My father passed away 5 weeks after his condition became terminal, or should I say from when we found out his condition was terminal. There was a large gap between this and his previous appointment. He was starting to feel weaker around Christmas time, and I know I was telling him to make an appointment with his consultant, but he kept saying that he had one in a few weeks time, Ill wait till then. I could see his condition was really starting to get him down, like I hadn't seen before. I know he was in pain, but at this point he wasn't able to hide it as much as he had used to do.
They were unable to give him any further blood, as it was putting too much pressure on his kidneys. His creatine levels shot through the roof and he was diagnosed with acute kidney failure stage 5, 3 weeks after his terminal diagnosis.
He at this point decided to stop working 3 weeks before he passed away. Even though he knew a week before we did, it was the moment when the doctor told us that I guess it became all the more real to him and perhaps knew then that the fight was over. I think he needed that week to accept the news himself,and when the consultant told us, he thanked her for everything she had done, and we kind of went into shock.
He became extremely weaker by the day, things started taking him longer to do. It even surprised him as to how quickly he began to deteoriate but it was only in his last week where he stayed in bed coming down the stairs only once a day to meet the many friends who came to see him. He did however go to the bathroom un aided, he struggled ALLOT but he was determined to do it himself and did even on his last day, despite the breathlessness and extreme dizziness caused due to to the lack of oxygen being circulated.
His last week I was actually staying with him as my mother was away on a pilgrimage, the doctors had advised that he was unable to go as the medical et up in the middle east would not be able to accommodate him as well as they would here. We enjoyed each day together, his appetite decreased but I just gave him whatever he asked for. It was usually fruit or a drink with lots of crushed ice, i would add glucose to him for energy. Each day as he got weaker he couldn't actually believe it himself, it took him a a whole day to shave but as always he was determined to do it himself.
He was taking fentanyl for pain and an oral dose of pain killers and thats about it. On the day that he passed away he went to the bathroom by himself at 4 am- he was always breathless after this trip but this time he couldnt catch his breath, my mum called me as she was back now at 8 am. i was there at 8.10, he was really breathless so i assumed he would need oxygen i called everywhere! on a sunday i couldnt not get hold of anyone, dad was adamant he didnt want to go to the hospital he was still talking it took him a while to get the words out but he did. At 11 am he said OK, and he said " they will give me some oxygen and ill feel better, but they might give me an injection too" I know what he was saying. He was preparing us. The ambulance arrived in 2 mins, within an hour we were told his toxicity in his body was around 6.5 and that it was a matter of hours.
They couldnt give blood or oxygen...makes sense now I guess your blood carries oxygen around the body and his blood couldnt do tha. He remained breathless for a long time and he said amidst that go home Im fine - I could see he was in pain as he kept rolling to his side, and my mum rubbed the lower part of his back. It was his kidneys aching. It took us this long to work out what the pain he always talked about was, noone ever mentioned it to him before, infact they suggested he have radiation many a time. He always said no because he knew how it affected the other organs but when the pain got to much he had additional radiotherapy not so long ago, he never yelled out just closed his eyes and bared the pain.
My mum told the doctor that if it was only a matter of hours, to make him really comfortable and to just to take his pain away, the doctor topped up his morphine on her request. He was still breathing quite heavily for quote a while he was aware that we were there we told him we were right there, I told him that I loved him and he closed his eyes and went to sleep. He passed away at 3 pm that afternoon.
I am so proud of my father for his strength his courage and his positivey throughout all of this. We had no drawn out speeches or long conversations as he was not that type of man. He enjoyed his last few months because he accepted his condition. He was only saddened when he spoke to us about his will, funeral etc but I think he was more sad for us.
Its taken me a long time to come back to this blog, and writing this is painful but I have learned so much from this..how important it is to contribute to Myeloma charities, here in the UK these charities are reliant on donations and not Government finding. Additionally I am now a blood donor and am so greatful for all the blood donors that my father was reliant on during his treatment.
To all of you that are reading my blog and are going through this, I am thinking of you X
Friday 24 June 2011
Monday 14 March 2011
Beggining of the End Stages of Myeloma
2 weeks following the news of his terminal diagnosis, his creatine levels are now 510, so his kidney are in pretty bad shape. His levels have never gone up so quickly than they have done in this period, and the effects of this are physically visible in his condition.
