Day one in the Big Brentuximab household…….
Currently sat in the canteen downing hot chocolate, plus as much water as I can get in within the next hour to hydrate my weedy veins. My lovely nurse tried twice to put the drip in, and then the matron dude said “does she need a PICC” line, I flicked him the V’s which may have been slightly inappropriate in the the middle of day case but it has to be said this is the same man who said I may have to shave my “minge” for IV access sooooo in the inappropriateness scale well, you be the judge J but as my middle name is inappropriate its all good……
The prescription that they have had to develop especially for me (such a groundbreaker) has a whole section to mark my insanity rating! Including my emotional lability (flippin’ hard to assess at the best of times I’m an aries after all!)
I have come on my own today despite plenty of offers of company, it’s just I knew it would be boring. I had to be here at 930am so the consultant could see me literally say are you feeling ok, have you had a change of heart (reassuring) and then he tells pharmacy to go ahead and then I wait for a couple of hours for the drug to be dispensed…thus my current loitering in the canteen. Oh yeah my point was that he told me this morning I should have someone with me in case I have a reaction (unacceptable) or feel too sick to drive home (doubt it – going street dance tonight innit!!) So I called hubby and he will walk the dog then get bus up to meet me. I feel like one of those French and Saunders characters – the big countrified farm types muttering “lots of fuss and nonsense” leg shot off “fuss and nonsense….”
It’s a coping mechanism, I want fuss on my terms – unsolicited fuss makes me feel at best a charity case and at worst already dead….this is really really hard to explain and I am not doing a good job but I need to try and explain even if people can’t fully understand. Because I definitely want a fuss, don’t get me wrong!!! I would feel most unloved and neglected without some fuss! This is unchartered ground for me, and everyone I know. I mean I’m supposed to be dead and here I am I’m basically fine. I have to admit, being given 6 months to live pretty much gives one carte blanche to do what you want….thus the F. it I’m going to die anyway approach, I have been very forgiving to myself and people around me have let me get away with murder (not literally) but one can't go on like that indefinately! I mean with a finite time on my life I did enjoy the all about me aspect but actually if I live another 6months, year...more I cannot keep getting away with it...or can I ? I don't know, am waffling.
Anyway - it's now tomorrow, the day after Brentuximab so I can fill y'all in on how it went. Well, once the actual line was in the drip itself was no biggy, no pain, no wierdness, no reaction at all - I felt totally fine, excellent. The worst part of the day was being told in no uncertain terms that they were really not happy to continue this treatment until I had good IV access, their suggestion a PICC.....Nooooooooo!!!! I was in such a strop, it might sound daft but if I had known that this was the case I may not have even signed up for this, the PICC would rule out badminton, street dance, zumba, most yoga and general flinging myself about! This shit keeps me sane!! Plus the bloomin' tubes flopping around all over the shop, oh and no baths or swimming....Poos th that! Anyway i did have a moment of panic, like WTF am I doing back here!? I've been quite happily bimbling on feeling good and enjoying life then boom, back in the land of illness and debilitation! Anyhoooooooo fortunately my husband was there and was an amazing advocate, having had actual experience of such things (I was only a nurse for 5 minutes really then spent the next 10 years telling women to breathe) and he suggested I get a portacath, so I am, on the 23rd February. A portacath is a disc thingy attatched to a tube - so the disc is placed under the skin on the chest and then the tube feeds in to a big vein - yum. Then when I need drugs or blood taken they access the port. Less infection, more long lasting, possibly more discreet but most importantly I can still run, skip and play and generally arse about for as long as possible!!
Back to the 'chemo lite' (brentuximab) so far so good! I got back from hospital at around two thirty and went for a lie down and was out like a light for nearly 3 hours, but when I woke up I decided I felt ok to go street dance, and thank goodness I did 'cos we just started a new routine!! Had a broken nights sleep but not too bad, that's probably the steroids they gave me during the infusion. Today I played badminton (got thrashed, clearly the effect of chemo hem hem) and now its just before 8pm and I am in bed, pretty tired. I have an ache in my chest where the tumour is so I am thinking that this pain is my troops doing their work and blasting said tumour awaaaaaaaaaay! Did some chanting tonight and meditating thinking loving thoughts to my chest region :)
So life is good, my doggy is curled up on the bed beside me (she so thinks she is a cat), husband's on his way home with hot chocolate.......still hoping to run tomorrow and it's only a short one so fingers crossed...
Lots of love and light
Sim xxxxxxxxx
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