Transformed follicular lymphoma

Hello Mike,

I will talk to my specialist nurse tomorrow, thanks for your comment.

Well all sorted out and its a positive, I think a lot of problems start when we fail to understand each other and consequently feel a bit agrieved. I had my GEM-P yesterday and it was all over in an hour, doctor has told me that I will be in next week overnight again as the chemo will be the (more than likely) the bug bear for me as its going to be quite aggressive on my system, but that I will have a nurse by me for the day and night as they think it'll take a very long time.

Today I really feel sparky, which is a real bonus so its off out shortly for my 1st 5 miler in months .

Not sure how others felt when dealing with diet, but I feel like I am changing and I'm not really looking forward to eating meat, is that good or bad?

Water retenton seems to be sorting itself out quite well wihout any help, but getting up 4 to 5 times a night is interesting as when I get back into bed I'm gone again LOL.

Have a good weekend all.

Sparky

Big no to big meals and meat was not high on my list but grazing was the way forward.

At some times if going to the loo was a sport Scotland would have a world Champ.

Have a great weekend.

Sparky, its me legs mum lol, they are alive and tingle like an old cow prod thing  (12v?).

I daren't tell my middle son about meat, he's a vegan, he'll be like a born again evangelist to stop me eating it and I do like a little meat, just not every day, so will just keep my big mouth shut about it. Plus of course I eat all the other stuff, milk, cream, butter, cheese, fish. Its just a question of quality not quantity a little and offten.

Had my walk was utterly spent when I got home, but its great to get something right and I feel really good at the moment.

Yes the loo is visited often as well.

Well Had my 1st infusion of Cisplatin Fiday night but it all kicked off with the protections for kidneys and hydration. It took 24 hours for the whole lot, but I was so impressed with the staff, always turning up every few minutes. Sadly sleep was patchy at best  had 2 nights of 3-4 hours max but took a sleeping pill last night and a nice8 hour sleep, so off to have a walk today.

Keep well all

Hi Peter, always reassuring when the staff are ‘on it’ 

The first infusion of any meds is a walk in the dark but good that you have come out the other end.

Enjoy your walk.......and keep drinking the water.

Hello Mike,

Didn't turn out much of a walk, it got very hot so we took it easy and did about 1.5 miles. Tomorrows cooler so might be better

Good morning Peter, well done you and and I am sure that you are feeling the benefits of the walks.......just remember that some treatment do make your skin more open to sun burn so get that factor 50 out.

Yesterday went from a lovely warm day in the garden to heavy rain in the afternoon and all that was missing was snow..... so looking like a normal Highland summer then

I was at our local Maggie’s Centre yesterday afternoon to our monthly Haematology Support Group that my Haematology Specialist Nurse and I help run and meet a man who has the same type of rare NHL as me. He is the very first person I have meet in my 20 years.

It was good to compare notes and talk things through as he is now embarking on the same Stem Cell Transplant journey as I did 3-4 years ago........I kept thinking “I hope that his journey is not as ‘interesting’ as my one”

Have a great day.

Hello one and all,

 How do I begin, to understand what it feels like to get mixed up.

Last night at about 2am I woke up with a very raspy breathe and pain in my chest, so have rung the hospital and was told to get to A&E.

So off to A&E and for an echocardiogram which came out normal and blood tests that are clear. Spoke to a doctor about it and he said that I appeared to be stressed to much, as even though I'm drinking 3+ litres a day of fluids I am dehydrated, so its going to be a lot more fruit and veg and to eat a litttle and often, more hot drinks, no alcohol, smothies (not a fan) and eat chocolate and things like that high in protein!

I also have to avoid things that get me annoyed. To me that means ignore the news, no tv not that I watched much, stop being competetive. How do you tell a 65 year old to turn off?

Sorry for the ramble.

Any other ideas are welcome.

Ah Peter, this is not great and indeed can be very confusing but a good ramble is ok and can help you unpack that rucksack of stuff you are caring around.

The body is such a complicated machine and stress indeed can have such a debilitating effect on your wellbeing even although you may not feel stressed.

At our Heamatology meeting yesterday I was talking with two people getting ready to go into Stem Cell Transplant. The stress they were experiencing was so tangible and combined with still going through treatment to get them in a position of being able to have the SCT was massive.

I did use the analogy of this invisible rucksack on their backs and encouraged them to empty it on the floor from time to time and only pick up the stuff that had to be carried around....... it was an interesting conversation with regards to what some of the issues were including fear of post SCT infections, of GvHD, isolation, the future........ and that was before they had signed to forms to start the process. It was interesting that a lot of the issues were those out with their control so we focused on dealing with the battle between the ears.

A normal functioning brain of someone living a healthy lifestyle with no real stress or illness uses 20% of our daily energy (protein) intake...... add stress -, this goes up to 40%......add a cancer journey....... this goes up to 70+%........ but even if this is true I did not feel like I was mentally fatigued..... but I must have been a lot of the time but my analytical mind was able to pigeonhole stuff including putting a few things up on the top shelf so I could not see them............ now I am rambling.

You are doing long walks but it looks like your body is having a pity me party - why can this be? 

I have to say with hindsight, looking back at my lifestyle that was not that bad. But I did learn to chill, sit on 'my' chair and take off the rucksack and put it behind the chair, I sit with a fiction book and let the mind switch off and go places that don't include Brexit, Indy2, who will be our next PM...... I will sit and play my guitar...... just stuff that does not include cancer.

Mind you during my second SCT the Rugby World Cup was on and my stress levels were through the roof when Scotland lost to Australia.

A medical friend of ours encouraged us early on, just before (and during both SCTs) to try doing a wall of ‘post-it positivity’.....it could be on the fringe, a mirror, a large sheet of paper, the back of the toilet door (yes, someone did actually do it) just anywhere flat.

All the family were involved.

We got a pack of yellow, pink and green post-its and a pen.

The yellow is for the negative parts of the journey. The pink is for all the positives that surround our lives during the journey and the green is a prize or a treat.

Put all the rubbish stuff on to the yellow post-it’s, you can use as many as you want and line them down the left hand side. For each yellow post-it make up TWO pink positive post-its and put them to the right of each yellow and if you can put two pinks you also put a green identifying a treat or prize........why a treat or prize? Why not, you are worth it.

I t was an interesting activity that got all the family involved....including the granddaughters.

I was on a high protein diet before and after my SCTs......... and was grazing mainly due to my inability to eat or even want to eat following my second SCT. I found food boring and did not see the point as there was no enjoyment but it was important to keep the protein levels up so the grazing did help - mindless eating on stuff that I would not have normally had.

Take care my friend.