Recently diagnosed

Hey all....thanks for birthday commiserations...just chalked up to non event and will celebrate later....there was some light though....Oran was given job of carrying in birthday cake, complete with candles....concentrating more on his singing the cake slipped off the plate and landed upside down onto the floor....candles squished out rather than blown out!  His response?  Run to kitchen, get a spoon and eat from floor!! Waste not want not!!  This morning he asked if he could take rest of 'floor cake' into school to share out....was not amused to find out its now in bin!! 

Jakki....so lovely to read that you've taken another big step to normalsville.....hope kids dont ware you out too much!! Xx

Moomy...that sounded like a hellish treatment day for your daughter...was exhausted just reading about it!! X

Tom...good to hear from you....I constantly touch my neck also....also get niggles but hoping it's due to my picc line

Dxx

Hi Daisy,

I'm not sure many folk could beat it, it was awful! They came around asking for volunteers to drop out and be first the next day, but she was away working the next day so couldn't do that......her consultant got wind of it too, was NOT a happy chap! 

Thank goodness that's never happened again! 

Hugs xxx

Hi guys,

Hope you are all well today.

Cezza, Daisy hope you are ok following chemo. only one more to go. Belated birthday wishes to you Daisy.

Jakki hope work is going ok and they are easing you in.

Moomy signed and shared petitions on facebook and twitter. Been so angry about if.

Mark I also have a bday in November. Hope ýou are well.

Well been for bloods today.  Saw a doctor too been examined for the first time seen diagnosis.  Neutrophils over 4 so all should be ok for tomorrow. yippee.

Well survived my first morning proper! All was calm ( Moomy, I gave up teaching mainstream 2 years ago now work as level 3 teaching assistant, all the good stuff without the extra work after hours, in an enhanced unit for autistic children) enjoyed being back in it but felt a little like a rabbit in the headlights at times!

Daisy and Cezza, hope you are not feeling too rubbish, sending gentle hugs.

Cee, nearly there whoop, fluffy chick has been replaced by butch for me, looking forward to the "looking a bit more like myself" phase. Fingers crossed I can come off these steroids soon so at least my fat face will go back to normal.

Tom 1 more week, I'll put that bottle of prosecco that was left from weekend in the fridge next Wednesday.

Mark, two breakfasts, I am eating constantly at the minute, having to make sure I have lots of nice fruit prepared in the fridge or I'll just grab shite! Have been roasting double veg at dinner time so I can warm it through when I get the evening munchies, I am 5lbs up since I started the steroids 7 weeks ago! 

Hi al

Daisy not to worry, I'm niggling away daily. It's just a head**** :). Let's keep battling! Sounds like you had some comic relief on your birthday!

Krazy - not long to go :)

Jakki - so glad everything is normalising!!! Yes 1 more week. Oh boy, oh boy

Tom

Jakki! so glad it went well!; it'll only get more and more normal.... - then one day it'll become the grind of getting up and goign to work, and/or the pleasure  just as it was before!; I'm sure your hair will be fabulus real soon!; still must try get a pic of mine... - there was a pic of me taken today, but I@m not sure you can really see  my hair fully;

Was in the cafe to have tea with William's daughter and ex-whife, which was really good. Whilst there his daughter gave me a present... - a purple feather boa, and a tiara!  I kid you not... - I think I've given up most pretences of ever ending up back at anything  vaguely ressemling what used to pass for 'normal' in my life, so the next best option seems to be 'time for something totally differnt', so, bit by bit, it appears I'm gradually turning into either a cross-dressor, or a drag-queen, really not quite sure which at the moment! - was sporting my new gorgeous red jacket today too, with beading on it... - apparently, me in that, with the boa, and tiara, got us a few odd looks walking back down the road, and in the supermarket.... - since all this lymphoma thing kicked off, I seem to have lost the ability to care what anyone might think anymore, which is, oddly, a positive benifit of it all as far as I'm concerned....

Well, perhaps using the last eight months as a catalist for change is a good thing; William and I will marry, probably by the middle of next year, if things pan out right; he'll be moved in here by march, and some time after that we're thinking of leaving Cambridge as we're both somewhat fed up with the place, and, well, basically, to buy a decent house in a decent area we'd both like here (I need somewhere off this main road now), Cambridge is just too damn expensive anyhow... - Perhaps I'll change my name from Mark to Marciar   afterall!

today was a good day... I skipped lunch, just surviving on tea and coffee (a bit more like the old me), and just cooked a meal for William and I; off to the pub soon, so I'm sutiably ready for the MRI scan tomorrow, in maternity at Addinbrookes (quite why I'm being scanned in maternity, I've no idea!); this is for the MRI of the head/pituitary,- supprisingly not at all worried about it, even though there is a chance this might reveal the long ago forgotten possibility of a pituitary lymphoma or adinoma... - if it is... then I'll just have to sharpen my chainmail, and get set for a second trip through cancer, can't be helped, if it is that, so, well, no sense in predicting the worse...

hope everyone else is OK; Tom, hows this girlfriend of yours? all going well still?

