Spring has sprung- hurrah!! Lovely day in the sun, picnic with friends and family .....lush! I am very tired but needed to share an update as has been a while:)
Firstly - am fully alive and kicking, good start a??
So - Brentuximab number 3 occured 3 days ago...and, well it continues to be pretty much a wonder drug for me! I cannot believe how blessed I am to have been able to have access to this drug just when I really needed it.
In summary: my symptoms - FYI, all over itching necessitating daily anti histamines plus frequent night sweats and of course increasing swelling to my right chest - ALL GONE!!! (within first cycle)
Side effect wise this is a total walk in the park compared to the other chemos I have had...yes I am tired, but as I only have fun stuff on my schedule that is not a problem! I can sleep in or nap when I need. The pain was only cycle 1, as was nausea. My hair is fully intact and it will stay like that!!! I have had a slight reduction in appetite (flippin A!!) but nothing dramatic....
All in all, I bloody love you brentuximab!!
Sooooo - scan next week will reveal what the score is inside, I am sure there has been a significant reduction. The treatment will continue to a maximum of 16 cycles, it will stop if the lymphoma should grow (not going to happen) or i get some proper dodgey side effects.
In other news I went to the Ashram for a few days this week for a bit of quiet time...it did the trick I think...came back all floaty and calm :) It really is such an inspirational place - I hope to get there every month. I spent a long time preparing the earth and planting strawberries so I am keen to get back to taste those at least! Really wanted to see a hare but didnt,,,did see a badger on my up there who ran in front of me for yonks. But i really need to see a hare they are like properly magic or some shit! And hey, we all need magic in our lives!
Big party coming up soon, wedding and birthday extravaganza!! Won't say too much apart from it's going to be ACE!!! and we can't wait!
Will write more when I have more energy :)
Peace out all you beautiful people! Enjoy the sunshine, enjoy your friends, family, surroundings, self.....just enjoy life!! I am not being cheesey! Do it!
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Saturday 24 March 2012
Tuesday 6 March 2012
I can't believe it IS chemo! Brentuximab number 2
So OMG day 5 after ‘chemolite’ which I shall now have to name ‘I can’t believe it IS chemo’…..apart from having the most satisfyingly deep afternoon naps ever I feel pretty much normal, no side effects at all! Honestly wouldn’t think I had had chemo (hope I have and they haven’t just sold my expensive drug on the black market and given me saline or summink) No, seriously I think it’s a combination of factors, the first blast probably delivered the most profound effect and definitely in terms of pain in makes sense that a large slowish growing tumour mass quickly melting away and letting the normal tissues reclaim their normal position would cause some pain and now displacement is not so dramatic. Also have been having acupuncture every week which I am a long term fan of, plus some interesting Chinese herb concoction, so that will have helped with side effects. And basically it is another thumbs up for Brentuximab my new best friend. Oh not forgetting my wonderful other best mate my portacath! Still loving it, has finally stopped being sore so I am ready for streetdance this week (phew!) Used it on Thursday, was a bit tender accessing but it really just feels how you would expect it to feel!
It was a minor drama getting treatment last week because they didn’t actually know I was coming….I mean I was all like la la la ….Brentuximab every 3 weeks so obviously just rock up to chemoland but oops I wasn’t in the book! EEEK! I have to admit, even though I am ridiculously laid back most of the time I was close to tears with the thought of treatment being delayed as it has worked sooo well! Anyway they took me thru got some bloods from me port and bleeped the consultant who btw has to be on site for the drug to be given, if not him then another versed with this drug that has never been given in this hospital….oh excellent he’s not even here today! Anyway…..the fabbo staff were on the case and they appeared to sweet talk a passing consultant to take responsibility for my potential fatal reaction to the drug, told me to return in 3 hours and bob’s your uncle Brentuximab occurred J Meanwhile Dad and I mooched into town where I took back some shiney rainbow hair accessories, bought yum lunch with refund and generally had nice day! And everyone made sure I was deffo in the diary for 3 weeks time!
Friday night we went to an actual Salsa party with a live band, that was pretty cool if somewhat massively scarey! (the skill we witnessed, un-believable!!) Thank God I wasn’t asked to dance by someone I wasn’t related to or married to! My brother was, haha! point and laugh! actually he held it together and managed to look cool J Still loving Salsa and generally excited about all things fun! I do wish that I had realised how much great stuff there is to do in life that just takes saying yes and not making excuses or being self concious, life is wasted on the youth alright! Unfortunately similar can be said for the able bodied who find themselves too 'busy' for fun, hindsight's a wonderful thing and all that. I know I am lucky to not work and therefore have the time to follow whatever pursuits take my fancy but it is also largely a change of attitude, it's so easy to let the weeks pass and put things off and when you realise that you, or anyone for that matter may not have all the time in the world, it makes you grab life by the balls a bit more. Same with being stressed, grumpy etc, don't bother! Life's too short! Do Salsa!
‘Wedding’ and birthday plans are coming on well! Have decided that I will not be calling this my 40th minus one, cos actually have decided that things are going so well I am going to live after all! Yep that’s right, I totally plan to see 40, at least – I can feel it in my water! Have been having some deep and meaningful discussions mostly with myself and my conclusion is that I think I may have been given a second chance, just gotta work out how to save the world now! Or maybe it’s just that my dog needs me!
Well that's me and Tilly (going to let her sleep on my feet tonite) signing out.
Love, health and happiness to all :)
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