I thought dialysis perhaps would be an option but its not something that is given to myeloma patients unless they are diagnosed allot earlier on and have a much severe kidney condition. This is what I was told by the cancer specialist nurse at the hospital. I have been reading non stop and I have a friend who works at the local hospice who I often speak to for advice. Once the creatine levels go up, they don't come down, I guess its just the hopeful part in me, praying for a miracle, at the same time its not something you are told, unless you ask, but you don't necessary have the knowledge to ask if you haven't experienced it before. There is a direct relationship between these levels and your physical well being as we found out on a daily basis.
My dad was told that he was not fit enough to travel to perform his pilgrimage which left him pretty cut up, but like everything else he accepted the decision. It was the best decision also, as it means that my mum and husband will go in his place and I will be at home to look after him and spend some time with him.
The transfusion recommended by the consultant unfortunately was also unsuccessful as the 1 unit of blood he was given increased his BP quite significantly so they have decided not to give him anymore. I was kind of hoping again that the new blood would make a big difference as it often did in the past.
His course of dex finished yesterday, and the plan is to see his consultant in 2 weeks time.
Today he has decided to give up work as the anemia is taking its toll, he is sleeping quite allot and is quite weak, but if you ask him how he is he will tell you he is just fine. He doesnt want to many people to know as he doesn't want any fuss, we are just trying to keep things as normal as possible. I talked to him about moving his bed downstairs to make things easier but he has refused.
I asked for the prognosis for the first time in in 3 years and the consultant told me that as the disease was coming to its end stages and that we are looking at a few months with him. It was probably not the best call to make whilst at work. Even though i expected this it still felt like a shock hearing it out loud, I still cant imagine what life without him will be like my heart is breaking for my mother, my little sister for my daughter and mostly for him,but I can see him withdrawing ever so slightly, he said he feels like things are just shutting down, I don't suppose anyone can actually imagine what the physically feels like or really describe what that is like, but up until now it was kind of good not to know, because when you know thats all you will think about and it takes over everything. You want to try and cram in things that you meant to do and never got round to and think you need to have certain conversations and you become wrapped up in how it is going to affect you after they have gone and you lose focus on the person actually going through it.
To this day he has never complained,or got angry about his condition he has refused to let him break him and just got on with his life, then I guess who am I to feel sorry for him - I just feel immensely proud and embarrassed at myself for every time I complain about the smallest things in life.
What he shows me everyday is that despite the physical pain of what he is going through his strength of mind and will has kept him the dad I have always known him to be, and despite his pain he still always asked how I was how my daughter was, and when I would be coming around. He has never felt sorry for himself and even in the worst of days, he was still the same man.
The physical pain is a result of the damage to the kidneys from the radiation, we always knew that in most cases death occurs as a side effect to the treatment as opposed to the actual disease itself. I wish the doctors had of picked up on this instead of allowing him to continue to have radiotherapy.
The decline in his condition has been pretty rapid since the news, the drugs just stopped working. He has had pretty much all of ones that had been available to him. Allot of them were really quite harsh and he just could not manage them in particular the velcade. Its the nature of the beast I guess, or biology, the drugs become less effective the longer you take them hence the need to continually alter them.
If I were to do things differently I would have asked more questions with both my dad and the consultant. This is a rare type of cancer that has quite specific symptoms, and the new care teams that suddenly become available to you do not know the history like the consultant does, and you don't really have the time to go through them with them. The communication between the care teams and the hospital I found was shockingly poor.
If I had known how quickly things would have gone down hill or understood what was happening on a day to day basis I could have done so much more.
The key thing is that blood report detailing how everything is functioning, there are allot of elements to it, but by having some understanding on what is a normal level / high level you can then look at what this actually means from a boldly functioning perspective.
I thought dialysis perhaps would be an option but its not something that is given to myeloma patients unless they are diagnosed allot earlier on and have a much severe kidney condition. This is what I was told by the cancer specialist nurse at the hospital. I have been reading non stop and I have a friend who works at the local hospice who I often speak to for advice. Once the creatine levels go up, they don't come down, I guess its just the hopeful part in me, praying for a miracle, at the same time its not something you are told, unless you ask, but you don't necessary have the knowledge to ask if you haven't experienced it before. There is a direct relationship between these levels and your physical well being as we found out on a daily basis.
My dad was told that he was not fit enough to travel to perform his pilgrimage which left him pretty cut up, but like everything else he accepted the decision. It was the best decision also, as it means that my mum and husband will go in his place and I will be at home to look after him and spend some time with him.
