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.

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.

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!