Living with a Serious Illness

On 25th June I had to go to The Wishaw General Hospital for a medical examination on my arm. This was classed as a private appointment as it was arranged by the Insurance Company. My hubby and I arrived early for the appointment at 1:30 and checked in. After sitting for 20 minutes I asked the receptionist if the Surgeon had arrived yet as my appointment was for 1:30. I was advised that he had not yet arrived at the hospital but I would be called in when he arrived. At 2:00pm I was called through and he introduced himself and just about shook my sore arm off. No apology for him being late and then to add insult to injury he asked us if we could wait for 5 minutes while he had a word with one of the other surgeons. He arrived back again and proceeded to have another go at taking my sore arm off.

Things did not get off to a good start and they just went downhill from there. All the questions he was asking me I could not answer as I do not have a medical background. He asked me which bone my surgeon had removed and the size of it, again another answer I could not give him. He did not have my file or my X-rays so he was working totally in the dark. I explained that in April this was the 2nd operation on my arm and although the scar had healed there was still a lot of healing going on inside the arm. I told him that I had to be very careful with my arm and I had not yet started physio excersises yet as the arm was not ready. He then stated that he would have to examine my arm. I purposefully wore a sleeveless tee shirt so that he could see the arm with out me having to take any clothes off. He proceeded to manipulate my arm in such a way that I was practically screaming. I never knew it was possible for an arm to go in some of the directions he made mine go. After about 5 minutes into the examination there was a loud crack came from my arm and I nearly collapsed with the severity of the pain. My husband jumped up and told him that my Surgeon did not treat my arm as badly as that and he was not getting any further chances of looking at my arm incase he damaged it. He then said that as he did not have my X-rays or notes he could not write a report and would have to contact the Insurance Company for my notes etc. I was furious. He thanked me for coming and we were marched out his office.

My arm was in agony and when we got back to the car I took some of my Morphine to help me with the pain getting home. It turned out to be 114 mile round journey. Why they sent me to Wishaw I do not know. I would have thought Edinburgh would have been a lot nearer. When we got home at 5:00pm and I took my jacket off my arm and hand was swollen to twice its normal size. I had one terrible night. I could have stated exactly what type of night I had but my bad language would get me thrown off the net.

In the morning my arm was still as bad and my Husband phoned my Surgeon's secretary. She was on holiday so she said she would speak to Mr Patel her senior registrar and he would decide what to do. Later on that day she phoned me back and told me to relax the arm and if it was still as sore the next day to call her back. After another sleepless night I called back and was told that Mr Patel would see me on Friday morning at 10:10 and to take extra pain medication to help with the pain.

On the thursday morning I was due at physio and she took one look at my arm and said no excersises today and gave me a gentle massage to try and ease some of the pain. She could not understand how any surgeon could get a patients arm into such a state.

I saw Mr Patel on Friday morning and he sent me for an X-ray. It seems that this so called surgeon from Wishaw had wripped the scar tissue from the arm. This has set me back about 4-6 weeks. As you can imagine I was not a very happy person!!!!!!!!

My solicitor was told about what had happened and he has sent off letters of complaint. I hope this surgeon gets struck off from doing thses medicals because I would not like to see someone else go through what I've gone through this week. The swelling has gone down now but movement of the arm is still very sore.

I was doing so well after this operation and now I feel I'm back at the begining again. That will be the last medical I will ever go on. I don't care if he can't write a report, I will not step foot back in his office again.

Sorry I've been so long in catching up with my journal but Paul has been in and out of hospital as you know and now this on top of everything else is just too much. Till my next entry take care and God bless.

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Paul got home from hospital on Friday afternoon and I've spent this week end catching up on my rest. You do not realise how much energy it takes visiting someone on a daily basis at the hospital. Paul was in the new Royal Infirmary in Edinburgh at Little France and it is about an 80 mile round trip and the roads you have to use to get there are the worst for traffic jams and hold ups. It takes about an hour and a half to get there and usually about 2 to 3 hours to get home depending on how much traffic is on the Forth Road Bridge.

