Recently diagnosed

Yes, Nath, I too am waiting till you come to report that R word! ( it took many years to hear that for our lass, it's a great moment! ) 

hugs xxx

And, Phil, thank you for that virtual box of chocolates! My birthday cake is rich and made with some cream, so I have the 'small' amount of that to eat first! (Daughter went home yesterday with a good third, son will collect another good third today) 

hugs to you all xxx

Not just good news but *brilliant* news! :-)

Keep up the good work,

Ian

Hi Jakki, Tom, all, and to our new people I think (sorry I'll try catch up properly at some point, my brains all a bit........ out to sea, yet again just for a change, just this moment!)

Thought I'd quickly put something in here.... before you all get panicy again because I've not posted in a few days! pah! I'm deadly seriously when I say I'm indestructible and imortal.... it just doesn't feel like it a lot of the time right now!

Ahh.

Something differnt, not a temperature this time.

Tuesday night, went to bed, eye a littel itchy. eye got more itchy. couldn't sleep. got out of bed at about 4 AM, giving up sleeping again (I'd not slept just one night before anyhow), so had a cup of tea... eye got worse. so painful.... (to anyone new BTW, I am blind, which predates my lymphoma adventure, so I can't easily check visually what's up with my eye say like this etc). Really needed to messure my temp; sure I was high,  but, of course couldn't.

Eventually gave up. phoned the 24 hour haematology line.

Which turns out isn't 24 hours. got a generic hospital answer, and some overnight treeage person. They... sort of understood maybe a couple words I said, and said they'd pass my details/information onto/over to the 24 hour Haematology people. when they came in.

Expecting a call from the haematology/oncology people, they never phoned. so I phoned back about 8.50.
Told to go see my GP.

William got here about 9.30 10 AM (he had to get the bus here so was as early as he could arrive).

phoned GP.

got appointment for 5.30 in the evening.

Then got phonecall back from GP, earlier, and got in earlier, so he had a look at the eye. didn't think it was infection, but very sore, bed, and damaged cornea.

Got an appointment for the eye clinic at the hospital, for 6.430 PM.

Got into eye clinic eventually at about 7.

If I'd been feeling fitter, and less weak from the chemo, the next thing would be the police arriveing to arrest me. I'm goign to have to pu in an official complaint about the nurse, who I first saw, and then the doctor at the clinick. - because I'm blind, maybe because I'm gay too, I dunno which, they decided to pretend I wasn't human.

I can deal with the chemo. the drugs, the side affectsu. This.... I'm not sure how I'm ment to deal with, I'm not strong enough to just use physical force and  violence. yet.

Oh. and I probably had another seizure yesterday afternoon; some petit mal I guess. Told oncology about it when they phoned, but I assume they will ignore it, as they ignore everyrthing I say to them.

Was convinced, as we left the eye clinic,   that I had gone insane. I can't handle people, the nurse, and doctor in this case, at the eye clinic, doing things, acting, talking, in such a illogical, irrational, insane manner; either  they're subhuman inteligence, or I am insane. I'm really not sure anymore, which.

- people I trust, keep telling me it isn't me, but, I'm starting to wonder.


Told again earlier, by nurse, from oncology on phone (she's really nice), to 'take it easy', and 'phone up if I feel ill'.

yet. again. I ask them to tell me what 'ill' means. they don't know. I really.... really.... wish they could talk sense, and logic. - I am ill, therefore I feel ill, so, from being ill and feeling ill, why can they not then tell me, what this 'differnt' 'being ill' is, I'm ment to tell them about? I can't know I'm doing it, if I can't define what it is, or how I'm ment to be feeling wehn I'm experiencing it.
so. instead. I'm doing housework. have swept upstairs. cleaned bathroom, tidied bedroom.
Just tidied and cleaned front room, and tidied, cleaned and steralised kitchen.
Upstairs swet, hoovering next, then some mopping, and then any final bits i can find to do.

Relaxing bath later, and probably pizza for dinner.


Oh, and Jakki!; I skipped the Chinese on, err, Tursday night I think it was; which was good, as William and I had a fabulus Chinese last night, after getting back from the hospital, at , err about 11 PM! - seems to me I have to be force starved all day long as soon as I want any medical attention; I'm virtually hypo after most chemo sessions as the food provision at the hospital is so apauling (unless we make it out to the chip shop nearby)

Energy levels up today, mind, after actually sleeping last night! - My inability to sleep is making me so much more iller than the chemo I think.

Oh Mark,

You really do need an advocate to get all this sorted out! It's all such a muddle and nobody seems to want to know the big picture, which is all these small bits joined up, you need someone prepared to join everything and deal with the whole! 