Best of luck to anyone with treatment looming iminantly.

Oh Mark/Marcia, what are you like? bless you (but in a really friendly way of course) you make me grin every time you write......sparkly jacket and feather boa with your ponytail, I'm certain sure you must turn heads. That wedding will be simply great! As for what everyone else thinks, well, if YOU and the ones you love and care about love you as you are, then why worry? I'm really looking forward to meeting you and William! 

Jakki, glad the first hurdle is over,  it will all get much more normal now, your job sounds much less challenging than I was worrying about, sounds great to leave it all behind you when you get out of the door. 

Krazy, glad you are ok.....

thinking of each and everyone of you....

hugs for all xxx

Please tell me more about your radio spot Moomy, I will try to tune in. 

On another note, does anyone know whether chemo can cause or exacerbate joint pain or arthritis sort of thing? I've had excrutiating pain in one knee for about three weeks. I thought it was just tendonitis and in fact it may well be, but doesn't seem to be clearing up as these aches and pains always used to, in my experience. I haven't gone to GP as it seems do minor compared with HL and there's not a lot you can do about getting achey as you get older! But msybe it's time to ask about some sort of anti inflammatories or something now. 

moomy-

Yep. that sounds about right for me! - I doubt I fitted into anyone's notion of 'normal' before this entire rollercoaster ride started, and to an extent, from the beginning, I was kinda determined to ensure it got less normal as I went along.; I was only half kidding when I was telling everyone I only went to chemo, hospital, etc., in order to entertain the nurses and other staff... I think I did a fairly good job in this respect... = Now it just seems a shame to give it all up, as it were, adn to be honest, with the cognative changes, and concentration vanishing etc, I doubt I could try fit back into any vague notion of normal...

I've not really got the pony tail at the moment; I can still bunch it up into one, but I'm just enjoying having short (ish) hair like this; Not only short, but sort of lighter and fluffier, so actually, I can have it short, without it annoying me, and its a novel experience having hair like this, and thus far I'm kinda liking it like this, makes a change from just pulling everything back tight in the pony tail all the time to try control it... - I'm guessing it'll grow longer with time, but whether it'll ever reach as far as it once did I'm not sure (it used to be down to my waist).

In case anyone wonders why I'm up so early, posting; I'm not... - got into bed at about 12.30, and gave up trying to sleep at about 4 AM, and have just been sitting on the sofa, with a mixture of various teas, meditating and listening to music through the night... - had to take an extra hydrocortisone at getting out of bed, as I felt kind of low, so took a 20 MG tablet, which should be able to keep me goign until about 9, when I'll take my normal morning 10 MG dose... - well if nothing else I can dose up on the steroid during the day, to keep me going; have to leave for hospital about 1.30 I think, to try get vascular access to drop a line into my port, before the MRI scan, at about 3... If all goes to plan, we'll then walk home, via a nice pub   I'd often visit on my way back from chemo; probably just a couple of pints, and then home, to a promised meal of peas n rice, with either goat curry or jerk chicken, from the new  fabulus Jamican place opposite my house (rapidily replacing curry as my national dish!)

Alternatily running hot and cold at the moment. I think the running hot, might be the 'hot flush' from the testosterone, that I get  (yeh, the testosterone was to stop the menapause hot flushes; yet it itself produces a differnt type of hot flush; less bad actually!), and I guess the running cold bit, is just the tiredness setting in now...

Just trying to gauge how long I can wait before eating... - I don't really want to wake the house up, but I'm getting hungry... - sausages, eggs, bacon are all in the fridge, and... well damnit, I think I can justify a cooked breakfast! - but the smells if not the noise of my clumsy neuropathic fingers would certainly wake everyone right now I think....

hope everyone else is OK, and still safely tucked up sleeping! - I'm starting to think I might have to give in and just pleed with my GP to give me more temazepam... yeh, I know they're addictive, and they don't want you addicted to sleeping tablets, but if that's the only wa I can sleep anymore, a doped up sleeping tablet state, is probably safer than me trying to function days at an end, with no sleep whatsoever... - Of course, perhaps it'll settle down more, once my hormones are a bit more realligned; next testosterone injection is the 22nd October, and I think it takes more than one injection to get levels up to near normal, and a stable state, they'll be measuring them every time, though of course we've no 'before' measurement of what my normal  level ever was, which makes it a bit hit and miss...pretty sure the testosterone interacts in some  ways with the hydrocortisone too, and at some point they will probalby want to add growth hormone injections  to the mix, as the results showed I was missing the pitutiary hormone insulin like growth factor, as well as the weird FSH, LH, levels, and abscent ACTH.... - This endocrine laugh will be the gift that keeps giving... At least the MRI today may shed some light as to why its gone AWOL...

Oh Mark, I really hope sleep catches up with you soon.....

Cee, it's 1pm on 3CR, the Nick Coffer show, I'm the first guest it seems....argh, but nervous now....

thinking of you all

hugs xxx