We had a long chat with his Consultant and basically it was all about transplants. If my Hubby did not have Hep C there would not be any problems and a transplant would be a very effective way of treating his condition but as he does have Hep C it causes lots of problems. All his results are not back yet but according to his blood work there is a chance that he could develope cancer on the liver and also go into liver failure. Like all illnesses you cannot predict when or how long it will take this to happen. So! the plan at the moment is to keep him under close observation and leave the transplant until the last possible moment. It was explained to us that if they were to go ahead with the transplant now the graft would be attacked straight away by the Hep C virus and it could destroy the new liver very quickly and he would be back in the same position he is in now. Also because he has the virus he is only allowed one transplant and if it does not take or anything goes wrong they will not be able to help him in any way. For someone without the virus they would give them another liver but they have found over the years that with Hep C patients if the first one does not take none of the others will take either. After hearing that I was dead against my Hubby having a transplant but if he develpoes cancer or liver failure they will have to try and see if a transplant will work for him. His life expextancy if it takes will only be about 5 years.

This news hit me hard and I just can't seem to take it all in. Surely there must be something they can do to help him. I do not want to lose my husband and the way they are talking no matter what action they take the outcome does not look so good. My hubby has been very quiet as he now realises just how serious his illness is. I've been praying that his bloods remain steady from now until we are both in our old age but I know life is not like that and you just have to take what is given to you. We were both of the impression that a transplant would solve all his problems and to find out different has hit us both hard. He said to me yesterday that he feels as if he has a ticking bomb inside him and in a way he has as his liver could fail at any time or cancer could develope.

I know there is always someone worse off than yourself but at this moment I would gladly lay down my life to save my husband having to go through this but then he would still not be happy as he would not have me. I'm trying so hard to stay possitive and not panick everytime I look at him and see just how ill he is looking. I'm frightened to talk about it to him incase it upsets him more than it already is. I'm feeling totaly lost and don't know what to do to make thigs better or easier. For the first time in my life I feel as if I've hit a brick wall. I really don't know what to do and for me that is unusual. I usually always have an answer or an idea.

We are both religeous and thankfully that is one comfort we have. I pray daily to have this taken away from him but I strongly believe that there is a reason for everything and this must be what my Hubby has to deal with. The rest of his results should be back by wednesday. He has an appointment for 4 weeks but if the results are not good they will call us at home and get him to come to the hospital sooner. Everytime the phone rings from wednesday we will wonder if it is the hospital or just friends and family calling.

We have had to break the news to our son and daughter and we found that very hard. Our daughter wants to come home as she is a nurse and thinks she could be a great help to us both. Our son also wants to come home too but we've told them to hang on just now until we get all the results and know exactly what the position is. It is easier for our son to get home as he is in New York but our daughter is in Australia and she feels she is too far away. We have left things as they are just now until his results come through then a decision can be made.

I dread to think how this is affecting them as they are both very close to their Dad and living abroad it is not easy to get home at a moments notice. Paul was looking so well at Christmas time that they both must be in shock to get this news about their Dad.

Well till my next entry take care and God bless. I'm sorry I seem to have moaned all through this update but I cannot find anything uplifting or happy to say except that my friends dog had 10 pups and they are all doing well. So I think I will end on that happy note.

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Paul got the results of his scan this morning and we were over the moon to hear that he does not have cancer. We noticed however that his Consultant was not looking too happy and when we asked him what was wrong he told us that according to his blood results his liver function has decreased drastically and he will need to get a transplant within the next 3 to 4 months. We both hit rock bottom then. Because Paul has Hep C his chance at a successful transplant is very low so this was the worst kind of news we could have got.

His Consultant is going to arrange another 3 scans at the Western Hospital plus an EEG test. Once he has all these results Paul will need to go into the transplant ward for a week to get all the usual tests done before they contact the transplant list. His Consultant thinks he may require an urgent transplant which will mean he will go near the top of the list.

We are both shell shocked and I'm sure my Hubby is terrified at the prospect of this operation but all we can do is take it one day at a time. I still carry a small beam of hope inside me that they will come up with something to improve the liver without doing the transplant but again we will just have to wait and see.

