We Talk Brain Tumours

I'm just on my way into work so this is a real flying visit- just to say to Naomi, Ange. Sharon you are all so much in my thoughts at the moment. You take care.

Debs- seeing that picture reminded me of when Steve was have his radiotheraphy - the radiographers used to smile at Steve cos he always fell asleep and and could actually snore through the mask!

To everyone else including Elaine and Julie will speak in more detail when I am not in a hurry!

Thinking of you all xx

Morning all,

Naomi I am so sorry Herbie's op has not been succesful, I looked up the condition and can only imagine the pain he is in.  "male" problems are not something we talk much about, but my now 17yo son's skin was attached to the shaft as a toddler, I took him to the GP when he was around 5 as when he urinated it used to balloon within the skin causing many infections.  The first GP I saw, was foreign (whether it made a difference or not I can't say) but he virtually accused me of wanting my son, and I quote "mutilated" and that we should just wait and see what happens.  Well by 14 years old this problem had not rectified itself and they had to operate.  He was hoping to be stretched free during surgery but unfortunately he required a circumcision.  This left him not wanting to undress in front of other boys at school and quite emotionally scarred - just wish I had stuck to my guns when he was younger.  He isn't so worried now but its still a fairly sensitive subject!  I am wondering if its why he still has lots of friends that are girls, but no girlfriend, just a hunch!

Zanandu, during my radiotherapy I used to imagine Princess Leah (sorry if the spelling is wrong, I've never watched the films) running around inside my brain using her lightsabre to zap my bad cells and on other times I'd imagine that game where the worms pop up & you whack them....and thats what the RT beams were zapping, bad cells would pop up and kazaaaaaaaaaaaaam......yeah yeah I know, I am weird!!!!!!!

Ange, I am glad that Gino got the send off he deserved. 

Sharron, hope your father is improving.

Apologies if I have forgotten anyone.

Love & Strength to all who want or need it xxx

Ange

I am so pleased for you that Gino's funeral went so well. Your daughter sounds amazing and much more brave than I was.

300 people is amazing, just shows what a well-loved man he was and always will be.

Thinking of you, Gino and your lovely daughter today and for the next few days as you try and come to terms with your loss.

With love,

Naomi.xxx

Elaine, I can identify with so many of your feelings. As hard as it is to be on this side of the fence now, it was so much harder when we were at the same stage as you and Dave. All you can do is to keep trying to plod on, keep doing your best, you will get there in the end.xx

_Debs, my eldest son was cirumcised at three years old as he had phimosis. Herbie has distal hypospadias with chordee, torsion and a hooded prepuce (who knew I'd add being an expert on brain tumours and penises to my CV?!). They have corrected the latter three of his problems but his hypospadias is still there, just on the opposite side. I have just changed his nappy and there is quite a remarkable amount of blood. We are currently waiting to pick our eldest daughter up from seeing The Woman In Black in London then I will decide if we have to go back to hospital AGAIN. Grrrr.

I love reading your posts Deb, keep them coming please!

With love,

Naomi.xx

Naomi, thats quite a CV, I am sure Channel 4 would snap you up in a heartbeat lol

I am off for my flu jab this morning at 11.31am yes thats right, 11.31am, shall we have a little sweepstake on what time I will actually get it done, apparently they book 2 minute appointments!!!!!

I am hoping it doesn't have an adverse affect on me today as we off out (again I hear you say, thats two weeks running!) tonight for dinner at ........ now how can I explain this set up, my husband is chief instructor of a karate club he set up with his friend Paul, karate clubs then have to belong to Associations (bigger clubs mostly) who then belong to the Governing Body for England - well we are going to the head honcho of the Associations house.  She is a metropolitan police officer and current World Fire & Police Games gold medallist for fighting (and she looks as scary as she sounds lol) and her and her lovely husband Colin, a D&T teacher and VERY deaf are strict vegetarians.  Should be fun as my husband is a complete caveman, expects meat of some description with every meal - with the exception of fish!  So I am in for a night of karate, karate oh and maybe more karate!

Two kids are still in bed as they have broken up for half-term already and the eldest has just left for sixth form.  Maybe I should head back to bed and watch some tv.........but more than likely I'll  just start on the laundry.  Think I am going to have bacon sarnies for lunch, just to get my protein for the day hehe.

Wishing everyone the best weekend they can have and as always, love & strength to those who want or need it xxx

Hi all, Having a really rough time at the moment, Alan is doing too much, we have moved up to the farm for a trial run as his brother is away and he is doing far too much, in a right mess when I get home in the evening and I know this is going to lead to seizures but he will not listen to reason and spent all last night with him very agressive and angry at me as apparently its all my fault ( I know this is the tumour talking) it upset me so much I ended up in tears all night and then this morning he tells our Son who comes up at the crack of dawn to do his dads work that Mums not talking to me as  I upset her, then comes in and apologises - don t make it right or any better - feel so low today and yes I know I should let it wash over but it is so bloody hard.  I have not stopped talking to him, he is like a child and makes things up now,.  I have tried to explain this to my Son and Daughter they know but don t seem to help me in this desparate times, don t know what will.  I know that very soon Alan will not be able to do anything and that hurts so much in that all he wants to do is a little of what he used too but then I get all the nasty, moods, obsessive etc nature.  I know you will all recognise what I am saying just wanted to share it with you.

