Hi there,
Just thought i would introduce myself to those i havent already spoken too.
On 5th Oct 2012 my mum was diagnosed with ALL after being poorly for a few weeks. Looking back she had been lethargic for a while but we always put it down to age and her caring for my niece 4 days a week. She went into A and E the week before diagnosis with chest pains thinking she was having a heart attack and also lots of bruising over her body. A week later she was diagnosed and our world changed.....
My mum is by herself so i moved back home to live with her leaving a very understanding partner at home. My sister who has a family took on a lot of the day time care whilst i worked 3 days a week. Anyone else on the UKALL14 trial will know the protocol is extremely intense and in the stage 2 we were travelling to the hopsital 6 days a week for chemo...
Due to age being a high risk factor in ALL mum met the with the Bone Marrow Transplant Team and they set the wheels in motion for looking for a donor... (initial assessment was in January) They had one donor lined up but lost him and a 2nd donor was found. Mum was admitted on 8th May and had her transplant on 15th May 2013.
Transplant itself wasnt too bad and actually some of the infections she had when going through chemo were much worse as she had 2 nasty cases of e - coli. With the transplant what has been hard is the recovery as it takes time and comes with side affects..
She is currently being treated for GVHD and will hopefully be recieving photopheresis treatment to help sort that out as she has it on her skin and gut. Most the time it has been treated with steroids and creams but she had a nasty bout of it last week which is why they are looking at other treatment...
I wanted to share my story as when i was looking for ALL stories there wasnt much on the internet so i am overjoyed to see this group especially for ALL patients and families. For those who have just been diagnosed it is a long treatment ..more so than most cancers but it is curable. My mum is slowly getting her life back together and it has been a tough 14 months but it has brought our family incredibly close.
Helen xxxxxxxxxxx
Paul
You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.
Hi
hasn't been active on the forum for a few years so I don't know if you will get a response from her. How is your father in law getting on?
Paul
You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.
