Lost in a nightmare

[amanda45]

Latest update, Phil has now been diagnosed in the hospice with morphine saturation as he was becoming very sleepy and confused, his zomorph has been reduced to 70mg from 100 twice a day and this has improved the situation. He is now booked in for a ct scan next wed and is seeing the oncologist the day after so we will see what he has to say going forward. Phil is now hardly eating anything as he feels very sick when he eats and even a couple of tsp has him gipping and it takes all his concerntration to keep anything down. The hospice team have tried 3 different types of anti nausea meds but they are having no difference. Syringe drivers are being discussed as even swallowing the tablets is very problematic. His weight and strength continue to diminish and with his lack of mobility due to the radio therapy on his spine he is now virtually bed bound. He hates this and know that there is a possibility that the chemo that was suspended may now be stopped. He is starting to be very down and the only thing that he enjoys are ice lollies. I worry that he will not recover from this latest set back and sleep for me is now proving increasingly elusive. My friends tell me that I need to access counselling before I end up in a mental hospital but I haven't got time for this or have any idea how to access it. We continue to drag ourselves through each day waiting for medical professionals to make decisions that just make things worse and I dread what they have to say as time progresses.

Amanda

[Carole McGregor]

Oh Amanda, this is just awful. You and Phil have had so little decent quality time since his diagnosis. It's been one crisis after another. Hang on in there girl. You will find the strength from somewhere. Sending lots of virtual hugs.

Carole xxx

[jay]

sending you a massive hug Amanda,

love Jayne

x

[nikkis]

Dear Amanda,

So sorry to hear this. I would push for a syringe driver, as they can put pain killers and anti sickness medication in this, which will hopefully work much better than taking anything by mouth. Paul had had one since new year, and the district nurses come and change it every morning and can increase and decrease his dose according to his needs. Hopefully he will be off it soon, don't feel that if Phil has one it is a step backwards, it is just a way of getting things under control.

Have you asked at the hospice about counselling? I see someone at ours while Paul had alternative therapy. Not sure If it helps, but it is probably good to let it all out to someone who is not emotionally involved.

It is so very hard seeing someone you love suffer, and the not knowing what the future holds can be unbearable, I know too well how you feel. Make sure the professionals know how desperate you feel, so they give you all the support you need,

Take care,

Nikki

[sandraW]

Dear Amanda,

I can only echo what the others have said. I feel so sorry for both of you, you

are having a terrible time,sending you virtual ((hugs)) and hope as Nikki says you can access some counselling, I must admit that most of our healthcare professionals ask how I am coping immediately after asking Trevor how he is. take care sandrax

[J_T]

So sorry to hear of Phil's problems and the dietary side sounds much like Ray was. He ate nothing for the last 5 weeks and took only flavoured crushed ice cubes and that eventually ceased too.

I do hope that things can improve for you both. Take care.

Julia

[Cathy]

Hi Amanda

So sorry to hear about Phil's struggles (and yours).

Your palliative care nurse or GP ought to be able to get you counselling if it is something you think you might benefit from. You might need to join a waiting list so it would be good to get a referral at least.

Very best of luck

Cathy xx

[amanda45]

Many thanks for all the supportive words but it seems our journey with this awful disease maybe coming to an end. Phil attended the local hospital for a ct scan on Wednesday and we knew there was something wrong when afterwards we were asked to wait to speak to the radiology consultant before returning to the hospice. After a lot of hanging around and a lot of the staff whispering around corners the consultant appeared and informed us that he had a very large blood clot spreading across both lungs and they were completely baffled why he was not very breathless and distressed. The actual words they used were 'its tremendous that your still alive' This obviously was a terrible shock. Once back at the hospice the team there explained to us that this was a very dangerous situation and that is would also very likely be a chemo stopper. His fragmin was increased to 18,000 units and this morning we returned to the hospital to have an umbrella stent fitted around his vena cava to try and stop any more clots heading up to the lungs from the legs. We also saw the oncologist yesterday and he informed us that the chemo had not worked and that the pancreatic and liver turmour had progressed. This and the clot meant that no more chemo would be given and he has now been released into the full time care of the hospice. Although he is pleased that he will no longer have to attend the local hospital as he is terribly nervous every time he sets foot in the place he is in shock and we know that time is now short. His eating has started to improve ironically and the team think that this problem was very probably caused by the radiotherapy irritating the oesophagus. Friends and family have now all been informed and continue to visit. The funeral director and solicitor are coming to see him in the next couple of days to finalise the will and funeral arrangements as he is fretting about getting this done. The hospice have assured him that the bed is there for him and that they will do everything in their power to keep him comfortable. What an amazing place it is and all the staff who work there are very special people.

We know that time is short now and so what ever is left will be concerntrated in giving him what ever he wants with the health limitations he has. We have been able to access a counsellor who hopefully will be able to help him find so acceptance in this terrible situation. I know he is frightened of what is to come and he feels very cheated that at 48 this is it, this is tearing me and the rest of the family and friends to pieces to witness this but some how we will stay positive for him until the time comes. We now live on a knife edge wondering whether it will be the cancer load or the clot that will take him.

Amanda

[Bee]

Hi Amanda,

I haven't posted on your thread before but I have been following it. My heart goes out to you and I know exactly how hard this Is for you, Phil and your family.

I can offer no magic wand. But I am thinking of you, I lost my husband in December (age 43) after a very sudden deterioration and it is so hard to do what you are doing. Hospices are wonderful places and are there to support you all in this awful time. Cherish every moment , and say all the things you want to say, but most of all take it hour by hour.

