Recently diagnosed

Well, since it's mostly-there-but-patchy-nonetheless, I might get some sort of weird chestnut/black mixture if my Dad's genes kick in... I'm going to let it grow until it begins to either look normal or weird. Either way, not looking all chemo-ey anymore (Not that I did, I know, but in my head I did) will help me with confidence... and help me to attract a mate ;) LOL sigh.

Yuckmouth is receding, thank the lord. The taste yesterday was engaging my gag reflex :( gross. 

I am going to try a light workout later on this week.

Jakki or NATH (if you haven't left us behind already!): any idea on good insoles for my running shoes? I get really bad shin splints running each charter'd street of London...

+ Good news on the neuts!

MARK. Where are you? I'm worried, too. I hope you're alright, please let us know you're alright - last thing you had a higher than normal temp. Really hope everything is fine.

Phil - you getting back to normal now?

John - Going to hospital tomorrow for the radiotherapy planning session. Think this'll involve getting the mould made. Do you reckon it's likely they'll tat me? There were a LOT of enlarged nodes at the height of the lymphoma (shudders) - I'll be so spotty if they do! 

Hope you all had a restful night's sleep 

Tom

Phil, I seem to need GCSFs every other chemo, my neuts were 0.9 at the last chemo hence the injections this time. I won't have them this one though, you have prompted me to ask for less injection if I need them again though as the pain is worst after four and five. The fatigue is tricky isn't it, do think we are doing ok though, not sure many people would still be DIYing at this stage, keep trucking xx

Tom, I always go to a proper running shop and go on the treadmill for a video assessment, do you do this? If not I would recommend it. Also shin splints can be caused by upping your mileage too quickly, never increase by more than 10% a week. I tend to do most of my training off road as this lessens the impact as you land differently each footfall because of rugged terrain. Do you plan to train for a race? The mud runs are really good fun. I am booked in for a run or dye event in October (you get covered in different coloured paint on the way round, it looks fun. Will then start more serious training as I want to do more triathlons next year, did my first September and had planned to do more this year but have now decided next year will be better. Hope the running goes well, have you done much before? Good luck with the planning session, let us know how you get on. Xx

Hoping Mark is ok

love Jakki xx

Tom, my understanding is you will get a tat as they have to mark you up so that they can set the machine up on the right sport, even though you had a few nodes up so long as the treatment is targeting one site ie chest then you should just get the one. If I was a braver man than I am, I would have had a zipper done where my biopsy scar is as its about 5 to 6 inches long.

Jakki, you going to spend all that money on hair colours then get buckets of dye thrown all over it !!!

Phil hope the diy goes ok, with the fatigue it is best to go with the flow sometimes and have that nap, even though sometimes you can feel worse when you wake up.

Oo, yes, just thinking of the amount saved at the hair salon.....you chaps as well as us ladies! 

Jakki, the running shops ideas of insole assessment sounds an excellent one, though I don't really run, I have jogged a bit, and always feel a bit concerned about the right footwear, it isn't always what feels comfy, after all. 

Tom, you are getting rid of that chemo well and for good, 'enjoy' being able to say, 'and I've got cancer' when folk look at you askance! Cos it ain't long now till you can only say 'I had cancer'! 

Phil, if you need to rest while doing all that DIY, then do so! There's no shame in it! Hope the cricket can help you rest.....

Mark, getting concerned now, hope nothing too bad is stopping you from posting, missing your typing! 

Daughter has arrived back, she had an early rehearsal in London ( stayed over in a friend's flat, they have a great system) and she's just here for a rest, playing through, and a reheareal this evening, then back to the flat as tomorrow starts even earlier, at the RFH! I promised her macaroni cheese so will have to get off my backside at some point. 

This morning we did our usual stint at getting to know more about code breaking in WW2, plus ensuring the Bombe works ok. 

About return to work, don't forget that cancer is now classed as a disability, covered by the Human Rights Act, ( just so long as the UK is covered by it!) so don't let any employers try to pull a fast one, and ensure by talking it through, that your team are happy for you to go back

Hugs xxx

Me too Jakki. But I've found his twitter (just google his username) and he's quite alright (I think)

I'm not going to race or anything, Jakki. I just want to do it because my metabolism (before HL) had begun to slow from the pre- and early-20s glow and I wasn't naturally thin anymore... so I have to work out so I look pretty. Superficial? Yes sir! Although being healthy post intense cancer treatment now gives me an extra incentive I suppose....

Now I've outed myself as the worst form of human being (hopefull you haven't judged me too much) I might well go and find a Runner's Need or something to see what I can find - I have an exercise bike too. And that girl I was kind of dating before "cancer-ain't-sexy" kicked in also made me a workout plan... I can rejig that to suit my needs now. Absolutely no arm strength whatsoever now, though!

Moomy, I've been using the past participle to refer to cancer since I got the remission on the interim PET! 

John - that's an awesome idea! However, I don't really like tats too much; think I'll just take the Trill spots (okay, if you get that reference I have LOTS of respect for you) and be happy!

Hope all are well. I just cooked my own chicken chow mein from scratch and am very satisfied with my own skills. I will be a perfect boyfriend. Teheehehe

Tom

A Trekkie!