I have been inundated with phone calls from all our friends and family and at the moment I do not really feel like talking to them. I seem to be repeating the same story over and over again. I wish I could just post a bulliten on the internet but unfortunately not everyone has a computer or knows how to use them.

I would like to thank you all for your kind comments and prayers. They really helped me get through the week end and the long wait for his results. Now I will have to go through it all again untill all the information has been gathered and interpretated. I'll just keep my fingers crossed that they can come up with anything apart from a transplant to help my husband.

Till my next entry take care and God bless.

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For the past 4 weeks my husband has been very ill and having to spend a lot of time in his bed. We both thought it was just a bad stage in his illness and it would go away quickly but this has not happened. His Doctor contacted the Transplant Unit and he got an appointment to see his Consultant last Monday. Things did not go well. He has lost about 6 stone in weight and his Consultant was so concerned he arranged for him to be admitted to the hospital on thursday and to get a cat scan on Friday. His thinking is that he may have developed cancer on his liver. This has devastated us and after his scan on Friday he was sent home on a week end pass as his Consultant is in Birmingham until Monday with no idea how the scan went. So! he goes back in tomorrow and will get the results of the scan.

This week end has been horrendous. I've tried so hard to remain positive but the worry about the big C will not go away. My poor husband just lies in his bed and does not speak. He manages to get a few hours sleep but most of the time I think he is running eveything through his mind. If it is cancer he will go to the top of the transplant list and could get his operation within days rather than months and that is also a frightening prospect.

If on the other hand it is not cancer he will have to under go more tests to find out what is wrong as he cannot afford to lose any more weight. I've been trying to tell him that it could be due to stress as his one of his sisters died at the begining of May and he has had a lot of worry with his family as they all seem to be getting bad health, strokes and heart attacks. When my husband hears this he just shrugs his shoulders because I think he is convinced that he has got cancer. Once your mind goes down that road it is very difficult to change that thought.

The only concilation is it is not long till tomorrow and hopefully we will get good news and that it is not cancer. That then leaves the problem of what is the matter with him and why the massive weight loss? Please keep your fingers crossed for us that all will go well and if you do pray please say a prayer for my husband. He could do with all the help he can get.

Till my next entry take care and God bless. 

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At long last I have some use in my right arm and I'm able to update my journal. Everything went well on the day of my operation. I arrived at the hospital at 8:00am and was shown straight to my bed. I had a long wait to go down to theatre as my slot had been put back to 2:00pm due to an emergancy. I expected to be very worried but I was very calm and even managed to catch a few hours sleep, something that I never thought would have been possible. I felt as if someone else had taken over my body and they were keeping me calm and unworried. The operation took about 3 hours and I was back in the ward for 6:00pm.

I was very sore and the morphine pump they had me on did not seem to be doing any good. The nurses were great though and contacted the doctor and it was decided to give me my own medication for pain control. Once they started that my arm was a lot more comfortable. The surgeon had taken out all the wires, metal and pins and a large portion of bone.

The next morning my surgeon came round to see me and said that I could go home in the afternoon as long as I took things easy and she would arrange for the nurse at my Doctors surgery to change my dressings. I was over the moon because she had told me I would be in the ward till thursday or friday. I think they were short of beds so I was one of the lucky ones who were allowed to go home.

Ten days after my operation I went to the hospital to get my stitches and staples out. It was horrible because my would had not been cleaned since my operation and all the dried blood made it very hard to get them out but that is all over now and everyday when I'm in the shower I try to get all the dried blood off my wound and scar.

I start my physio on thursday and I'm not looking forward to it because my arm is much more sore than it was the last time. I don't know if that is because some bone has been taken away but movement is very sore. You don't realise how much you need your two arms and hands to do even the simplest of jobs. At the moment I can only wash my face with one hand as my right hand can't reach my face. I have to wash and dry my hair with one hand as well. Also I can't even carry a cup of tea with my right hand so it looks like I will have a long hard job before me. I even have problems eating my food as I can't cut things up with my right hand and as foe getting a spoon into my mouth with my right hand that is an impossibility. At least it gives my hubby and I something to laugh about.

