portacath love

OMG am 5 page views away from 5000 - that means nothing to anyone apart from me and my own chufty badge!! so yeah go me!!
BTW I am putting the word Brentuximab in when I can in the hope that when others are  searching for ''brentuximab'' experience they will  get links to my blog on their search .. there really is bugga all personal experience stuff out there! Just because its all so new.....
Anyhoo, my news is I have portacath in and I am happy!! It took maybe an hour of fantastic skilled care by a great team! And I have already bonded with it, its tiny , its cute, its my mate- end of!

Brentuximab......success continues yay!!

It's 11 days since I had the first brentuximab treatment and oh my actual god it is sooooo totally working!! The swelling in my chest has reduced at least 70-80% I have literally felt it melt away on a daily basis! A - mazing! I am spun out because 2 solid weeks of ESHAP did zero, zilch, nada! and one half hour big B and whoah there!! complete remission here I come! So, as I said before it has hurt as it's melting away but Helloooo! worth it obviously. I have felt pretty whacked as well but i can still drag my self out of bed for my various activities....Yes that's right I am too ill to go to school but not to ill to go out and play!!!! alright!!?

It's a wierd feeling because despite this mutant swelling I had and in hindsight general oedema chest upwards I did not 'feel' like I was at all affected by the Lymphoma and now to witness such a dramatic effect so rapidly has given me quite a lot of food for thought....most importantly the strong possibility I could be around quite a bit longer than I thought...what am I going to do? (No I don't mean the W word- I mean life experiences and that!!) I can actually look at the year on my calender and start marking things in more than a few months ahead! wow! I do also have to consider bone marrow transplant, but that's a whole other story....This is possibly a second chance, fantastic! I feel like I should 'do' something that makes a difference..........suggestions on a postcard please! It can't all be puppies and rainbows can it?? Or can it...........

On the down side a friend I have been in contact with online who was also waiting for a decision on the brentuximab has been turned down, how bad is that! I am so peed off for her. I can't believe that things so important really can come down to a postcode lottery. I think she is going to try and kick up a stink, so lots of positivity her way :)

I had some acupuncture yesterday as general support for the treatment and side effects and immune system boost, am going tomorrow too. I also have some herbs to brew and drink twice a day - all good stuff :) Oh and had salsa therapy last night! (omg actually danced with Jeff Goldblum!! well a brummie non film star version anyway) was so awesome I love it, it's so much fun! Now I have to add 'dance in columbia' to my bucket list, haha! Undecided on the shoe colour tho..

Well, am supposed to run today so I have painted my nails, done a face mask, played with the dog, tidied up, been on facebook, writing my blog, listened to some salsa music............er what's missing? oh yeah my run, my 'oh yeah I'm in training for the GWR' run....ooops!

Peace out

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Day 4 post Brentuximab

Ok my dog is properly weird, she just spent the last 5 minutes burrowing on and under my duvet after what I can only assume was some imagined rabbit or bone or something, then after exhausting herself and lying on her back with her legs in the air looking particularly daft she crawled under the covers and curled up by my feet and fell asleep, normal dog stuff.

So it’s day four after treatment and I am in pain!! But before you feel sorry for me I have good feeling that this is productive pain, ie tumour destruction!! Yeah!! My rationale for this theory is that the pain is located in my right chest where the tumour is (well done Sherlock) it is also unlike any other pain I have had, its sharp, dragging, intermittent. Remember my purple blobs on jet skis, well I didn’t realize they had extra ammo….yep its like at the end of a level on an old school computer game where you have to beat the boss with all the weapons and energy you have accumulated….get the picture??  Anyway everytime I get a twinge then it’s a bit of the ‘boss’ baddy (cancer) getting totally owned by my troops! And the pain is a bit of it crumbling away. I don’t say this for your amusement this shit is real (might not mention on my next madness assessment though a?? “Any unusual thoughts or delusions this week Simian” oh no? me? No….

Also I may be tripping (obviously) but I think the swelling in my chest has gone down! Yes, yes and double yes!! This will mean I will back to equal chestly proportions soon hurrah J

Felt battered on Friday thru Sunday but think that maybe, just maybe the 3 runs, 2 badminton games, salsa and street dance may have left some lightly strained muscles…so either I man up and shut up or god forbid take it easy-eek.

Also some nausea and appetite reduction (bonus) this shouldn’t be a bonus but for someone who has put on a stone in the last  few months whilst exercising more and eating less then less appetite makes life easier. We have pretty much overhauled our diet anyway to minimal processed foods, loads fresh veg and fruit ,pulses etc trying to make what we eat really count…although am looking forward to an en masse bundle to prezzo with tesco vouchers soon for a top feed pretty much free J

Had a good day bit or a slump mid afternoon so lay down for some yoga nidra –lush! And managed a 3 mile run without my training buddy cos shes in spain, still at least I could take Tilly, who did want to turn back after a mile and was puliing me back on the way there and then pretty much pulled me home the other way! Looking forward to running with my original training partner from way way back in the day this week! Must remind her to bring trainers! Did Salsa tonight and am actually proper excited about next time it’s getting really fun,,,gotta get meself some salsa shoes soon,,,I ‘m thinking silver holographic…I can double then up for wedding shoes you see!

So basically the treatment IS working! It will CONTINUE to work  and I am super duper positive!

Scan this Sunday-so my troops better keep blasting that big boss!!

Peace out xxxxxxxx

Brentuximab cycle one

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

Brentuximab tomorrow!!

It's minus 2 degrees outside and we are sposed to be doing a 5 mile run this am....change of plan- gingerbread lattes at 9am then run later when temperatures are above freezing!

Went to hospital yesterday for pre treatment bloods and consent, yes it's finally happening! i start treatment tomorrow.........blood results good my iron level is fab despite giving up meat, all those lentils and chickpeas are doing the trick :) saying I have 'given up' meat sounds very virtuous doesn't it? In fact it's very easy for me not to eat meat, I still eat fish and would find that hard to not eat but give it time....I am managing about a 90% wholesome lifestyle at the moment just need to work on that other 10%....

What I failed to acknowledge til this last week is that Brentuximab is still chemo but a combination of an antibody and chemo. The chemo basically piggybacks on the antibody to get to the naughty cancer cells directly and therefore doesn't have as much systemic toxicity as chemo alone... How I see it is the antibody is like a mini jet ski and the chemo is a purple blob creature with a determined face riding the jetski all the way to the bad cells and getting them, there will be a whole army of them speeding thru my body to do battle....yeah!! The thought of chemo again does give me a little shudder so the above visualisation helps combat that!! The other good thing is this is only one drug, the other regimes have been 4 drugs at once so no wonder I was battered!

Whilst discussing side effects with the consultant I mentioned that I had just started training for a half marathon...........his response was, and I quote; "This treatment is going to pretty much fuck up your training....." he then went onto say that he often counsels patients regarding fatigue etc and that when starting chemo it is not the time to start training for a marathon and he has never had someone reply well I have already started... I do like him! He is the quintisencial well spoken, clever sounding consultant and he comes out with some blinders! Anyway I compromised by saying I won't actually register for the half marathon until I have had the first treatment so I know how I will feel.....I didn't mention the street dance class I have tomorrow evening!

Stay warm and happy :)

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