Highlander and John R..and all those on the DLBCL journey!

Unknown said:

I know that with you and John by my side, in particular, I can't go wrong.  I know there are others on this page who have been amazing too but you two, I call you the Dynamic Duo.  You will have to select which one of you is Batman and which one is Robin.   They are both equally as important as each other and will always be an invincible duo.  I don;t know if you ever saw the episode with Del Boy and Rodney when they were dressed as Batman and Robin.  If you haven't seen it, watch it.   It's hilarious.   

That the best quote this year

Love your post Trooper56! Thank you, smiling now!

I had COVID as well and I hope that was worse for me than my chemo will be. I will know soon- the 15th is Day 1 for my R-CHOP treatment. 

Hi KotC, make sure you're well hydrated.  It feels strange but not too bad, the piriton infusion felt like a double gin and tonic to be honest. You will feel tired after you come off the steroids after a couple of days. Don't plan too much, listen to Yr body, rest up. The rounds of chemotherapy get progressively more tiring I found. 

• Keep a diary, write down your meds, and do what the medics tell you re. Diet and fluids, antisickness drugs (insist on the best one, Odansitron). Ask questions, knowledge alleviates anxiety. 

First ones usually a breeze. Worst effect I got was mouth sores. I think it was Doxirubicin...but aid need to check which drug. BUT you CAN stop this occurring. How, freeze your mouth by sipping on flavoured ice crystals AS you are having the infusion. How does this work? Well the blood vessels in your mouth and tongue are so cold the rat poison being pumped into your veins can't get through! IT WORKS!

Take a laptop, headphones, phone charger books magazines etc etc. Day one is extended due to the slower infusion rate. They need to watch for allergic reactions (rare, but potentially nasty)

Take a picnic blanket...NO! You are not getting a picnic!! It's for putting underneath you. Why? Because the adjustable bed chair is cover with grade 5 (highly wear resistant) vinyl ( I learned thiss a mate of mine procures hospital furniture!!) And if you don't...you'll end up with a sweaty arse!

SMILE! Why? Because it confuses everyone else and makes you feel better. In fact SMILE everyday, it pisses of your 'rouge cells' and confuses them.

In fact (this will sound extremely odd. But it's a very powerful psychological tool) TALK to your rouge cells...the ones that everyone calls cancer. They are in fact YOUR OWN CELLS...but they lost the plot and are partying a bit to much.

I wont explain here it will take too long. But it's called a Five Step Reframe in psychology/Hypnosis. So just have a chat with them. First say thankyou (I'm not mad btw, this is a very powerful hypnotic tool) say hello and thank you for everything you've done...and here's a thing, it's now time to change. You did a great job and I'd be really happy if you'd leave now. You've done your work.

Next you literally talk to all the 'other parts of your body (you are actually communicating with your subconscious here btw) and you say with respect (you always need MASSIVE rapport, in hypnosis) I'd like you to help me find a way with their permission...to get Rid of the cells that have been having a blast...its time they now ended their party.

I'd like you all to come up with a positive way to NOW make that happen....

DO this and the most powerful part of YOU...your subconscious mind will begin to active a plan to help you. If you need some research about this Google Milton Ericsson and check out John Grinder and Neuro Linguistic Programming.  I've spent fifty years studying hypnotherapy and it's incredibly powerful.

Anyway. Hope you don't think I'm a nut job, talking nonsense. I'm actually a genius. 

Oh three weeks or so post chemo...you will lose your hair...mine was 20 days exactly ...so I shaved it all off! I was told it can grow back differently wavey or straight and can even change colour!! 

I told my oncologist...If it comes back ginger, to STOP all treatment!

Thanks Julia,

I already have a notebook just for questions for my medical team, with dates. And I have been emailing cancer nurses here with questions and attending local group meetups as able to. I have planned nothing at all, other than to keep up my medication and mindfulness practice, walkikng more, and adding in yoga or tai chi (DVDs) on the weekends. I have two large water bottles that I have with me (one in each major room) already, so good there. And a shopping list of "chemo" foods and supplies that I will get before the day. Also packing a chemo go bag the day before I go to each treatment. So I don't forget anything. I am organized and a planner, and will edit my list after I go and know more what I will need and not need to take with me on the chemo days. Luckily I live very close to shops and pharmacies in my town. 

Sounds like you're well informed. I found gentle walks and yoga very helpful, at some points of the treatment even just emptying the dishwasher was an achievement.  Various degrees of fatigue is the norm. Watch your skin in the sunshine, I couldn't go out in the sun and found chemo gave me light sensitivity in my eyes and skin.... so I used to have fun with wigs, caps, sunglasses, youve got to have a laugh, pretend to be a spy/singer. My friends had a wig party. 

Stay focused on the positives. 

Thanks Julia67 (btw I was also born in 67!) Yes, I try to be as informed as possible. 
I heard about sun sensitivity. I already am pretty intolerant of sun and heat as it is.

Lately I have been more diligent in applying sunblock when I am out and it's sunny or warm (50 SPF) and I did get lip balm with SPF of 30.

I have hats that I can wear when outside too and one of them is fedora like and has SPF of 50. Other than that, I have doo-rag sort of head coverings (cloth) that are fun - they're pirate themed that I wear on occasion already.

My eyes are light blue and sensitive, so they always need protection from the giant burning orb in the sky! 

I do have good sunglasses too - I need them regularly as I live in the sunny Southeast of Ireland. They are prescription glasses. 

Sounds like your friends' wig party was a good time!