Hi Kookie47,
Like your mother I received my diagnoses from my GP via the phone, there is no easy way to hear such news.
I found the next few months a whirlwind of appointments and treatment which was a relief that everything started so quickly. The response from the hospital and GP surgery working together was wonderful so I hope you find the same.
My regime of drugs made me quite shaky and I did not feel able to drive so having family support was invaluable. Weekly treatment was a tie and the effect on me was very cyclical. The first 2 days after the chemo I was ok, the next two I was very tired then I gradually gained strength ready for the next dose.
Myeloma uk do a number of booklets, all of which I found useful. I do wish I had obtained their diary at the start of treatment as I would have found it useful to record responses to treatment, lists of drugs etc as when I needed to remember my memory often let me down.
After 6 cycles of chemo, mostly injection in the stomach, not so bad as it sounds and over quickly, came harvesting of stem cells for stem cell transplant. This entailed 3 days for collection in my case. There was then a wait of several months before the first of 2 stem cell transplants. This will be some way off for your mother so I won’t go into detail as it may not be suitable for her.
In the whole process some of it was uncomfortable, hardly any painful. My immunity dropped significantly several times due to the medication so I had to be careful mixing in public and having visitors. My diagnoses was 2 years ago so for me there were times when it felt like an extended lockdown. Modern technology was a blessing, being able to keep in touch with people so easily.
I am reaching the end of my active treatment , with only 2 bone enhancing infusions left to go and am in complete remission. The monthly blood tests will hopefully reduce and then it’s just fingers crossed that the maintenance medication does its stuff and any relapses are somewhere over the horizon.
It is hard to reply in detail as all the treatment is so individual as everyone responds differently. I would recommend listing any questions you have and writing down the answers . Don’t read too much from the internet as much of it is out of date and no longer relevant. There are ups and downs but there still plenty of good moments even whilst going through the whole process and two years in and I’m feeling quite normal.
Although I am the one that had to undergo all the medical treatment I am also aware that the whole process was hard on my family too. Do remember to take care of yourself .
Best wishes.
Hi Kookie47,
Like your mother I received my diagnoses from my GP via the phone, there is no easy way to hear such news.
I found the next few months a whirlwind of appointments and treatment which was a relief that everything started so quickly. The response from the hospital and GP surgery working together was wonderful so I hope you find the same.
My regime of drugs made me quite shaky and I did not feel able to drive so having family support was invaluable. Weekly treatment was a tie and the effect on me was very cyclical. The first 2 days after the chemo I was ok, the next two I was very tired then I gradually gained strength ready for the next dose.
Myeloma uk do a number of booklets, all of which I found useful. I do wish I had obtained their diary at the start of treatment as I would have found it useful to record responses to treatment, lists of drugs etc as when I needed to remember my memory often let me down.
After 6 cycles of chemo, mostly injection in the stomach, not so bad as it sounds and over quickly, came harvesting of stem cells for stem cell transplant. This entailed 3 days for collection in my case. There was then a wait of several months before the first of 2 stem cell transplants. This will be some way off for your mother so I won’t go into detail as it may not be suitable for her.
In the whole process some of it was uncomfortable, hardly any painful. My immunity dropped significantly several times due to the medication so I had to be careful mixing in public and having visitors. My diagnoses was 2 years ago so for me there were times when it felt like an extended lockdown. Modern technology was a blessing, being able to keep in touch with people so easily.
I am reaching the end of my active treatment , with only 2 bone enhancing infusions left to go and am in complete remission. The monthly blood tests will hopefully reduce and then it’s just fingers crossed that the maintenance medication does its stuff and any relapses are somewhere over the horizon.
It is hard to reply in detail as all the treatment is so individual as everyone responds differently. I would recommend listing any questions you have and writing down the answers . Don’t read too much from the internet as much of it is out of date and no longer relevant. There are ups and downs but there still plenty of good moments even whilst going through the whole process and two years in and I’m feeling quite normal.
Although I am the one that had to undergo all the medical treatment I am also aware that the whole process was hard on my family too. Do remember to take care of yourself .
Best wishes.