brentuximab and other fun..

Ok so there’s quite a lot I could yap on  about today so I will give you an outline in the form of titles so that you can pick and choose what you would like an update on….I started this entry sat in the canteen at the hospital waiting for my gold plated drug to be drawn up so I had some time on my hands.

• Brentuximab
• More Ashram
• Our Kiwi lodger
• The Bestest Party ever J

Brentuximab

Am now on my my 4^th cycle, I talked last time about my scan result that shows no change since the last CT. I have just caught up with my main man Dr T who in his serious doctor mode informed me that if there was no change on the next scan they would then consider whether to continue treatment, er exsqueeze me? WTF? May I refer you back to the studies and / or original plan that is to continue in the absence of disease progression or really dodgey side effects?! I have become quite attached to this living lark so am clearly rather keen to continue treatment for the full 16 cycles if it’s keeping the hodge at bay. Anyway I didn’t say anything cos although I do love Mr T a lot  he does see a huge number of patients every day and I suspect he doesn’t always remember ever word he says to all of them. Anyway I suggested a PET scan might be useful to see how much of the ‘mass’ is active and / or scar tissue, so will probably have that after another 2 cycles…….

Brentuximab numero 4 went smoothly as always, I was on my own and the lovely nurse let me have a bed so I had a righteous snooze, lush J It is now 3 days since treatment and apart from being tired and having gripey guts all is well.. I have a small amount of hair loss – doh ! That has been occurring for a couple of weeks – BUT it is minimal and I seem to have been blessed with double hair since it grew back to compensate!

More Ashram \

Just before the last treatment I went up to Wales for a few days, life has been pretty hectic and it was just the tonic! I love it, it is like coming home, cheesey but true! Although there was no actual course on we were still up early to chant and meditate which was just yummy! Saw some old friends, met some new ones it was all good.

I spent some time in the garden as part of my karma yoga preparing the earth then planting strawberries, it was extremely satisfying – I was put right off gardening when we had to manage an acre in NZ – but a raised bed is about my size! Part of the point of the karma yoga is to be acting right in the moment with no attatchment to the result or reward or any thought beyond exactly what you are doing right now. It takes a while to adjust your mind and then becomes very meditative.

Our Kiwi lodger

2 weeks is a long time to have any one in your space, I mean however much you love someone they are bound to be annoying at some point aren’t they? And in a fairly small flat (where yes my kiwi chum your larder is twice the size of my entire kitchen) said visitor is obviously going to get in the way a bit, however well meaning they are, right?? Wrong!  She has been an absolute joy to have around J this woman exudes love and joy (amongst other things) from every pore! I even forgive her the 3kgs I piled back on whilst she was here (my carb free kitchen became a 24 hour toast production zone!) and I suppose it wasn’t her fault that my little bro gave me 32 malteser bunnies for my birthday…..

Well we had the bestest time and I was rather grateful that we had an epic last minute dash to the coach (which she only just caught) so that a teary and emotional goodbye was cut short by an OMG! Run!!!!  The 2 weeks went way too fast (for me anyway) and there’s so much more I would have liked to have shown her but the awesomeness of just hanging out was priceless in itself. And I do pray that I get to see her again and her lovely boys and imminent sprog J

The bestest party ever!!

My husband and I have had a somewhat challenging few years and felt that having been through so much plus staring my alleged death in the face that renewing our wedding vows would be a plan. You know how everyone gets together at weddings and funerals? Well I didn’t want everyone to get together after my demise actually, because why on earth would I want to miss the party?? We didn’t want t o wait til our anniversary cos basically we thought I would be pushing up the daisies by then soooo thus wedding / birthday party plans were born!!

We had the same venue as first time around, a cute one turret castle on the edge of dartmoor, but this time very personal, informal, spiritual and all round utterly splendid. We had a lovely vicar (a friend of my dad’s) take the service and had dad and bros speak some beautiful words. My lovely friend sang ‘here comes the sun’ by the beatles and within one line the water works were well and truly in full

flow! We read some personal promises to each other, my son did a reading and handed us rings then we ate cake and drank various fizzy!

Here was supposed to be a nice photo but cos my computer is f@#**d we have nothing just yet...

Then in the evening we partied hard, thanks to a collaboration of my besty mates for top sarnies, my bros for DJing, Dakar Audio Club, my awesome niece on guitar and vocals rocking ‘your song’, my valley sista for the fab décor, and all the fab family and friends who rocked the party with us on Saturday! It was definitely all over too soon!

I am one lucky lady

Peace out xxxxxxxxxxxxxxxxxxxxxxx

Brentuximab (adcetris) - I'm stable...

3 cycles brentuximab down......how many to go? who knows..maximum 16...
Side effects remain minimal, I am properly knackered I have to admit, but I am prone to burning the candle at both ends so, possibly don't help myself as much as I could! Memo to me- go to bed earlier!!


Had CT scan results today, 3 lots of brentuximab and I have stable disease......this equals just 90 minutes of the actual drug and it has halted the lymphoma! happy days! I feel really well and I know people aren't lying when they say I look well too! Ha ha FYI, saying you look 'really well' blatantly means , you look fat! Someone said to me the other day I looked 'healthy' which for some reason didn't sound as fat as 'well' does, so that was cool! Of course I would have preferred the scan to say I was all clear but, well I am grateful for feeling so good. It was unfortunate that the Dr delivering my news had way less expertise on my disease than we have....very frustrating, but my main man will be back next week so can have a proper chat.


Yesterday was my birthday, we had a big family dinner and then back to ours for remote control sumo battles and bingo!! Get in!! was tons of fun! Thanks so much for my ACE presents :) good call on all the board games! My son appears to have hidden skills as a bingo hall caller...cool. my little brother gave me a box of 32 malteser bunnies OMFG!!


My lovely mate from NZ has been here nearly a week and quite frankly I don't know how I will deal with her not being here, she is so much part of the furniture,,,,in a  good way!
Wedding and party on Saturday- will post photos..


Gotta go bed!
xxx