Take care

Bee xx

[nikkis]

Dear Amanda,

I don't know what to say, I am so very sorry to hear your news, it is all so terribly unfair. Keep using that support you have built around you,

Love,

Nikkii

[Charney22]

Amanda I am so sorry to read your news, having lost Steve in February I know

The anguish you are feeling, my heart goes out to you

Xxxxxxx cheryl

[EmmaR]

Dear Amanda ,

My heart goes out to you both when you said Phil is frightened my hubby said to me in his last days I'am afraid and very frightened but at the end in a lovely hospice he became very calm and his fear drifted away just be there for him tell him to have no fear because your love and strength will see him though his journey .. It will be hard for you but stay strong .

Love Emma x

[Didge]

Amanda, I am sorry to hear the news but even now you can focus on the positive, that he is eating better, will not have the 'nervous' visits for treatment, and can still live each day as best, each day at a time. I know this is hard but the fact that the blood clots have not had much effect on him may give you some encouragement to live each day and take pleasure in each day you have. Your story resonated with me because my b/f is also 48, still having chemo, and it seems particular hard to have to deal with pc at such a young age. My husband died in his 30s from another cancer so I have been in this position before so am doubly thinking of you today and over the weekend. Lots of love Didge x

[Guest]

Amanda,

To hear your loved one say they are frightened and don't want to die, is heartbreaking. I really feel for you, I know how that feels. Hope you can keep posting here. You're not alone and we will all support you the best we can. Take care. xx

( Didge, sorry you have lost a previous loved one to cancer, I really don't know how you are managing, I can't imagine having to do this again )

[Cathy]

Hi Amanda

I don't think I can add to what the others have expressed so well. My partner died in a hospice and they were wonderful. For him this was the best place to be. It sounds like Phil is comfortable and must be feeling ok to be eating. I am sure you are cherishing each moment. If there is any comfort in thinking this, many are treading or have recently tread exactly the same path and are thinking of you

Lots of virtual hugs

Cathy xx

[jay]

thinking of you both Amanda

Jayne x

[belgrade]

Hi Amanda,

I lost my husband to this disease last september so know what you are going through. You wonder how you cope, but you do. Take each day as it comes and try to make the most of the good times as these will form special memories in the future.

Thinking of you both,

Hilary x

[J_T]

Dear amanda, so sorry things are deteriorating for Phil. It is such a difficult time and my thoughts are with you and your family.

Julia x

[Birchen]

Hello Amanda

I have not posted for some time but I to lost my husband to this dreadful illness on Christmas day. We as a family take great comfort from the fact that we were able to get Terry into our local hospice and we were with him all the time for the 5 days he was there. Terry told us he wasn't frightened of dying but just very sad at leaving us all. So many people on this forum have been through exactly the same thing but are constantly there for support if and when you need it. Thinking of you. Take care Lyn x

[Carole McGregor]

Amanda - I so hoped you wouldn't be in this position. So many of us have gone through the same nightmare recently with husbands who were all far too young to be leaving us so soon. Ironic isn't it that finally, Phil seems to be getting the care he deserves. All my love to you and your family. We'll be here for you when you are ready to post again.

Carole xxx

[mogs]

Dear Amanda,

My heart truly goes out to you. We are at the start of this horrific journey but I hope you find some inner strength to get you and your family through this difficult time. Sending love

Cara x

[sandraW]

Amanda just sending you cyber {{hugs}} take care sandrax

[amanda45]

Hi guys

I've very sad to report that we lost Phil on Wednesday morning 2nd April. He had a bad night and morning on the Monday/Tuesday, not being able to get comfortable in bed and coughing lot. By 3pm seemed much better and asked the hospice team to get him up into his wheelchair, he ate all his evening meal and seemed like the old Phil cracking jokes and taking the mick out of the nurses and his visitors. At 8pm he told me to go home and get some sleep as I had stayed the previous 2 nights and with the nurses moving him through out the night I had very little sleep. As he seemed much brighter I agreed and went home. The following morning at approx. 9am as I was organising to return I got a call from the hospice to say he had gone. I hurried up there in shock to find him in his bed looking as though he was just asleep. The nurse told me that he had had a good night and gave no indication that the end was near and when then woke him just before 9 for his morning meds he opened his eyes and smiled, the nurse then turned around to the medicines trolley to get his tablets and when she turned back he had died. As quickly as that. We at least can take some comfort that it seemed very quick and painless. The doctors later told me that is was probably the clot in his lungs. As the day carried on family n friends arrived, some went to see him and say goodbye some decided against it preferring to remember him as he was. The hospice team were as usual amazing keeping us stocked in a private family room just down the corridor with drinks and tissues etc. I am now wading through the organising process of his funeral and paperwork. At the moment I feel numb, I cried when I was with him on Wednesday but since I just feel sad and sick. We are in limbo waiting until the 14th for the funeral (the earliest date we could get). Everybody seems to tip toe around me constantly watching what I'm doing, sympathy cards are pouring through the door along with flowers but very few people actually knock or come in. I know that there is a massive wave of emotion inside me but I have build such a strong wall to stop it coming out over the last few months that if it breaks I think I will never recover. I don't want to upset the kids or Phils family that are all in bits so I continue to plod along with arrangements in the hope that I can get through the funeral and then maybe I will go away for a break by myself and see if I can start to unravel my emotions. Phil died 17 weeks from diagnosis but it seems more like 17 months as he went through so much. Thanks for listening over that time and all your support.

Amanda

[Slewis7313]

Dear Amanda, I am so sorry to hear Phil has succembed to this awful thing. It certainly has been a challenge for you both over the last 17 weeks, but good to know that the final stages were comfortable for him.

You will be in my thoughts over the coming days, please take care of yourself!

Steve

X

[J_T]

Amanda so, so sorry you have lost your lovely Phil. My very sincere condolences to you and all the family.

I can relate to some of your feelings/emotions but try not dissect the way you are reacting, just be.

Much love

Julia x