samsweechum's blog

The end of the story

2009-12-28T19:51:22Z

My gorgeous Sam died on the 10th December. He had just started another round of daily radiotherapy for 5 days and I think he couldn't face it. On the evening of his first treatment within half an hour of me ordering, as instructed, the last christmas present for his daughter he became confused and seemed to be suffering from the effects of too much medication even though it had not changed. I hoped he would sleep it off but in the morning Sam was the same. As he was due to have radiotherapy, and transport had been arranged, I phoned for the district nurses to come and see Sam. That's when all hell broke loose. They phoned our GP and hospice nurse as they were concerned about Sam. They also phoned the people who needed to come and move his bed downstairs and I had to ring the district nurses again when it had been done so that they could come back and get Sam comfortable in bed. Sam was quite agitated and had worked his way down his reclining chair so that he was nearly off the end of it. I couldn't move him back up and was so worried about him. The men arrived to move the bed and I asked them to help me move Sam, which at first they refused, as I expected, but when I burst into tears they moved him straight away. Sam went to sleep as soon as they had and just before that was the last time he was properly awake. I phoned the district nurses and they came very quickly to get him into bed. Then our GP arrived and the hospice nurse. Arrangements were made for a syringe driver to be put up as Sam couldn't take his tablets. I was advised to contact his family although the hope was that the radiotherapy had given quick relief and it was just the side effects of his painkillers. I phoned Sam's brother who was working away in France and he said he would get the next flight. Sam's sister and daughters were with us very quickly. Sam was very comfortable and quiet and Sam's eldest daughter sent me to bed at half eleven to try to get some sleep. I didn't sleep and came down at half twelve. Sam's sister and youngest daughter had gone home as Sam seemed to be settled. Sam's brother had phoned to ay he would arrive the following lunchtime. My daughter decided to go to Tesco to get us supplies to last us through the night. I held Sam's hand and told him I love him and that he could relax. Only his eldest daughter and I were now with him. Within ten mintes his breathing changed and as his daughter was phoning the district nurse Sam took his last breath. He was so peaceful and it seemed he had waited until the house was quiet and he was left with those who would be able to cope with what was going to happen. Sam had fought so hard and all his medical staff had said that he was only still with us through his determination, from a medical point of view he had been here at least a year more than expected. The past 18 days have been a blur and unreal. I can't believe he has gone and I keep expecting to hear his call. I can't go into the living room as there is such a large void. Sleeping is something that I know I must do but is elusive. After such a long time of constant rounds of tablets and helping Sam to be comfortable I am lost. His brother went back to France yesterday and this morning was the first day I had absolutely nothing to get up for. I should have tried to sleep but I can't. I miss Sam so much, I am only glad that he is no longer in pain and frustrated by the restrictions his illness put on his life. Sam is the kindest, most loving man I have ever known and I love him with all my heart.

Today has been hard

2009-11-10T23:41:41Z

Sam has a pain under his ribcage. He finds it hard to cough as the muscle goes into spasm and feels like it's drawing his back to his front. I called the GP on Friday as he wanted to see someone. She was with us within half an hour. Thankfully she was able to tell us that Sam does not have a chest infection, his lung sounds are clear and she can feel nothing that would make her worry. She also was pleased to see that, since her last visit several weeks ago, his fluid retention is no worse, it's not much better, but certainly no worse. So, to help open up Sam's airways and make it easier to cough, she prescribed ventolin, she suggested he increase his oxycontin to 135mg twice a day and take oxy norm while the increased oxycontin got into his system. Sam didn't want to go up to 135mg so we agreed on 110mg. By Monday he was no better, in fact a bit worse, and Sam said he wanted to go up to 135mg, which is so out of character for him, Sam has always wanted to reduce his medication if possible. I spoke to the GP again, as she had asked me to update her, and she wanted me to take Sam to hospital for a chest x-ray. I told her he has an appointment on Wednesday(tomorrow) with his consultant so she was happy that we wait and see him as it will save Sam alot of waiting around. Sam has been taking oxy norm much more than previously and today it seems to have caught up with him. He has slept for most of the day, only waking biefly and then he is very confused and has lost his co-ordination. I mixed up some co-codamol for him and, due to spasms in his arm, he promptly threw it over both of us. His kidney function doesn't seem to be too good as he is not passing very much and it is very dark. I am very worried about him and it is hard to deal with him talking in a way that I can't understand. I'm just hoping that the oxy norm will soon be out of his system and he will be back to being my Sam. It's so frustrating for both of us that I don't know what he is talking about. He keeps pushing all the buttons on his electric chair and ending up nearly stood up and half asleep. He gets so annoyed when I try to persuade him to put the chair down.

