Welcome back!

Acute Lymphoblastic Leukaemia - just diagnosed!

@Northernsmito26 @praxedes
How are you both doing? I have been on a different post ‘awaiting stem cell transplant’ might be worth a look.
I have finished chemo now and waiting for date to go into Addenbrookes for transplant.
Still being so careful about who I see, miss my girls and grandchildren so much.
Think of you often and wonder how you are getting on xx

1 Like

I can imagine you have to be really careful at the moment. Must be so hard missing family. I really hope you get to see them soon X

2 Likes

Thanks @Nichola75, it’s 2 of my girls bday on wed ( only I could have 2 children born on the same day but 4 yrs apart!), I really want to see them both. Hoping the weather is good so then maybe we could meet outside :crossed_fingers::crossed_fingers:

1 Like

Wow - what are the chances of that! I have everything crossed that I’m able to cross that you have good weather and get to see them. Please let us know! X

2 Likes

Oh @Summertime, gosh that is planning, let’s hope you do get to see them both, yes, fingers crossed for you. My son was born on his great grandmothers birthday, 76yrs between them, and my son was actually able to drive her when he passed his driving test.
Yes, a very special bond.
Have a brilliant birthday on Wed, push the boat out and go for it, you deserve it.

1 Like

@Nichola75 @Erica and my mum passed on their birthday 2 years ago, so it is a special day in lots of ways xx

2 Likes

Even more important that you are together X

2 Likes

Gosh @Summertime what a day of mixed emotions for you. xx

2 Likes

@Nichola75 @Erica managed to see my girls yesterday and also today, we met at the cemetery where we laid some flowers for mum. Seeing family is so so important when we are going through something like this. It really lifts my spirits :slight_smile:

1 Like

That’s made my day! I’m so glad you got to see them. It must have been very emotional but so lovely for you all, especially the meaning the day has for you all. Hope those spirits are still lifted.
I feel so luck to have family around me. I know that’s not always the case. We are very lucky!
Lots and lots of love X

1 Like

Oh @Summertime, I am so pleased that you managed to see your girls yesterday and that you were able to meet at the cemetery and lay some flowers for your mum.
Yes, aren’t family absolutely priceless.

1 Like

Hi everyone I was diagnosed April last year with All after spending time in hospital with covid, pneumonia and sepsis then within 3 weeks I was diagnosed with leukaemia and whisked away for 4 weeks to start my treatment. To say last year was the toughest year ever was an understatement but after 8 months intensive chemo and now been on maintenance since February I am doing well. I wanted to show anyone going through treatment now that you can do it just take each day at a time and remember you are one day closer to the end

3 Likes

Hi @Vickim100 and welcome to the forum. It’s really great to hear your story and for people to hear that you got through it and are well. I think it’s so important.
You sound like you you have had a hard 8 months. It must have been exhausting and a complete shock when you got diagnosed?
One day at a time is definitely the way to go - sometimes just an hour at a time.
Please keep posting. Your experiences will really support others on the forum X

2 Likes

Hi @Vickim100 you have already shown the value of our forum, thanks so much.
You really did have the toughest year ever last year with so many unexpected medical twists and turns.
How are you finding your energy levels as you and your body have been through so much emotionally, physically and practically and I find it takes me so long to build myself back up.
What have you been doing with your time this year?

1 Like

Thank you @Vickim100, it helps a lot to hear positive stories x

3 Likes

Hello Summertime, hope you’re keeping well.

I haven’t been on here for a while. Finished my cycle 2 last Monday and I’m back in hospital while my neutrophils go up. I had most of treatment while staying at home but was admitted last week due to levels and I got a fever. Just waiting for them to go up so I can go home. Getting fed up now as wanted to be home before the kids start school but it’s not looking that way.
My last intrathecal caused me to have such a painful headache. Still have it a bit today and I had that last Thursday. Very painful but hopefully over the worst of it.
I found being home at first a bit stressful at first. Don’t know if it was because I was in hospital so long before and so I felt a bit on edge, like I was going to suddenly fall ill but I think I better prepared this time round and I’ll definitely will try to enjoy that time in between treatment.
How was cycle 3 for you? Was it as bad as it sounds?
Are you still waiting for a match for the transplant? Hope it happens soon for you and you get your date set. I’m September.
They are not sure if I’m going to have a transplant yet-they’ll decide later down the line.
Read that you got to see family. So glad you got to meet up for their birthdays. Yes seeing family is all that matters. Just want to get home and be ‘normal’ for a bit and see people.
Take care of yourself xxxx

3 Likes

Thank you for your message. Gives me such hope! Things can get very dark sometimes, no matter how much I try to be positive. Thank you for sharing your journey xxxx

3 Likes

@Northernsmito26 hi, lovely to hear from you. I was in Hospital for 2 lots of 5 nights with the 3rd cycle. It was methotrexate, which apparently is very toxic so they have fluids iv running until it’s out of your system. I didn’t have much of an issue except for low blood pressure. It is very hard being away from everyone though.

Are you allowed visitors? Just remind me where you are based?

I was supposed to be going into Addenbrookes for transplant on Monday but it’s been put back to mid sept. So I have a few weeks at home, trying to do normal things but still being so careful. I know what you mean about being a bit anxious, I am too about going anywhere. My girls are older but if yours are still at home must be harder for you :relieved:.

I got into some Netflix series to keep me going in hosp and the nurses were lovely but it’s not the same as being home is it.

Take care - hope the time goes quickly for you xx

2 Likes

Thank you all for making me so welcome. As I have chemo till at least Christmas 2022 my energy levels are abit low but still managed to go back to work 2 days a week which I love. northernsmito26 when I have intravecal they advised me to drink plenty of caffeine afterwards to help with headaches and started using a mindfulness app and doing breathing exercises which helped me focus on something else other than being ill and depressed. I also recommend getting Charlie Mackesy book ‘the boy, the mole, the fox and the horse’ it got me through some dark times and for all you survivors storms do end just keep looking for your rainbow :rainbow:

1 Like

That is such an amazing book. I bought it for my children, myself and lots of other people and dip in to it often.
Chemo until 2022 must feel like a long road. It’s seems that you have found lots of things to help you through the harder times which is good to hear.
What do you do for work?

1 Like