My hubby is due at the transplant unit on 21st May as he has been very unwell for the past few weeks so I hope it is not going to be the case of me out of hospital and him in. That would realy cause problems because I have to rely on him for so many things as my arm just will not work the right way yet.

Anyway till my next entry take care and God bless. Enjoy all the lovely weather.  

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After weeks of feeling nervous, sick and worried I am now feeling very calm at the thought of going into hospital tomorrow for my operation. I’ve to fast from <?xml:namespace prefix = st1 ns = "urn:schemas-microsoft-com:office:smarttags" />midnight and present myself to the ward before 8:00am tomorrow. Originally I had an afternoon slot in theatre but my surgeon has decided to take me down in the morning and for me that will be less stressful as I will not be hanging around all morning and some of the afternoon waiting to go.<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" />

My Hubby was going to take me down to Monkey World in Dorset to help take my mind off things but when I went on the internet to get the address etc. I found out that the owner Jim Cronin had died on 17th March from liver cancer. We were both upset to hear this news as he is only 55 years old and has done so much all over the world to help these apes and monkeys and bring them here where they can live out the rest of their lives in happy groups and they are well and truly spoiled by all the staff. There is a program on one of the animal channels called Monkey Business which we watch and we have learned so much about these lovely primates. We have decided to put this visit on hold for a few months as it is too soon after his death to visit the park.

To occupy my time my Hubby and I have been taking my friends dogs Charlie and Baba for daily walks. They are rottweilers and have fantastic pedigrees and have won Crofts on several occasions. There is a lovely walk just outside the village which takes you up to a man made loch with ducks, swans etc. Charlie loves the water and would spend all day there if we would let him. Here are a couple of pictures of them. Baba is at the edge of the water as she finds it too cold just now but Charlie wades out and has a swim every day.

With walking the dogs daily I have discovered muscles I never knew I had but at least I'm getting the exercise I so badly need. My girlfriend who owns the dogs breeds rottweilers and pit bulls. I used to be terrified of big dogs but hers are so good natured that I feel quite happy in their company. My Hubby has fallen badly for Charlie and would love to keep him but our house is not really big enough for a dog that size. When he comes round to visit he shifts all my furnitute so he has plenty of room to crash out on the floor. I am almost certain that while I'm in hospital Charlie will be staying with my Hubby to keep him company. My girlfriend is quite ill at the moment and finding it hard to cope with all the dogs. She has 8 at the moment and one of the bitches is due pups in about 2 weeks. This is why we have been trying to help her out as much as we can. As well as helping her we benefit from all the walking. I feel all my energy coming back so something good has come of it.

I will be off line for a few weeks as I'm not sure how long I'll be in hospital. When ever I'm fit I will update my journal and let you know how things went. Till then take care and God bless.

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I have finally got a date from the hospital for my operation to my right arm. I'm to be admitted on 23rd April at 10:30 in the morning. I have to fast from 7:00am so I assume I will be going to theatre in the afternoon. The only thing that can stand in my way is a lack of beds so I hope you will all keep your fingers crossed that there will be a bed avaliable for me and the operation goes ahead. I have to phone the ward before I leave the house to find out about the bed situation.

Yesterday I was taking things easy as advised by the hospital when without any warning I collapsed and my hubby found me lying on the floor when he came home in the afternoon. I have no idea how long I was out but my right arm is in some mess. From the shoulder down to the elbow it is all black and blue and very badly swollen. My hubby called the Doctor and he was told to take me to the hospital. So! we spent most of the afternoon and all of the evening in the accident and emergancy department. I was taken straight away but I had to get x-rays and bloods taken. They then talked about admiting me to the ward but decided to leave it until after my operation then they are going to do some investigation into why I'm taking these blackouts or fainting spells. They think it has something to do with my heart as it speed up for no reason and they think this is causing me to faint. I've to be fitted with a 24 hour heart monitor next week and depending on the results from that they will do other tests.

