Glandular Fever & Pituitary Gland

Hi Mark

Glad your feeling a bit better after what must have been a tough time. 

I had my transplant around the same time as you,I think the day before you.

I was in for six weeks ended up in critical care for 8 days which was pretty scary. I dont think they thought I would survive as my consultant advised my wife to get my sons down to my bedside ASAP. I cant remember a lot about it but it has definately left me with PTSD and I have done a lot of crying in the last few months.

Seeing a counsellor has definately helped a lot,my hospital arranged to see one straight away and I accepted. 

I have had one week in hospital since then and am not feeling too bad at the moment

.I have noticed you are a runner,I too am a keen runner, lets hope we are both back running again soon !!

Mark

It is a journey like no other and the post treatment unpacking can take some time.

I am safe to say that I did not suffer PTSD as on the whole we have not had any lasting issues.

As moomy says, survivors guilt it very real and that has been my main hurdle and even a few weeks back another friend died from breast cancer in her mid 30s leaving 2 under 2 year old boys - that is 4 friends during my 4 years post SCT so thankfully we have identified this trigger and have clear strategies in place to work this out.

It’s good to talk over stuff face to face with an expert - it helps a lot. Our local Maggie’s Centre has been amazing.

Yes, survivors guilt can hit even if it’s not cancer related, daughter had a musician friend couple die  during the end of the summer in a plane accident with their little boy, the obit was in BBC Music magazine, she found it tough and retreated into herself a bit. 
hugs xxx

Sad when anyone young goes. I had to take a break from this site over the summer. Sometimes too much talking or reading revives memories you dont want.  Its a case of finding the right level and the right listener.. i neither like the Get Well Soon people who want you to hurry up and be normal again. Nor the gloomy people who only see the worst.

Tessa

Hi Tessa,

Therein lies the inherent paradox of this site. At times, it can be incredibly sad, and reading about other posters problems can drag up all sorts of painful memories. 

On the other hand, I force myself to remember how much of a lifeline this was to me at my lowest, and even if my presence helps someone in any tiny way, I reason it has got to be worth it. I write this in a busy office building where I’m living out my “normal” life. There is nothing much normal about the SCT process so I hope just by being here and supporting shows that the nightmare of the present doesn’t have to go on forever. 

I won’t say get well soon, only hope that you are doing as best as can be.

Greg

I agree that at times it can be hard reading but I find it a valuable escape and a great fall back. On this journey unfortunately people fall as I’ve found out 1st hand but I’m here more for the people like Moomy and her daughter who lived what I’m living disease wise and are still here. Everyone else’s advice and stories are also invaluable and show that everyone’s journey is different, like Greg, Mike, Parkrun Paul1969, & Tessa. 
I was back in yesterday and had a chat with the consultant who spent a lot of time on me in my darkest hours and he admitted I was extremely lucky to be stood where I was. He said fit & healthy people take months off work with a case as severe as mine so so close to a transplant I was extremely lucky. He said I was in a catatonic state and they honestly didn’t know what was wrong. 
I’m not going to lie but it made me feel all what if again and feel myself getting upset when I talk about it. There is definitely something physiological going on that needs to be addressed.
Parkrun, sounds like you’ve had a tough time during yours and I can fully sympathise with how you feel and probably still do. As I said for me I can’t stop thinking what if and then I think of my cancer and start thinking what if with regards to that and I end up getting  upset. With regards to running, yes I love it. Even managed a few short runs a few weeks back before the EBV took hold. Going to do a marathon again for one of the charities if IV can get back to any kind of fitness, how about you??
As far as the EBV goes I’m now negative which is good but more test are required on my brain as they still don’t know what’s happened and is still happening. I’m still a little delicate with stomach issues but I’m here, I’m still here, alive  turning corners, riding this rollercoaster and after listening to to everyone around me tell me about the last few weeks, I will happily happily take that. 
Have a great weekend guys cheering on England. 
Regards

Mark x

As you can see with me writing messages, up and about at 4.30 in the morning, I’m on steriods!

Mark, well written thoughts and often just putting them down on paper can help put some prospective on the journey - a man ((hug)) from me and yes - come on England

Hi Mark,

I’m glad you’re seeing some improvement.

Just wanted to say the “what if’s” will likely swirl around for a while, especially after such an intense experience as you’ve had. Time is a great healer with that, but it will take time if that makes sense?

Also, not sure what steroid you are on, but when I was on high dose prednisolone, I was an emotional wreck. Steroids don’t create emotions but boy do they point the edges, so I’m hoping you’ll find yourself on a slightly more even keel as you are weaned off those.

Greg

Hi Mark,

just to say I’m thinking of you, and to advise coming off those steroids (when you do) slowly as a sudden drop really can give you a psychological reaction of a ‘downer’!

hugs xxx

Hey Moomy,

Although it requires further investigation they seem to think the issue with pituitary gland may require life long medication made up of thyroxine and .........steriods!! Great! 
Regards

Mark x