Debs u go girl, very jealous two weeks running, perhaps a KFC after for your hubby s meat intake lol

I really want to go out tonight and get totally p      d but haven t got the energy.

Love to u all

Julie xxxxx

Right! Have a day off- We have just been shopping, taken the dog for a walk, we had a coffee and cake - have got some blimming course work to plough through which I have to submit something today! Its no fun.

Debs- you made me laugh when you talked about Princess Leah zapping away at your bad cells. We used to have a real social gathering at Steves radiotheraphy appointments! There was a group of patients varying from Breast cancer, bowl cancer, prostate cancer etc etc that we used to see as Steves treatment coincided with theirs and we used to laugh so much we all used to look so disappointed when one of them got called for their treatment!! As for your dinner appointment tonight, hope you have fun there!!! That sounds brilliant. Oh! And Steve had his jab down this week- his was 09.48! i asked him about 10 times 'are you sure the time is right?' !!!

Naomi - I bet by the time you have dealt with all your sons treatments, with what you have been through with your dad and also with all the situations, you would make a brilliant health professional. You seem to have been through so much indeed. My friends son had an operation for EPEspadysis (Spelling) and he had a lot surgery performed in London- its slightly different to your sons- he's done really well over the years thankfully- but the fact that its still not been corrected for your son is worrying- have you considered a second referral? Hope everything gets sorted there.

Julie- thinking very much about you with Alan at the moment. One thing I was going to say to you is do you actually get time for yourself at all? Even just a couple of hours a week where you can do something for you?

To Ange- thinking of you at the moment, just glad everything went smoothly for you there.

Elaine- its not an easy journey even when your loved one seems to be coping with treatment- though the seizures are a worry. Hope that things settle with you there.

Pete- I think of you and Ali when I come on here, as I do Martyn and Doreen. You take care.

Cathi, Joanne, and all the others that are on the other side of the journey, thinking of you all very much.

On a personal level- this is about ME- I still pinch myself every day as to how well Steve is coping- Its almost - note the word ALMOST - back to normal for us. Life will never be what it  was but, I just appreciate every single day that I wake up to hear Steve snoring by my side- or when I get digged in the back because I have woken HIM up snoring!!

Thinking of you all

Zan ( I'm another Julie so its less confusing to call me Zan!)

Julie, I can't imagine how hard this is for you, I sometimes get moody and a bit snappy and othertimes I get tearful for apparently no reason! You are caught between the devil and the deep blue sea, wish you could go out and have fun without feeling guilty which no doubt you would!  KFC after, now that's something I could see him doing LOL

Zan, I understand what you mean about having a little social gathering at RT, I was going for almost 8 weeks and the ushers (I am sure that's not the correct job description) that took us from the main waiting area to the inner waiting area's for each machine, became like friends, having a little banter each day.  I made sure I got them a little box of choccies each when I finished, as they may not be as skilled as the radiographers, but their smile and chit chat made all the difference. Although they got used to me answering the daily questions before they asked it...DOB, address and NO I am not pregnant today either  I still pop through the RT department sometimes as its next door to oncology just to say hello to them.

My appointment was pretty much on time - who would have thought it.  Hurt a lot less than I expected, blood tests are far worse.  I have a little red patch there now and its somewhat warm to the touch, but hey I got called "young lady", which I was in comparison to most of the other folk having the jab I guess, but it made me smile :)

Just had bacon rolls with the kids, just need to sort my clothes out - what to wear, what will be comfortable and what still fits - this could take some time LOL

As always, love & strength to all who want or need it xxxx

Julie - you NEED some time on your own. It's essential, that way you can go on caring for Alan refreshed and revived. Does Alan go for day respite at the Hospice at all? My dad used to go once a week and mum literally lived for her six hours to herself. It kept her going really.

We can all identify with what you're going through. Keep on writing it down, it really does help to know someone out there is reading it and will empathise exactly. It's such a cruel disease. Dad's Mac nurse said it was far worse than a cancer that causes actual physical pain as the emotional distress is so hard to treat.

Keep going hun.

Naomi.xx

_Debs and Zan,

Thank you for your comments, you are both so wonderful.

I was warned that it was highly likely Herb would need future surgeries as his hypospadias is so complex. At the time, I was rushing from the Hospice where dad was to the hospital an hour away and to be honest I think I chose not to hear what was said to me. I could only deal with one day at a time back then and my mind closed off. He had the surgery almost two weeks after dad died and even when I was signing the consent form I wasn't really with it. Poor little sausage, he's so sore and bleeding and oozing and stuff. He just wants heaps of cuddles but even those cause him physical pain.

My surgeon came down from Great Ormond Street, I am not holding him responsible - having looked through all of Herb's letters that I was copied in to that were being sent to my GP, I can see now I should have taken more notice of what was being said. Ho hum .....

Thinking of all of you on here.

Naomi.xx