The transfusion recommended by the consultant unfortunately was also unsuccessful as the 1 unit of blood he was given increased his BP quite significantly so they have decided not to give him anymore. I was kind of hoping again that the new blood would make a big difference as it often did in the past.
His course of dex finished yesterday, and the plan is to see his consultant in 2 weeks time.
Today he has decided to give up work as the anemia is taking its toll, he is sleeping quite allot and is quite weak, but if you ask him how he is he will tell you he is just fine. He doesnt want to many people to know as he doesn't want any fuss, we are just trying to keep things as normal as possible. I talked to him about moving his bed downstairs to make things easier but he has refused.
I asked for the prognosis for the first time in in 3 years and the consultant told me that as the disease was coming to its end stages and that we are looking at a few months with him. It was probably not the best call to make whilst at work. Even though i expected this it still felt like a shock hearing it out loud, I still cant imagine what life without him will be like my heart is breaking for my mother, my little sister for my daughter and mostly for him,but I can see him withdrawing ever so slightly, he said he feels like things are just shutting down, I don't suppose anyone can actually imagine what the physically feels like or really describe what that is like, but up until now it was kind of good not to know, because when you know thats all you will think about and it takes over everything. You want to try and cram in things that you meant to do and never got round to and think you need to have certain conversations and you become wrapped up in how it is going to affect you after they have gone and you lose focus on the person actually going through it.
To this day he has never complained,or got angry about his condition he has refused to let him break him and just got on with his life, then I guess who am I to feel sorry for him - I just feel immensely proud and embarrassed at myself for every time I complain about the smallest things in life.
What he shows me everyday is that despite the physical pain of what he is going through his strength of mind and will has kept him the dad I have always known him to be, and despite his pain he still always asked how I was how my daughter was, and when I would be coming around. He has never felt sorry for himself and even in the worst of days, he was still the same man.
The physical pain is a result of the damage to the kidneys from the radiation, we always knew that in most cases death occurs as a side effect to the treatment as opposed to the actual disease itself. I wish the doctors had of picked up on this instead of allowing him to continue to have radiotherapy.
The decline in his condition has been pretty rapid since the news, the drugs just stopped working. He has had pretty much all of ones that had been available to him. Allot of them were really quite harsh and he just could not manage them in particular the velcade. Its the nature of the beast I guess, or biology, the drugs become less effective the longer you take them hence the need to continually alter them.
If I were to do things differently I would have asked more questions with both my dad and the consultant. This is a rare type of cancer that has quite specific symptoms, and the new care teams that suddenly become available to you do not know the history like the consultant does, and you don't really have the time to go through them with them. The communication between the care teams and the hospital I found was shockingly poor.
If I had known how quickly things would have gone down hill or understood what was happening on a day to day basis I could have done so much more.
The key thing is that blood report detailing how everything is functioning, there are allot of elements to it, but by having some understanding on what is a normal level / high level you can then look at what this actually means from a boldly functioning perspective.
Thursday 3 March 2011
dealing with the news day by day
Its been little over a week since we were told that my dads condition was now terminal, and im not sure if im imagining it but he seems to be deteriorating. He is having more pain in his legs with cramps and tingling in his fingers, but one thing that never fails to perk him up is my daughter, his grand-daughter.
This still has not stopped him going to work!! he says it helps him get out and about and i guess keep living. He is booked in for some blood next week and the consultant wll be seeing him before he leaves for his trip. The doc said he didnt need to follow any particular diet as it wouldnt do any more damage but from what i have been reading i think the renal diet sounds like a good idea. It will help us to control his pottasium and phosphrus consumptions so things like tomatoes,pototoes and oranges and bananas will be out of bounds.
Im still holding out for a miracle and do believe that this could happen but at the same time, I dont want my dad to worry about whatever happens next. We will take everyday as it comes, he is here today and we will deal with whatever arrives for us tommorow.
He has told his closest friends and my mum said he has been getting quite upset, but afterwards he is just fine, it is not the easiest news to tell anyone especially close friends and family.
I havent told anyone at work, im in a new job and even though i have looked like absolute crap a few times noone has even asked me how i am, which is going to make it quite difficult when i am going to need more time off. I am considering quitting and finding a small part-time job somewhere close-by, but we shall see at the moment there is no point as my dad is working himself but i wont worry about that now. The main thing from my perspective is doing all that we can to make him more comfortable making him smile everyday and showing him that we will be there for him all the way.
