Transformed follicular lymphoma

Hi Peter,

A couple of tips from me:

Breathing techniques are great - you’ll find loads of examples on the internet. I was skeptical at first but they really help to settle you when you need it. As with anything, it takes time and practice to get the benefit of them (at least a few weeks in my experience) but I think they’re worth a try for stress busting.

The other idea I have is more philosophical in nature. It’s about relinquishing control - we are programmed to want to control everything - but some things we just have to let go and let them be. My psychologist said to me he spent 18 months without watching or reading a single news bulletin and it did him the power of good - I didn’t go that far, but I did try to stop myself focusing on things that didn’t really matter to me as an individual - our lives are quite simple really - they are right in front of us, in the moment - a lot of the stuff we put a lot of value on is actually just noise. So I just thought, do I really need this, is it really helping me? And if the answer is no, I just switch it off (literally and metaphorically)

Hope this helps

Greg

Hello Mike,

Thank you so very much for that, I am feeling better now as I have had a sleep and can understand what you mean, tomorrow I will go and buy  a few post it note pads and get stuck in. Tina my wife, my 3 children John, William and Alexandra who struggle to understand my feelings even though they want to, I feel I am hurting them because of this rotten disease, that changes me.

So I will do something about it, like getting that backpack off and leave it in the corner.

I'm already grazing as I've lost interest in so many foods, but some I can eat lots of, like rice pudding, Jam roll, chocolate cake, fruit and veg oh and of course chocolate bars. Not worried about weight as its fluctuating so much with water retention.

Thanks again

Greg,

Thank you as well, I already do breathing exercises, my team got me to do them last week while in hospital and I've continued since. I've given up reading the news as it is annoying, regardless of the subject matter, but especially the politics at the moment.

Hi Peter,

try, too, the notebook-by-the-bed trick, anything that you are worried about when you go to bed gets written down and therefore ‘parked’ for the night, only checked in the morning when you feel able to do so. If it’s still pertinent then act on it and do something specific to deal with it. If it’s not a worry any longer then that’s one less! 

Hugs xxx

Hello Moomy,

I have got my notebook with me at all times, since July last year. Its funny looking back at some of it, some are  incomprehensible, others are clear and precise.    

Its a bit of a job writing at night without waking my wife up, we are both light sleepers.

Well its been a while since my last post, sadly my notebook filling has fallen by the wayside recently as I've been quite sick, spent 4 nights in our local hospital in the CCU thankfully as they seem to be well staffed. I was kept in as my neutrophils had dropped to 0.5 and I had an infection that they can't pinpoint .

Downside to the antibiotics, I came out in a terrible rash after discharge, which has been corrected by the Marsden. Sleep is again a major issue as I am now on cycle 2 which is running a week later than it should be. I've also lost heaps of weight, now down to 91.45Kg and grazing doesnt seem to help. Only started walking again yesterday after 2 weeks away from it as I was so exausted all the time, aiming for a mile today as yesterday was around the 3/4 mile.

Mike I've given up on the post it notes for now as we are all struggling with finding positives, maybe that will change in the next week as I get out more.

More info on this so called bone marrow lark. Its not going to be that it is SCT. they are hoping after my last chemo round on 19th July that the CT scan will show that I will be able to progress to that, so its fingers x'd here.

Hope you are all keeping well

Hi Peter, what you are experiencing can be summed up with this picture below

But this is moving forward, the very fact that you mention the lack of 'positives' actually say to me that you are still looking for them........ and they will come..... its just hard work at times.

A week in this journey is a long time and things can change lots during these days but lets look for a clear plan to come onto the table soon.

Hahahaha How right you are Mike, so many pitfalls in life and I've not looked at them for a while.

BTW did you watch the programme last night on BBC2 "War in the Blood", its available on i-player. Incredible stories I felt.

Yes, the cartoon says it all.

I have the program recorded and will watch it later on today, from what Greg has said it may take me back to some memories from three and a half years back - lets see.

I think back in the day when SCT was in its infancy there was most likely was a program just the same...... now look where we are.

Taking the good of the sun as I am making a stair for my daughters new “massive” port-a-cabin that was craned over their house a few weeks back. Moving her fast growing online business out of the back bedroom. Dad's past life skills coming in handy.

Take care my friend.

Well done Dad , 10 years ago I build my workshop, its only 12 x10 but in our postage stamp garden it looks huge. Its got my project motorbike in it and far to much junk thats taken over the last 5 years, will have a clear out before to long, I have some assistance for that LOL.