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
Friday, 25 February 2011
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.
Saturday, 1 January 2011
2011
Firstly Happy New Year all! My daughter turned 3 last month which means it has been just over 3 years since Dad was diagnosed with MM.
Its been quite a while since my last post, Dad came off the Velcade after 2 cycles proved to be 2 too many. The after effects kept him in bed for weeks afterwards with crippling pains and tingly feelings in his hands and feet.It is supposed to be one of the most effective but expensive forms of treatment for MM. If he has received this treatment when he was first diagnosed he may have had a better tolerance towards it as he was healthier but at this stage and age! his body has not been able to cope with it. Anyway they have put him back on the original combination of drugs he was given when he was first diagnosed.
Its hard to tell how Dad has been doing recently, he has just learnt to get on with things and not really talk about it too much. The pain in his back came back a few months ago which meant he decided to go ahead and have some more radiotherapy which he really really didn't want to do. He had 6 rounds in 7 days...im not sure if it worked because it has been a fair few weeks now and the pain is still quite intense. He is allot more tired recently because of it and is continually taking morphine to help with the pain..I think we will need to discuss this in more detail with the doctor when we see her in a weeks time but i am praying that having the radiotherapy was worthwhile and the pain will just ease soon!
On the more positive side, the past 6 months (despite the Cancer) have been good, Dad has been working as per usual, has gone off certain foods, but is eating healthy portions, he has lost a few teeth but that doesnt stop him smiling, his hair just keeps coming back which is fantastic - he turns 70 this year and he's got a family that adore him so he's got plenty to live for and he knows it :)
Its been quite a while since my last post, Dad came off the Velcade after 2 cycles proved to be 2 too many. The after effects kept him in bed for weeks afterwards with crippling pains and tingly feelings in his hands and feet.It is supposed to be one of the most effective but expensive forms of treatment for MM. If he has received this treatment when he was first diagnosed he may have had a better tolerance towards it as he was healthier but at this stage and age! his body has not been able to cope with it. Anyway they have put him back on the original combination of drugs he was given when he was first diagnosed.
Its hard to tell how Dad has been doing recently, he has just learnt to get on with things and not really talk about it too much. The pain in his back came back a few months ago which meant he decided to go ahead and have some more radiotherapy which he really really didn't want to do. He had 6 rounds in 7 days...im not sure if it worked because it has been a fair few weeks now and the pain is still quite intense. He is allot more tired recently because of it and is continually taking morphine to help with the pain..I think we will need to discuss this in more detail with the doctor when we see her in a weeks time but i am praying that having the radiotherapy was worthwhile and the pain will just ease soon!
On the more positive side, the past 6 months (despite the Cancer) have been good, Dad has been working as per usual, has gone off certain foods, but is eating healthy portions, he has lost a few teeth but that doesnt stop him smiling, his hair just keeps coming back which is fantastic - he turns 70 this year and he's got a family that adore him so he's got plenty to live for and he knows it :)
Sunday, 13 June 2010
Dads progress
Dads last stint in hospital lasted 2 days which wasnt too bad, he was given antibiotics again to treat the infection and sent home. His doctors havent yet started his treatment up again, as the reactions he has had have been pretty severe. The swelling in his feet comes and goes . At the moment he is having tingly sensations in the soles of his feet only, he said it isnt as painful as it was initially. His skin has darkened quite a lot too, just like it was when he was having chemotherapy the first time round, but this time he hasnt had it for a few months. His teeth have gotten pretty bad too from all the treatment, but it doesnt seem to bother him - hes still smiling and still pretty active. He seems to be shaky on his feet after he has been sitting for a while but once hes up and about hes fine. He is still working full-time, and yesterday he was doing some gardening, setting up a bonfire and playing with his grand-daughter. He amazes me how he is able to put his condition to one side and just carry on enjoying his life. Despite the seriousness of his condition and all the painkillers he takes on a daily basis, at 69 years of age he is an example of how inner strength,family, and a lot of distractions makes life with myeloma not as tragic as I thought it was..
Friday, 14 May 2010
Dad Admitted again...
Dad has been admitted this morning. He had a slight temperature last night and called the NHS helpline this morning, who said it was probably best if he came in. After an initial assessment he has been moved to another unit and is currently waiting to be seen by the haematology team. He has not been on the velcade for about a month now due to swelling one of the drugs caused on his leg. After 4 weeks the swelling has now come down but he is still experiencing some pain in that leg. On my way to the hospital now...:(
Saturday, 1 May 2010
Velcade
The Velcade has been put on hold for a few weeks again, as my Dad has had some more swelling on his legs. However this time its not going away. Both legs are affected but the right leg is pretty bad. He has had a scan to check or blood clots and the heart, lungs and everything else is clear. He has been given something from his GP to help drain the fluid but that doesn't seem to be doing anything. Some of his other drugs have been stopped too, especially those which cause drowsiness, as he managed to fall asleep during one of his appointments - which is really worrying. He has been booked in for a scan in two weeks time of his stomach, something to do with fluid travelling to and from his leg from his stomach. It has been making some strange noises like indegestion but very very loud. The swelling is causing him alot of pain and nothing really seems to be helping, he keeps it elevated for most of the day and tries to keep the weight off from it..hopefully it will go down soon, and more importantly the doctors work out what has been causing it,so that it doesnt stop his treatment from being held up for much longer.
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