I still think it should be a really good GP who should have the time to spend sorting it out with you. 

Take care, all....

hugs xxx

Oh Mark, I knew something must have happened, I agree with Moomy but expect that at the minute it's hard for you to summon the energy to push for answers. Could you make a long GP appointment at a time time when William could come, I agree with Moomy that you need someone to pull things together. This process is hard enough without having your added complications not factored in. You sound low today, hope you have a very expensive bath bomb put to one side lovely! Sending extra big hugs today and hoping you get some answers soon xxx

Gosh a busy day for me, bloods this morning then my usual walk back up the hill, this is getting harder each time, had two little rest stops today (it is a massive hill by the way, if anyone knows Matlock they will know what I mean!). After that went and met a lovely lady for cuppa and cake, nipped up to support some of the kids I used to teach in our local footy tournament, have just driven to work to hand in sick note and have a catch up with the girls. Just waiting now for a friend to come so we can have a practice putting up the tent I am lending her. Phew a fun but busy day will sleep tonight.

Much better weather here today Phil, hope you saw some of it too, Tom has clearly decided to share the sunshine! Might even mow the lawn tomorrow, stranger things have happened.

Nearly packed now for our weekend away, so excited but then I am a big kid when it comes to holidays!

love to all

Jakki xx

Hello to All, 

I have just come across this group - loving the spirits and support you are giving to each other.

I have also been diagnosed with HL. 

My diagnosys has been a bit of a shock at first but I think I have managed to come to terms with it. I should mention that my husband had leukaemia 5 years ago and relapsed 2 years ago, so I know what to expect from chemo etc,  although I will not be treated with the same drugs. 

I hope you don't mind me joing you - if you do tough as I'm going to anyway ;-) I have been given my diagnosis about 5 weeks ago after discovering a 2cm lump just above my collar bone. I went to my GP (which got a bit concerned about it and sent me for ultrasound followed by biopsy). I must admit I feel lucky that they haven't ignored it, as I have read a lot about people whose diagnosys had been delayed because of the ignorance of their GPs. I haven't had any other symptoms of HL apart from my lump, but I think I might be slowly developing itching! 

I had PET scan last Thursday which confirmed I'm stage 2 with enlarged lymphs on both sides of my neck and chest. At the moment the plan is to start chemo with the next 2 weeks (just waiting for appt letter), and it will most likely be 6 cycles. My treatment got slightly delayed as I had IVF to freeze embroyes (I'm married -no children). 

It is very encouraging to read that some of you are very close to be finishing your treatments and are in remission! 

Iwona x

Hello Iwona, 

You are right, this thread seems to have expanded exponentially! However, none  the worse for that! 

Just be prepared for being incredibly scared before your first chemo, everyone does and needs calming down! but, to be honest, everyone reacts slightly differently, so do keep your nurses informed as to how you are coping. they will be able to change drugs around to suit. 

Hugs xxx

Hehe hello all, I am sitting around doing nothing today and very much enjoying it :). I did just get on the bike though to slowly build up the fitness... am going to do my own chicken chow mein later, just waiting for the thighs to defrost

I don't dispute that I was keeping the warm weather hostage for my own benefit... figured I'd let you guys have a bit of the fun. 

It's just dawned on me that this is the first thursday in 16 weeks (SIXTEEN WEEKS) where I'm not sick to the stomach with anticipation regarding the next day's chemo. Oh my. Blog post written.

Phil - sorry to be abandoning you, Friday chemo buddy. Well, I'm not. But you get my drift I'm sure! Best of luck tomorrow, you'll truck through it no problem again I'm sure :) it's wimpy lil me that had the tough time with the devilish nausea...

Iwona - no worries at all :)... Reluctant welcome to you (is that the right phrase/? Obviously welcome but I wish I wasn't welcoming you at all.. paradox!!) Seems this thread will easily hit the 100 mark. As Nath says, I plug my blog often (I really should start getting paid ads on it from the referrals from this site :P) BUT if you wana have a look at me in January (I was 2a, with neck and chest - same as you! Big ol' lumps on my neck) and what to expect (though as you say you know what you're up to!) it's at havinghodgkins.blogspot.co.uk. Any questions ask, anything you wana get out... just spill it here!

Jakki - sounds very exciting :D sure you'll have a lovely time!

Mark - phew. Think the lovely ladies are right; try to get an advocate or someone 'on your side' to get all of this sorted and push it through. Seems like you need that sort of advocate character. Maybe see if the mac nurses on the hotline can help, too (Moomy, do you reckon they'd be able to lend him a hand?)

Hope all are well