Sam has made it known to everyone that he wants to stay at home, I'm now doubting that I am capable of looking after him. It is becoming harder and harder. I watch peope on t.v and the people I see in the street who walk about without seemingly having a care in the world. It seems so unfair that Sam has been robbed of being able to do evertday things like walking to the shops or driving the car and I want to make him as comfortable as possible. I hope I am able to. Going to get comfy on the sofa again and try to get some sleep. We didn't go up to bed last night as Sam is more comfortable in his chair and it takes too much out of him getting upstairs.

Got some things done

2009-10-31T21:28:33Z

Today I got some more diy done. Finished the edging round the living room, still have to paper a wall, hopefully do that tomorrow. We're waiting for new sofas to come so want to have the room ready. I also put the strip down to join the floors from the hallway into the living room. What I thought was a five minute job turned into 2 and a half hours! Sam had put a temporary bit of wood down when he laid the floors 4 years ago and I thought i just had to take that up and put the proper thing in, but I had to lay another 5cm piece of flooring to make the gap right to do it and I just thought, while I'm there, I'll replace the bit he had laid in the doorway as it had got damaged. Got the saw out and cut it, piece of cake, but couldn't get it laid without taking some other bits up, then they wouldn't lay flat and it turned into a nightmare! This was supposed to be something I could do while Sam was sleeping. Sam woke up before I was finished and I was in a foul mood because nothing seems to go right when I try to do it. As usual, when I was explaining to him what i was trying to do, it finally dawned on me what I should have done to make it right. So, after a cup of tea at Sam's instruction, I finished the job in 15 minutes! Didn't get the holes drilled that I had marked up earlier to fix DVD units to the wall, Sam had told me which drill to get and by the time I had found it and come back he was fast asleep so I didn't want to wake him by drilling into a solid concrete wall. Hence my bright idea about doing the floor to make use of the time! Sam is pleased with what I've got done so I feel happier now. He's asleep again now. When he woke earlier I asked Sam if he wanted something to eat, by the time I had made it - just cheese on toast, he was asleep again!

Sam is sleeping much more now, he was convinced it's the amitriptyline that he takes in the evening to help the nerve pain down his arm, I had to explain to him several times that he misses the time for that medication quite often because he's asleep so it's hardly that making him sleep! The hospice nurse suggested we try Furosemide for the fluid retention. Sam has been on it for 5 days now but it doesn't seem to be making much difference. Sam is so uncomfortable because he feels bloated and full all the time, I hope it will start to work soon, although I have already been told that it's probably his glands that can't deal with the fluid and there's nothing that can be done for that. I wish I could make him more comfortable and life more enjoyable. My daughter is out tonight, and staying over, with Sam's daughters so we have the house to ourselves. It would be so nice to be able to make the most of it and do something special. I feel so sad knowing that Sam would love to be able to too but there's nothing he can do about it. I really don't know how he keeps a smile on his face and can still have a laugh. I admire him so much, he is so special, I am thankful that I am able to share this time with him and do all I can to help him. He has often said he would be in hospital if he wasn't with me and he couldn't have stuck that for long. I love Sam with all my heart.

Thank you everyone

2009-10-29T00:57:33Z

Thank you Julie, Carol and Terri for your comments. It is the first time I have written anything on this site and I wasn't actually expecting any comments, I just wanted to write something as i sat with Sam whilst he slept. Your comments helped me and made me cry, which is no bad thing as I know I bottle it all up.

