Recently diagnosed

But lurking with a beer watching a poor game of football ha ha

superb finish :)

And anoTher

Well the big day arrived and my amazing hubby did us all proud. Blenheim Super Sprint Triathlon, check out the results online if you don't believe me but he came 8th out of 413 competitors, so so proud of him, the hard work paid off!

John, have a beer or two for me and enjoy.

Aw Phil loving the gorgeous puppies.

I have had the most wonderful day, just arrive home completely exhausted now, don't think I'll be moving far tomorrow.

love Jakki xx

Jakki, 

give Gav a massive 'well done!' From me, I think you both deserve a ready tomorrow! 

Hugs xxx

Hi friends

indef have lost track with all comments, but congrats to jakki's husband truly brilliant! Very commendable. Lovely place too!  ( I pronounce my name Elaine-a. Think russian gymnasts haha ). Thank you for asking. I spell it Elena. 

Tom hope your throat is not tooooooooooo horren today and you can get something down you....

welcome to the world gorgeous pups! 

Daisy I am thinking of you when you meet with consultant this week.

anyone else been on a high when they have their good week? I am so positive because I feel well, which I guess helps as back to the grindstone tomorrow for 1b. Shudder. 

Mark I hope you are ok and manage to get somewhere with The NHS? It takes up so much energy doesn't it. It is a battle. 

I found a lovely product in holland and Barrett... Dr Organic range, the olive oil body lotion. Beautiful and lovely subtle scent. Sinks in, non greasy, just beautiful. 

in the spirit of wayyyyyyyyyyyy TMI, I was treated to some piles over the weekend- is this something I need to ring nurse about, I see her tomorrow for 1b so it can prob wait til then? Eugh!!,!, sorry! 

Over and out for now. Wish the sun was here today, not liking the miserable grey drizzle. Xx 

Urgh the dreaded piles, I've had em too during chemo but as I suffer with them a little anyway (two bigish babies lol) I just used anusol and increased my fibre! Hope yours settle soon they are miserable!

Yep I tend to be on a high high my good week too and try to fit in as much as possible, in fact one friend said 'you won't want to go back to work!' REALLY? Wasn't sure how to respond just smiled and told her how much I loved my job and that I couldn't wait to get back to work. My instinct was to say in my most sarcastic tone, ' Gosh no, I wish this cancer would last forever!!!' Bless people say the strangest things.

Good luck with 1b and get the bran in :-) 

love Jakki xx

Yes the funny (Not) things people say ... One friend said, as I was weeping about hair loss to come, "But you are NEVER happy with your hair anyway!"

All my friends seemed to think I'd be more worried about loosing my hair than dieing! seriously, last of my worries, - and I guess just luck I managed somehow to keep most of my hair... = no idea how I've done so!

Elena - I found during chemo; when I was high; I was high!; could just bash through housework, running about town, etc, just like the 'old me'- but would often crash the next day, from over-exerting myself!; sometimes I'd get a two, or three day high; and just be so bouncy, and up (it probably shows here in the backlog, with  my eratic up/down-ness, esp in terms of psychology; which more or less tired into physical well-being, or not) - I loved the up times, as  I pretty-much felt mlike myself; and the down bits; made me feel so bad; mainly because I could tell, even as they were happening, how badly they were affecting William; in some ways I think my treatments been more of a drag and bad thing for him, than it has for me... if that makes sense, I guess everyones 'Significent other', gets a bashing, as we go up and down, physically and mentally over the course of treatment.... - mind, part of my 'high' or up days, may be due to the hydrocortisone steroids I'm taking too, for the  now re-diagnosed as secondary Addison's disease...  

"holland and Barrett",  "Dr Organic range, olive oil body lotion" damnit!; I might be walking past that shop later today! duely noted!

As regards the piles; definately mention it to the nurse, or your consultant, or whoever you get to see before the infusion; if I had stuff like that, not too overly urgent (i.E., not a temp), then I'd leave it until my next clinic, if I was near  an infusion. - There isn't many parts of my body my consultant/doctor hasn't seen now, with various 'niggly things';, that popped up, between infusions, which, I, under strict instructions to be good, always presented at clinic... irrelivent of whether or not one might think them embarasing - I don't think I get embarasment anymore, spending this much time in hospitals, one  looses any inhibitions, quite quickly! - Mind, most amusing yet, was my Dr, after ... examining me, one time, sturnly telling me I needed to wear looser fitting underwear and trousers! (OK, well, I did put weight on over the course of chemo, but... oops.,.)