My hubby blames me for the fainting spells as I don't tend to do as I'm told by the Doctors. How can any woman sit on there behind all day and ignore evrything that has to be done in the house. If I did not do the washing, shopping, ironing and cooking etc we would be in some state but according to my hubby I should just lie back all day and watch the telly. If I was to do that he would soon be moaning for something to eat or where are his clean clothes. Men just don't understand women. We have to battle on even although we are feeling unwell because household duties do not do themselves.

Today I'm going to be a good girl and take things easy. My arm is so sore and swollen that I can hardly do anything anyway and it looks like I will be calling for a chinese or indian meal tonight.

I hope you have all been having the lovely weather that we have been getting recently. The sunshine seems to bring out the best in everyone and all your problems and ill health don't seem to be so bad. I hope it lasts for the rest of the year and maybe everyone will feel a bit better about their lives and problems.

Till my next entry take care and God bless.

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I was called into hospital last month to get the wires removed from my arm in the hope that it would settle the pains I have and give me better movement. I arrived nice and early and after waiting for about an hour to see if a bed was avaliable I was called in to see the surgeon only to be told that my operation had been cancelled. He had been reviewing my x-rays and unfortunately my elbow and arm brake has not healed. I was given an appointment to see a specialist who deals with complicated fractures and I saw her 2 weeks ago. She hopes to call me intp hospital within the next 2 weeks for yet another operation. She is going to remove some of the bone which has died due to lack of oxygen and my recovery time is about 1 year.

I was really taken aback as I thought I was doing quite well getting the movement back into my arm. Now I'm going to be back to square one again and will have to start my physio again from the begining after this new operation. For the past 6 weeks I've been told to take things easy and I've had to stop any heavy housework like ironing, hoovering and shopping. At first I was delighted to get a break but after a few days I became very frustrated. I never thought I would be the type of person that would get annoyed at untidyness in the house and also I don't like the idea of someone doing my ironing for me. We never seem to be pleased.

My Mum has been doing very well on her new chemo tablets and has only one week of medication to go. I'm so glad she decided to go ahead with the treatment. Hopefully at the end of it she will be given the all clear and we will keep our fingers crossed that it does not rear its ugly head again.

I feel as if I've not been writing in my journal for years but I see it is only about 3 months. I may not have been writing but I've thought about all my friends out there in journal land. I've managed to read your journals but not been able to comment due to my arm. At the moment I'm typing with 1 finger on my left hand as my right arm is strapped up to avoid me using it. Still I hope it will not be long till the operation is done and I can start my recovery again for the second time.

Till my next entry take care and God bless. Enjoy all the lovely weather.

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I hope everyone had a lovely Christmas and New Year. Our son and daughter were home for Christmas this year and we had a lovely time. Usually it is just my hubby and I but this year we pushed out the boat and as well as our kids we also had a couple of our friends who are on their own to spend Christmas day with us.

My daughter and I set the table and about 2pm we all sat down to a lovely meal. It was nice that our friends were with us as I did not like the idea of them sitting down to a meal on their own. It made me relize how lucky we are as we have each other and two lovely kids, even if they do stay so far away. It must be terrible at that time of year to be on your own. We have made a new years resolution to invite any of our friends who are on their own to events like Xmas, New Year and Easter etc.

New Year was very quiet this year mostly due to the terrible weather. It was so bad that we did not even go next door to our neighbours. I think next year we might go away and spend a few days in an hotel. My Mum and Dad went up to Pitlochry and brought thr New Year in there. On ist January they had a street party which was on the local radio and they had loads of visitors from America, Canada, New Zealand etc. all looking to celebrate a tipical Scottish New Year. At one time we Scots used to have a great party at New Year but things have changed drastically over the years and as people have to work over the holidays there is not so much celebrating as in past years.

Health wise we are all doing well too. My Mum has restarted her chemo and she has 1 week in four on her tablets. This lot she seems to be able to tolerate quite well and she only has another 4 weeks to go. It may take 4 months but at least she is getting the treatment. I for one feel a lot better and feel more happy about her prospects. Cancer is a terrible disease and so hard to clear out of the system.

My brother and sister-in-law are doing well too so that is taking away a lot of strain from us. Maybe that is why my hubby is also feeling and looking a lot better.