Sam is sleeping again, he slept from half 4 til 10 tonight and now since midnight so I guess it will be in the very early hours that I get to bed after he has woken again and is able to get up the stairs. He is so determined to keep going up and down stairs although he is coming round to moving his bed down into the living room so I have been looking at camp beds that I can sleep on. There is no way I could go up to bed and leave him down here on his own. I have been reading other peoples posts and it seems so many of us go through the same thing, doing our best for the ones we love and trying to lead a "normal" life at the same time. I have been trying to catch up on some of jobs that need done in the house today but nothing is straightforward. I have to put some new skirting board on a wall, put the edging down and paper the wall. I found tonight that the wall is not flat so the skirting board won't sit right and I couldn't finish the job. Everything I try to do has complications. Or visitors arrive, or a nurse arrives and everything has to stop. I am convinced Sam is hanging on until everything is done so perhaps these obstacles are put in my way on purpose so I'm not complaining and I am reluctant to finish everything in case he will then feel ready to go. Sam is in so much pain and so unhappy with how he looks - bloated from fluid retention and unable to get about. I hate to see him suffering so much but know there is only one way it will stop and I can't bear to think about that. I try to content myself with the knowledge that Sam appears to be in control and he will decide when the time is right. But I don't want him hanging on for my sake. My emotions are all over the place and then I feel guilty for thinking about me. I just can't imagine how Sam feels. He doesn't talk about his feelings much, the only thing he has really said is he doesn't know what he's more scared of - living or dying. He is worried about how he will end up and what I will have to do for him. I've tried to reassure him that I am happy to do anything he asks or needs and I can only hope he believes me, I think he does. It must be so scary and daunting.

Both my Mum and Dad died of cancer and both in hospital. This was really hard on my Dad as he drove 60 miles each way every night after work for 13 weeks to be with my Mum. I don't know how he did it. My Mum looked so well right up to the end. Like Sam her cancer spread to her bones and that's what I find so difficult looking after him. He hasn't lost any weight and so looks okay yet i know from my Mum that not everyone does lose weight so there can be no indication that the end is near. The last time I saw her she looked better than she ever had but died the following night. My Dad was a completely different story, he seemed to disappear before my eyes and was so painfully thin and I was privileged to be with him until his last breath. Sam wants to stay at home and I am pleased about that. He hates being in hospital and would not be of any help to him. Sam has often asked me if his snoring keeps me awake, I've told him it doesn't, completely the opposite, I can't sleep when he's quiet. I dread the quiet nights as I will have them for far longer than the ones listening to him snore.

This has turned into another epic blog post! Sam is still asleep so I am sure I will up for a good while longer yet. I keep telling myself I should sleep when he does but i just can't. I want to enjoy him awake and asleep, when he's asleep it means he's comfortable and that's good.

My thoughts are with everyone who is going through this difficult situation and also with those who are trying to come to terms with the loss of their loved ones.

What can I do?

2009-10-27T00:41:24Z

I think it has finally hit me.

