Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
I’ve been out of hospital for a week now. Stayed in for the full 28 days, so didn’t have to go to my brothers home who lives near the hospital. Shame really as I was looking forward to bossing him around, getting him to adjust my pillows, make me sandwiches and cups of coffee.
I got away with the treatment very lightly, because I had minimal side effects. Apart from C.DIF. Feels good to be home with my husband and cats. Nice to have a home cooked meal. The hospital food was ok but very monotonous.
Have to go back every week for blood tests and to see the consultant. Got told off last time as I didn’t tell them I have a cold. But I didn’t have a temperature with it!
Hope you are all well.
Hi Lyn, great update and you are home - bliss
During these early days it is important to report every change as early intervention is a good rule.
Let’s look for for the next weeks to go in with good blood results and an improvement in all aspects of your wellbeing ((hugs))
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Hi Lyn, that sounds really positive and should bode well for the future especially re neurotoxicity and may reflect the changes and fine tuning of the treatment as they continue to learn about this type of treatment.
I am sure your brother is relieved for a number of reasons ;)
Hi again, just a quick update . Had a phone call from one of the doctors at the hospital my PET Scan shows no activity I’m in REMISSION. Let’s hope I stay there this time.
that’s TERRIFIC NEWS!!!!! so thrilled for you!!!!!
Oh I am just in to your news Lyn - I am doing my happy dance - way to go....... I think this is a good reason for a Single Malt.
excellent news and long may it last!!!
That is fantastic news am so happy for you
Hi Lyn, so so happy for you!!! I’m terribly sorry that I’ve been silent for ages. My husband has been back in UCLH icu for 3 weeks now with second episode of neurotoxicity.
He’s not doing good. Has lost cognitive skills, mobility, vision and has been on 24x7 121 care.
The consultants are flummoxed as to why they can’t recerse the neurotoxicity. We are preparing for the worst.
((Hugs)) Sue and let’s look for his team to turn the corner on this xx
Big hugs Sue, really hope his team find a way to help and get him through this
Hi Sue, sorry to hear Paul is not doing to well , please don’t be sorry for being silent for a while you’re had far more important things to deal with. Try to keep positive & my thought are with you & your family.
love & hugs Lyn x
My husband passed away on the 4th as the neurotoxicity was irreversible. I'm beyond devastated as he was my best friend and soulmate. Our boys and I are lost without but I know that time and all the memories we've made together will help us cope with his loss.
I am so very sorry, you must all be devastated. Thinking of you all and hoping those memories will help you through these dark times.
sending condolences, love and hugs xxxx
Oh Sue, I am so so sorry to hear this....... I have no words that can make this any better...... all I can do is send warm and caring ((hugs))
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