Day 1307

Hi Greg

Its strange as when I go to Barts I love to sit out in the square in the summer by the fountain as it makes me feel calm and safe. When i went back to work  after my SCT I sometimes would go and eat my lunch there as I felt safe..

Whilst I have memories that weren't great now I mostly have positive feelings going there.. As they say time is a great healer.. day 2287. I have an app for that lol!

Hi Paul,

I agree, there is definitely a sense of being looked after whilst I am there. It’s a very confusing experience to go back. Now that I am 3 years after the event, I think I can rationalise it better. I think for me the hospital became a prison and I am fairly certain that I had some sort of mental breakdown during the extended re-admission I had for GvHD. It’s hard to describe it, partly because I can’t really remember and partly because I don’t want to, but it was an almost complete loss of mental control. Thankfully I have now got that control back, but every time I step back into that building, the visual reminders of the place make me feel uneasy - I’m sure it’s some form of PTSD. You’re right, time is a great healer, and the intensity of feeling is not as strong each time I go back, it was just that on Tuesday I was briefly transported back to the worst time of my life, and so I just wanted to say to those in the middle of a bad patch, I remember how awful it can be, but it definitely won’t be like it forever, and you can get definitely get your life to where you want it to be.

Cheers

Greg

Hi Greg,

memories like that are unkind, the human brain does indeed block out scary life threatening stuff when you are so ill. PTSD is very common after experiences like this, and counselling truly can help. 

Hugs xxx

I just had a look and I am 1414 days post Allo number two.

The last time we were in The Beatson in Glasgow was August 2016 so I don't have that tigger with going through the doors....... but I have had lots of Video Conferences with my team until I was discharged in June last year.

I am also up at our local hospital a lot as I help out on a few Maggie's and Macmillan projects. But I see this as a positive aspect of the long journey I have been on. I also go in past and see the Dermatology staff from time to time as they did see me at my worst over the first 14 years.

I always feel encouraged when I drive away from the hospital as I know it could have been a totally different result.

Our lasting memory of The Beatson was on the day I was sent home post second Allo. A member of the nursing staff wheeled me out in my wheelchair, we stopped and looked back at the doors and reflected that it was amazing that I was even coming out the front doors and not being 'transported' out the back doors.

The nurse was rather emotional as she was one of the main nursing staff that looked after me. She was also from Inverness so we all had made a connection. She confirmed that on a number of occasions it had been touch and go.

I initially found it hard when my safety blanket was taken away when I was discharged. My consultant said " Mike, just go and live, you have our number" its was like I had been set adrift in a boat...... then I was hit by survivors guilty (again) when I reflected on a few good friends who did not survive their cancer journey......... but I then was reminded that we had all sat around a cup of coffee and agreed that the last one that was still standing would live life to the full....... and live it for them.

Its good to reflect and to look at the distance we all have come.

My wife has decided that the kitchen has to be replaced........ onwards and upwards.

I haven't been checking the forum for a while. Though I like to help people, especially after all the help I had, it was getting me down to be reminded of the harshness of the treatment, like a form of PSTD.  

I too had my three monthly check today. After my SCT in June 2017, my immunity (as measured by CD4) went up quite quickly to 1.9 where 3 is normal (Some doctors put the decimal point in a different place.) But then for the next year it stuck stubbornly around 2.2. Earlier this year it jumped to 2.9. Three months later it's 4. I'm not quite off the leash yet, as they like you to have two normal tests, but they have taken me off co-trimoxazole. 

Some time ago I heard of a couple of studies that found immunity improved after contact with the natural world. I have spent a lot of time gardening this year. I do try to avoid getting scratched or cut, or breathe in dust or spores. But I allow myself contact with plants and soil, I even emptied the compost bin. Seems to have worked. And the garden looks a lot better.

Tessa

Hi Tessa, I’ve followed your story for a long time , mine is a bit different as I’ve just had CAR-T treatment. Glad you’re doing OK . Hope it won’t be to long before I can get back in the garden even if it just to wander around looking at the up & coming Autumn spectacular, it really does cheer you up being in the garden. 

Lyn x

Hi Tessa,

daughter has (as you know I guess) been mixing with folk and gardening etc since the early-ish times (being careful of course)  after her allo in 2011 but her immune level obstinately stays below 1. (Low ‘normal is around 6 I believe) So it seems that the Oxford hospitals will be boosting her again this winter with immunoglobulin. 

Remains to be seen if it will ever improve, after all she is a statistic of one, and has had an awful lot of chemo over the years.....

hugs xxx

Hi Moomy

When I looked up 'normal' CD4 on the internet I found 5 or 6 usually quoted as the lower end of the range.  But my hospital - who are pretty cautious in most respects - seem to look for 3. I've had a few short lived colds and sore throats - but much fewer than I had before I had AML. I'm not sure if that's because I'm more careful about touching hand rails etc in public places, or it's the acyclovir and penicillin I take. 

I think I am now so in the habit of being careful, being told I am normal won't change my behaviour much. I'm still boiling my drinking water and avoiding foods like runny eggs and prawn sandwiches (but I miss those). As I can't have the measles jab, I will continue to avoid strange children in public places.

Tessa

Maybe 3 is the CD4 level they think is safe if supported with aciclovir and penicillin and 5 or 6 would require no medication at all. 

Tessa

Great to hear updates from you Tessa, you are a true inspiration to us all.

CD4.....I have never ever asked about this. Check in with my GP next week and 6 month bloods so I am going to ask about this.

Autumn is our favourite time of the year. We will have our yearly trip 60 miles south from us to Perthshire to the 'BIg Tree Country" to see the amazing colours (not my picture)