I've seen your photo, you are a good looking lad they'll be knocking at your door.

When I took up running about 9 years ago I never thought I'd do races but have found it focuses me and I get out more to train. I don't chase times, just run for fun, often I don't even take a watch, bizarre really as every other sport I am v competitive (you should see me on the squash court, never say die!) running I simply do to chill and enjoy. So I can't rope you in for a mud and obstacle race next year then? 

Glad you have found Mark is ok, was getting concerned.

xx

Don't worry I'm back!

Well. that was a fun few days!

William came round  Sunday, to stop the day, and night, and I was planning on doing my useual Sunday laundry (actually skipped it the week before, so had virtually no clean clothes left).

Just before he came round, I started feeling sort of ultra-fatigue; I'd felt fine, on waking first thing.

Sort of hard to describe; basically, just trying to muster the energy to get up and go pour the coffeee, which had just brewed, suddenly seemed impossible.

and, well, basically I just knew I was ill. Got William to measure my temperature as soon as he arrived;  38.9 degrees.

Bearing in Mind I'd only last been in, for the infection Friday, when they'd not kept me in but discharged me, after injections of err, menaponin? err, some antibiotics with 10% homology to penacilum, which although I'm allergic to penacilium I'm allowed/able to have.

Anyhow, so soon as we saw the high temp, we phoned haemotology, rather I had to ask William to call them, I just couldn't handle making teh call.

In a cab five minutes later, and into A&E, eventually onto a bed, in a side room, Dr came down from the oncology Inpatient unit, to put a line into my port (no one in A&E could do it), and more antibiotics went in.

Odd thing; within a few minutes of the antibiotics going in, a headache I had just vanished.

Wheeled up to oncology inpatient unit (the outpatient day unit, isn't open on a Sunday).

litre after litre of saline, and mainly then glucose drip, plus more injected antibiotics for the rest of teh day, and all through the night; Luckily I'd bought my IPod in, and my phone; as the obs and injections of antibiotics were frequent, I just sat up all night not sleeping, listening to virtually everything on the Ipod, whilst making slightly odd comments about the hospital, nurses and my need to constantly pee due to the vast amounts of fluids, on twitter...

Gosh, not been onto the inpatient ward before, as I'm obviously an outpatient, but, wow, best, quality of nursing I've come across in any ward in a hospital, just amazing. and, fabulus food! - I'm so lucky to have skipped the whole losing weight on chemo thing I guess, and having had no problems eating, their seeming constant offers of food, cannot have done anything for my waisteline; as I just sat up all night, I had a good couple of snacks, sandwichs, throughout the small hours, and, really was just having to go  to the loo constantly, to let the fluids they were putting in be peed out... - had about 5 litres over night, plus a litre down in A&E, and on first coming up...

Finally finished with the fluids at about 7, and William returned to the hospital a bit after 8.

Finally got told I could go home, at about 4 PM, but by the time they got the medications sorted, and (the main one that held it up), the Dr finally got some more bloods done and back, I didn't end up leaving until gone 9 Pm!; William and I got home at 10...

Major panic this morning, when my temp showed 38 plus, again; but it'd gone really hot in the house, so after a walk out to do some shopping, took it again and it was mid 36's.... so thankfully got to not rush into hospital today!

Desperatly trying to get my head back together; in on Thursday for chemo!

Just about to bath. boy do I need this!

Oo, an interesting and positive thing; have doubled my hydrocortisone, on Drs sayso, and found, wow, at that level, its enough to take out the aching muscles, and seemignly suddenly arthritic joints! which is a bonus, may keep it at this level; I feel, well, almost normal on it. my heads working better, less brain fog/chemo brain, the fatigue is less (though noticing that I've a seriously low lack of stamina; been doing housework and laundry today, to catch up a bit with what I missed doing on Sunday). - Basically trying to settle down a bit, now, for a couple days, before chemo, and catch up on cleaning etc, before that, assuming I'll be rough after the chemo.

Also. suddenly realised something kind of important, and William when I told him, confirms it too; My last chemo hit the hardest; felt nauseous afterwards, for first time (no actual being sick mind), and just generally hit me harder; that was teh time the dayunit was ultra busy, and stretched beyond its  limits, and we had to wait 6 hours, for me to get a 'space' to recieve chemo; then, the realisation the useless Dr I saw in clinick had forgotten to do my lung function tests, etc; I didn't get any anti-nausea/premeds before that chemo; they forgot. - that might seriously explain why it hit me so hard!; kinda good though; as I'm now less worried about being quite so badly affected by this Thursdays chemo, as I'll definately remember to ensure I do get my premeds this time, even if they don't remember.

Right, I've a very important appointment, now, with the bath and as many Lush products as I can get in to it!

Mark

jakki gave it away its the leopard spots on one of the races on star trek, neck and head if the old grey cells have it right.  

Hah correct. They were a race that could have a symbiote parasite living inside them - the symbiote would live many lifetimes through many humanoid hosts. Jazdia Dax in DS9 is one

(I have a bat'leth in my house)