This still has not stopped him going to work!! he says it helps him get out and about and i guess keep living. He is booked in for some blood next week and the consultant wll be seeing him before he leaves for his trip. The doc said he didnt need to follow any particular diet as it wouldnt do any more damage but from what i have been reading i think the renal diet sounds like a good idea. It will help us to control his pottasium and phosphrus consumptions so things like tomatoes,pototoes and oranges and bananas will be out of bounds.
Im still holding out for a miracle and do believe that this could happen but at the same time, I dont want my dad to worry about whatever happens next. We will take everyday as it comes, he is here today and we will deal with whatever arrives for us tommorow.
He has told his closest friends and my mum said he has been getting quite upset, but afterwards he is just fine, it is not the easiest news to tell anyone especially close friends and family.
I havent told anyone at work, im in a new job and even though i have looked like absolute crap a few times noone has even asked me how i am, which is going to make it quite difficult when i am going to need more time off. I am considering quitting and finding a small part-time job somewhere close-by, but we shall see at the moment there is no point as my dad is working himself but i wont worry about that now. The main thing from my perspective is doing all that we can to make him more comfortable making him smile everyday and showing him that we will be there for him all the way.
Tuesday 1 March 2011
That appointment
Its been a week since the news we were dreading so here goes.
Me and my sisers attended the appointment with my Dads consultant, straight of we were introduced to a new Doctor who would be joining us, a doctor that specialised in palliative treatment, working with the Macmillan team of nurses and with St Francis hospice.
We asked my doctors consultant to go through everything she had told my dad in his last appointment.
Basically due to the extent of damage to my fathers kidneys they are unable to give him any further chemo, as it would be too toxic for his body to handle and in her words "potentially bring on death faster" A normal persons creatine ranges from 90- 150. My fathers creatine levels have shot up from around 150 to 380 in 5 weeks, which suggests to her that the Myeloma is very active, and if she were to do a bone marrow test the levels of Cancer cells would be pretty high. He is not eligible for dialysis as someone requiring this needs to have a creatine level of around 800-900. She told us his kidneys have been failing for about a year and they classify his kidneys as renal failure. Therefore for this reason she needs to work with the new doctor to focus on what they can do improve his quality of his life and work to treat the symptoms.
The morphine he has been taking for so long will now be swapped for a new kind of pain killer in the form of a patch. He will also stop taking his oromorph and this will be replaced with something else, to ease the pressure on his kidneys. Any type of infection could now be fatal therefore the doctors made sure that my dad will always have someone around to be there for him.
The doctor asked my dad how he had been dealing with the disease and the news that he was given and his reply was " We all have to leave this world in some way or the next, I was worried at first but i accept the news and im just fine, its only when i have bad days that I actually realise im ill"
Having a week to deal with this has made a difference his doctor at Queens Hospital has been fantastic, you could see in her eyes that she was upset when talking to us and I appreciated that she cared for him. She called my dad a soldier for his ability to just keep going. The main focus for him is for him to go on this pilgrimage in a few weeks time, its taking his mind of things and reminds us all that actually noone knows when their time will come, but if that time is a little sooner then im grateful that he is able to do all the things he need to, to put his mind at ease.
My dad is absolutely amazing!
Me and my sisers attended the appointment with my Dads consultant, straight of we were introduced to a new Doctor who would be joining us, a doctor that specialised in palliative treatment, working with the Macmillan team of nurses and with St Francis hospice.
We asked my doctors consultant to go through everything she had told my dad in his last appointment.
Basically due to the extent of damage to my fathers kidneys they are unable to give him any further chemo, as it would be too toxic for his body to handle and in her words "potentially bring on death faster" A normal persons creatine ranges from 90- 150. My fathers creatine levels have shot up from around 150 to 380 in 5 weeks, which suggests to her that the Myeloma is very active, and if she were to do a bone marrow test the levels of Cancer cells would be pretty high. He is not eligible for dialysis as someone requiring this needs to have a creatine level of around 800-900. She told us his kidneys have been failing for about a year and they classify his kidneys as renal failure. Therefore for this reason she needs to work with the new doctor to focus on what they can do improve his quality of his life and work to treat the symptoms.
The morphine he has been taking for so long will now be swapped for a new kind of pain killer in the form of a patch. He will also stop taking his oromorph and this will be replaced with something else, to ease the pressure on his kidneys. Any type of infection could now be fatal therefore the doctors made sure that my dad will always have someone around to be there for him.
