope you have some luck with the nanoknife - it sounds good, wish Keith had been suitable.

Bless you all. xx Arlene.