Well till my next entry take care and Gos bless.

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I went to see my surgeon on Monday and he was very pleased with the progress I'm making with my arm. He thinks I'm now ready for some physio and I'm waiting for my appointment to come through. He has also told me that when I go back to see him in 3 months time he will arrange for me to come into hospital so he can remove the wire from my arm. The two screws have to stay but the wire has to be removed. His description of the proceedure does not sound very nice so I hope they will knock me right out as I don't think I can go through that being fully awake. It sounds awful.

I also got some answers to my heart condition and it seems that at some point I have had a minor heart attack and it has left me with some damage to the heart. It is because of this that they have put me on the heart tablets and it looks like I will be on them for life. They are supposed to stop me having another heart attack. I'm very confused because I thought that if I had a heart attack I would have knlwn all about it. My GP says that it is pssible to have a minor attack and not know anything about it. So! I must be one of the few people to have a heart condition and not know anything about it. I'll keep taking the pills though.

My Mum did not have very good results at the hospital on Wednesday. Her Doctor is stopping the chemo until January 6th next year than she has to make her decision about what she wants to do. It appears that the tumor behind her left eye can also effect her right eye and also her brain so that has given her a lot to think about.

She is looking exhausted and although she enjoyed her holiday she had to rest a lot as she was not able to do very much. Since she has been home she has had to have a lie down every afternoon as she runs out of energy. She is losing a lot of weight too. I feel so hopeless as there is nothing I can do for her except be there for her as and when she needs me. The way she is talking she thinks this will be her last Xmas and New Year and also her last holiday. I really think she has given up the fight. She is in so much pain daily and with having ostioathritis and her rib cage collapsing she has severe pains in her joints. She has also lost about 6 inches hight wise. I think all these years of suffering have finally caught up with her.

I'm hoping that after she has a rest for a month or so she will get back her fighting spirit. I don't know how I will face my life without my Mum. I have been so lucky to have both my parents for so long but that makes it harder to lose them. My hubby lost both his parents when he was in his teens so he has always looked on my Mum and Dad as his own parents so he is finding Mum's illness very hard.

He's also worried about me as my kidneys are slowly failing and he feels that everyone round about him are slowly getting iller and iller. I try and joke with him and say only the good die young and he will have me for a long time but he sees how much my health is going downhill on a daily basis. He has his own illness to worry about but he does not care about himself and only worries about me. I've tried everything to keep my ill health from him but he can read me like a book. When I tell him how pleased they are with me at the renal unit he just nods his head knowing it's a pack of lies but what can I do. He sees the pain on my face daily and I cannot even begin to hide that from him.

I just keep saying that next year will be better and if I believe that hard enough it may actually come true. He has taken his name off the transplant list as he feels he is not ready to face such a big operation so now I'm hoping that his condition will remain stable because if he goes downhill in any way I will insist that he goes back on the list. You can wait for months to get the right liver and I would hate to see anything happen to my hubby and not be able to get a liver for him when he desperately needs it. The transplant unit think he is stable enough to leave him off the list just now but he has to get fortnightly bloods taken and if they start to fall he will be put back on the list. He now wants to delay the operation as long as possible rather than getting it sooner. I think that is the right attitude for now as he has been so much better but the minute his health changes I think he will have to face the thought of a transplant.

I'm not really looking forward to Xmas this year and I'm finding it so difficult to build up any enthusiasm for it. So much so that my son has noticed and he is coming home for Xmas. My daughter is also coming home so it will be a family Xmas. I'm pleased that they are coming home but also a bit apprehensive as it is almost as if they know things are not great for us and want to spend as much time with us as possible. It sends a cold shiver down my spine. Can anyone send me some happy pills because I really need something to change this downer I'm on?

I'll just have to kick myself up the backside and get on with it. Stop worrying, be more possitive, and hope and pray that next year will be the turning point for us and for all the other families out there who have problems. They always seem worse at Xmas. So till my next entry take care, God bless and have a very Happy Christmas and may 2007 bring you lots of Peace and Joy.

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