49yo - Just diagnosed with Stage 3 DLBCL

Hi Sarah

My first cycle felt like a hangover for the first 10 days (head fuzzy, constantly wiped out) but this time it is much better, and I even drove 80 miles yesterday without any concerns.

As highlander said, speak to your nursing team about the vision as it could indicate something (or not), and just bear in mind that your body is just telling you that it doesn't like being poisoned! 

Someone I know who is also having R-CHOP referred to it as "bleach" in his veins. 

It gets easier, just don't fight it, relax, take some personal time, veg on the sofa, eat nice food and treat yourself to something nice. 

Take care, Paul x

Paul ….. when I was having my first 5 day 120hrs treatment of R-EPOCH (big brother of R-CHOP) my Pharmacist friend appeared at the end of her shift.

She looked at the Chemo bags and said “you know that we call this stuff educated bleach” she went on to say that she had actually made up my chemo bags earlier in the day and saw my name so would come up and see me.

She also said that the nurse team just pump this stuff into your body like it was water…. but downstairs when we handle it in the prep rooms it’s all in an airtight cubic with us doing all the work using special sealed gloves looking through protective glass and a very high-speck air filtration system.

Hi Mike Thehighlander - Oh, I'm well aware how it's handled... my step-son is a GP and sits on the BMA. He's watching my treatment like a hawk, and gives me the full gen on everything that is happening (and making sure that I don't do anything stupid!), and how serious these drugs are. 

Thanks guys, yet again, your support means such a lot. I’ll ring the nursing team tomorrow about the visual probs. It’s more annoying than anything. 

I’ve decided to just chill for the rest of the day instead of forcing myself to carry on like I usually would….I know I’m 50 but in my head I’m 18 and still act like one, I’m always on the go so it’s hard to put the brakes on!

Frozen veggie pizza and some rubbishy telly is on the agenda for tonight.

Thanks again. Hope you’re both ok and feeling well after your weekends including your long drive Paul.

Sarah x

Hi Sarah,

I'm 50 next Sunday, so the long drive was to look at an old 1970 Series IIa Land Rover - I figure that if I have to avoid socialising for (at least) the next 6 months, I should have a nice birthday present to play with. Fingers crossed I get it!

Having something to do is important, but not to the detriment of your health. Play an instrument, learn a language, repair an old Land Rover... but do it at a pleasurable pace

Have a great week!

Paul

Oh a 1970 Series IIa Land Rover sounds great - I hope you get it

Yes I did! Being delivered today

1970 Series 2a, solid as a rock, just needs paint and tarting up (All chassis / structural / mechanical / brakes / electrics been done)

Paint me a happy dawg

Oh well done you - it looks great and ‘many’ hours will be happily focused on this beauty….. to your families annoyance

My dad came from a family line of motor mechanics and worked with some of the great old British brands….. most all gone now. Once he retired he became a classic and vintage car competition judge up in the North East of Scotland where I used to stay…… I broke away from the family’s tradition and went into wood

Have fun

Morning folks

Just thought I’d check in and see how everyone is. Hope you’re all good.  Love the Land Rover Paul, wow, that’s ace. Happy 50th for Sunday, hope you have an amazing day! 

Personally, I’ve been feeling ok, pretty much like my old self again now. No side effects or fatigue so I’m making the most of it. I’m avoiding anywhere crowded as I am a bit concerned that my immune system is compromised but otherwise ok.

I keep tugging at my hair (insane, I know!) but it’s still hanging in! It’ll be 2 weeks on Monday since my first R-chop so I await the inevitable!

My next (2nd) R-chop is scheduled for the 22/7.

Just a bit of advice if you don’t mind, I haven’t had any alcohol since before starting treatment but I’d love a glass (or 2 or more) of wine tonight, I feel ok, all meds have now stopped….do you think it’ll be ok? My nurse says it’s fine….but I’m a worrier! It’s not life or death obviously having a glass of wine but it’s what I used to do on a Friday night and I really miss those Friday nights. 

Anyway, sending love and positivity, have a great weekend folks.

Sarah x

Hi Sarah Sassy1234….tugging at your hair is only natural, let’s see how things go with that one. I had a different treatment so about a week after my first treatment I woke up with my pillow covered and spitting out hair…. I went straight into the shower and shaved the lot off…. one thing less to stress about in my mind.

The alcohol thing is interesting as each clinical team will say different but I ‘always’ followed the advise of my team 

I had my first 5 day/night treatment cycle over new year 2013/14 and the ward staff took in party food and drinks so we could take in the bells as you have to do in the Highlands.

I did ask if it was actually ok for me to have a dram and got the reply “no problem but not something you would do every night”….. so I was sitting having a rather good small Single Malt with my two chemo pumps pumping away beside me as we watched Big Ben hit midnight….. we even had a little ‘Gay Gordon’s’ dance in the corridors….. my 87 year old great-grandmother partner loved every minute of the evening.

A few months later I was talking with a lad I have bought cars from for years, it turns out that this was his grandmother….. she died a week later….. “but Mike she still had a smile on her face that she got to celebrate her last ‘bells’ with a little dance and a sherry”