yes; its just the ... effort of feeling this tired, brain foggy, etc., and then having to use my energy I do have, on chasing up, re-booking appointments, etc., etc., is so* annoying!; have to phone today, as we got a cancelation on my opthmology clinic appointment, and they've rescheduled it for 8 am; we can't  physically get to the hospital that early, as there are no buses! - still awaiting a phonecall from hospital; oughta be finally getting an appointment for the follow-up clinick/consultation, after chemo finishing, which they forgot I needed until I asked why such an appointment didn't exist: again; why they keep the 'standard centre protocol' for a given place, secret; I only guessed such a thing existed; had I a written list, of the protocol, here, I'd at least know when stuff had been overlooked... very odd...



yea!; well done Jakki's husband!; and blimey, not just doing it, sounds like a good time/finishing position too! - its an achivement, here, if I can make it as far as Lush at walking pace, right now still!

Talking of which; anyone any idea how long it is before the chemo drugs really* leave one's system?; just wondering as one Dr the other day (the radiologist), said somethign that really didn't sound right, to me, - indicating they're gone, in hours, or days; well, I'm still getting 'sensations' inside my body, I associate with the 'drugs doing their bisuness', and now, I'm err, 18 days post the final infusion....

Did a bit of research last night; the perlipheral neuropathy I still have left, from the vinblastin, affects motor nerves, as well as sensory ones; so that explains at least some of my cluttsy-ness, and lack of coordination with my hands... hey ho... still hoping it may reduce more, over time; functionally there isn't much I can't do; typing, plalying guitar, chopping/cooking, fastening/unfastening tiny little clasps on jewlery, etc, but, well, for me; things just 'feel wrong', which is... just horrible- somtimes sets me off crying.

 Tom, hope your managing to eat something, or at least get some nutrient drinks that ain't too horrible tasting down, and the fatigue isn't too terible; how many zaps left now? =- still undecided if I should go for the zapping or not... so can't have this extra bracchial plexus neuropathy, but, the 5% to 7% increased 3- year average survival rate,  (think I got the stats right), from having Rt with the chemo, is... kinda tempting... and, afterall they were a bit unhappy I couldn't be pushed on to complete 6 cycles of the ABVD.... for various reasons... damnit... = trying to disect the limited data on this stuff is a nightmare; I'm having to use statistics from breast cancer patients, to weigh up the risk of bracchial  plexus neuropathy, as its more breast cancer patients, who get rads in the area that looks like it'll catch the 'rays' in my case.... and there's only a few studies, specifically adressing any such side affect stuff, for RT, in lymphoma directly... - plus chemo brain really doesn't help when I start trying to process even basic numbers like percentages...

managed to get a more decent sleep last night; weighed up what I've got to do today, and decided on a 10 MG dose of hydrocortisone to start the day, and, well, so far have filled myself up with coffee and  some scrambled eggs on toast; and carried a whole pile of massive boxes upstairs; all the new bedding, duvet, pilows, etc; now working up the energy to unpack it all, then strip and remake the new bed, with the new duvet, pillows, matress protector, sheets etc... William over before long, to pop out do some shopping, including getting a new curtain rail; which I can have fun, with my neuropathic fingers, trying to fix to the wall! -

talking of fun tasks to do with dodgy fingers/hands; got a new white cane, the other day, as my ancient one was... apparently looking incredibably deschevled, - don't like the new, thinner 'handle' on it, so I've a cunning plan, at some point, to get my leatherwork box out, and make a leather handle cover for it; that'll be a challange, trying to get that milimeter perfect  to fit, and glue accurately in place... Hoping it'll be enough to make the handle end thicker, and heavier; the canes weighed awefully heavy towards the 'floor' end, as its so light for the rest of it, being made of carbon fibre, and it needs more weight at teh top... plus the really thin handle, kinda hurts my hand, having to close it so tightly round the 'grip'....  - not that I think I've sufficient concentration or coordination to do much wondering about, outside, on my own, anymore.... so hoping that all improves too, after some  recovery time, at teh moment, it looks like perminant disability post-cancer treatment is something I'll just have to .... get angry about, or suck up and take... hmm. I'm so bad at the last of those two options, I just know it'll be the first!

Well, must get on, open all these boxes, and sort out the contents, then remarke the bed, and .... see how the ell I'm dgoing to dispose of yet more cardboard, and no doubt packing from inside the boxes...



hope everyone is OK, and managing as best we can.... don't think anyone's due in for chemo today, are they? - just you Tom, I guess... with more Zapping.... ; have a manly hug....