My gorgeous husband Sam was diagnosed with soft tissue sarcoma in 2006 after having a lump removed from his thigh that he had had for as long as he could remember. We first met in 2003 in Glasgow where we were on a course together. We both worked for the same organisation. I am a Welfare Officer and sitting in the bar on our first night he told me that his son had died due to cancer, aged 9, the previous September. My heart went out to him and we spent most of that evening talking. I admired his resilience and abitlity to carry on with an outwardly normal life. Following our return to Northern Ireland we kept in contact and he put alot of work my way, referring his members of staff to me who needed assistance. I spent hours in his office, just enjoying his company. We shared our problems, he was going through a difficult divorce, and i a difficult marriage. In December 2004 my husband left after having an affair. I am ashamed to say this is something I had wished for for many years, at last after 18 long years i was free from a suffocating and demoralising relationship. Sam was very supportive throughout this time and in January 2005 I invited myself round to his house, my daughter was staying with her Dad and I wanted to enjoy some free time. I intended to stay a couple of hours, I ended up leaving at 8 a.m after talking the whole night through. I had never been with someone who was so interested in what I had to say, or who was so interesting to listen to. And so began the most wonderful time of my life. I feel so at ease with Sam. This is how love should feel. We have complete confidence in each other, conversation is so easy, and so is silence. Sam is who I have been looking for all my life. He was proud to show me the lump in his leg that he could move around, it was his party trick. He had been for a biopsy but not received the results. After pressure from me he got an appointment with his orthopaedic consultant who couldn't find the results. She agreed to try to remove the lump as it was causing Sam pain and restricting his movement. She said that there was a risk he may not be able to walk after the op due to it being deep in his thigh muscle and if it looked too difficult to remove when she opened him up she would just sew him up again. She woke him in recovery, excited that she had removed the lump in one piece and she said that she had delivered smaller babies. She asked to use it for medical research. 8 weeks later we attended for a review, and discharge, appointment. We expected to hear that the wound had healed well, Sam was walking much easier, and as far as we were concerned the problem was solved and life could only get better. How wrong we were. The consultant could hardly get the words out. The lump she had been so proud of removing was a tumour. She had not removed it as a tumour and therefore Sam was to get radiotherapy to kill any cells she had left behind. And so our nightmare began. Radiotherapy followed by enormous blisters on Sam's leg which drew nurses from all around as no-one had seen them to that extent before. A review scan revealed secondary cancer on his lungs, chemotherapy followed. There were so many small lumps they couldn't operate. The chemotherapy stopped the rapid growth of the lumps. A later scan revealed spread to Sam's bones in his neck, more radiotherapy. Next was his lower back, then his left eye socket. The good news was this tumour caused his eye to bulge outwards instead of backwards into his brain. More radotherapy. we are at the stage now where pain management is the only option. Sam is still going up and down stairs, against medical advice. One false move and his spinal cord could be severely damaged, he is determined to keep his independence. When I spoke to his consultant in Feb he told me that he didn't expect to still be seeing Sam then, he cannot understand how he is still here. Still here he is. We married in on 29th Feb 2008. The happiest day of my life, and the saddest. Until the diagnosis I was looking forward to growing old with Sam. Something I had never envisaged in my first marriage. I knew Sam and I would always be together, it was just so easy. I saw us sitting by the sea eating chips, cooking together, going places together, just enjoying each others company. Sam has every confidence in me, since i moved into his house I have taken down a solid concrete wall between the dining room and kitchen, built a new kitchen and various other diy jobs, all because Sam says I can. It has all been under his expert direction.

We are now at the stage where he has to decide whether to stay upstairs or downstairs. The stairs are becoming more and more painful for him. He will not go into hospital. He has been admitted a couple of times and not eaten or slept. Home is where he wants to be and everyone is supportive of that. Downstairs has it's problems, so does upstairs. Where-ever it is I will be.

I miss him so much. All that we had and all that we planned. We have photo's around the house of when he was fit and able to do all he wanted to do. I feel so sad when i look at them. I cannot imagine the frustration Sam must feel of spending day after day in his reclining chair when he was so active. I miss the closeness we had. Of going shopping together, Of getting in the car and just driving. His life is now a neverending round of tablets, alarms set on my phone for the next lot of medication. Sam refuses to give up, for that I am grateful, but I am also so sorry that this is how his life is. Sam has been through so much, losing his son, a painful divorce and now finally being settled in his life and free to do all he wishes but physically he can't. Sam spends most of day sleeping and then annoyed with himself for sleeping the day away.

If only I hadn't pushed him to get the lump removed from his leg maybe he wouldn't have got the secondaries in his lungs and bones. But then maybe it would have spread anyway and we wouldn't have known until too late.

We must enjoy our time together, no matter how short. By all accounts it has already been much longer than expected, thankfully no-one has a crystal ball.