The doctor asked my dad how he had been dealing with the disease and the news that he was given and his reply was " We all have to leave this world in some way or the next, I was worried at first but i accept the news and im just fine, its only when i have bad days that I actually realise im ill"
Having a week to deal with this has made a difference his doctor at Queens Hospital has been fantastic, you could see in her eyes that she was upset when talking to us and I appreciated that she cared for him. She called my dad a soldier for his ability to just keep going. The main focus for him is for him to go on this pilgrimage in a few weeks time, its taking his mind of things and reminds us all that actually noone knows when their time will come, but if that time is a little sooner then im grateful that he is able to do all the things he need to, to put his mind at ease.
My dad is absolutely amazing!
Friday 25 February 2011
Good Read | National Kidney Foundation
This document was put together by the National Kidney Foundation, and I have really found it really useful. Its helped me to put together a few questions to ask the consultant next week.
I hope anyone who comes across this finds its useful too.
http://www.kidney.org/atoz/pdf/nutri_chronic.pdf
I hope anyone who comes across this finds its useful too.
http://www.kidney.org/atoz/pdf/nutri_chronic.pdf
2 days later but today is another day
Dad, has been busy getting his finances in order, closing down accounts, moving money around and generally making plans for when he is no longer here. He sat us all down yesterday to talk through his finances, his savings etc. It was really devastating, this was one of the few times not a single one of us could hold it together. One look at my forever optimistic mothers face just broke me. Shes never given up hope on my dad and just wanted him to stop talking about it. Its great that he has everything in order, so that my little sister who still lives at home does not need to take on responsibility of the house and expences. He has asked us to get in touch with Macmillan Cancer support on advice from his consultant.
I must have called him 5 times already, just to hear his chirpy voice at the other end (hes still working btw). my older sister has disappeared off or a long weekend she seems to always disappear when we receive bad news. Its her way of coping I guess but it really upsets me.
Today is another day, my dad is here and seems much better than he has been recently, hes making plans to go on a religious pilgrimage, I have been reading up on things he can do to help ease the stress on his kidneys. I guess allot hangs on what we will be told next week, i know my dad has not been completely open about the details of his condition and tries to mask the pain allot so im nervous about what the consultant will tell us......hopefully that she got it wrong...
I must have called him 5 times already, just to hear his chirpy voice at the other end (hes still working btw). my older sister has disappeared off or a long weekend she seems to always disappear when we receive bad news. Its her way of coping I guess but it really upsets me.
Today is another day, my dad is here and seems much better than he has been recently, hes making plans to go on a religious pilgrimage, I have been reading up on things he can do to help ease the stress on his kidneys. I guess allot hangs on what we will be told next week, i know my dad has not been completely open about the details of his condition and tries to mask the pain allot so im nervous about what the consultant will tell us......hopefully that she got it wrong...
Tuesday 22 February 2011
No more treatment
Dad has been quiet down for the past month or so, the last batch of radiotherapy has let him exhausted, im not sure how much it actually helped, its just the myeloma working its way through his body.
He had an appointment today, and was told that the myeloma has progressed, and that they had now exhausted all forms of treatment over the past few years. The consultant has asked to bring his family to the next appointment. What does that mean ? I know its not good news BUT what next ??
I dont want to give up hope, his kidneys are quite damaged but there are things you can do. This is not his time ! He has been given steroids to take for the next 4 days, and his consultant wants to see him every 2 weeks from now on.
There are so many fantastic blogs on myeloma im sure someone will be able to help in some way or another..
i feel like absolute crap......I cant imagine for one second what it must be like to tell your family news like this. I admire his strength to go on, to still put our needs before his, and the fact that he still has a sense of humour!
I will never complain about anything ever again, I don't have the right too.
He had an appointment today, and was told that the myeloma has progressed, and that they had now exhausted all forms of treatment over the past few years. The consultant has asked to bring his family to the next appointment. What does that mean ? I know its not good news BUT what next ??
I dont want to give up hope, his kidneys are quite damaged but there are things you can do. This is not his time ! He has been given steroids to take for the next 4 days, and his consultant wants to see him every 2 weeks from now on.
There are so many fantastic blogs on myeloma im sure someone will be able to help in some way or another..
i feel like absolute crap......I cant imagine for one second what it must be like to tell your family news like this. I admire his strength to go on, to still put our needs before his, and the fact that he still has a sense of humour!
I will never complain about anything ever again, I don't have the right too.
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