We Talk Brain Tumours

Tasha,

I'm sorry to read that. My sister lives in New Zealand and was diagnosed with early stage melanoma ten years ago. She was successfully treated and is now well.

Thinking of you at this difficult time. Life just isn't fair is it.

With love,

Naomi.xx

Well, here I am back, after my hospital mini-break. My son had four and a half hours of surgery for a severe hypospadias. As it is a delicate part of his anatomy, he wouldn't appreciate me going in to further detail - Google it and entertain yourselves! He has a catheter in situ for a week and tonight he is experiencing extreme bladder spasms - hideous. When I took him in for his aneasthetic, his eyes rolled back and it made me think of dad when he was very close to dying. I had a bit of a mini breakdown and a cry for dad.

Tonight it is two weeks since dad left us - it seems both longer and shorter than that and I still can't believe it. Tuesday is dad's funeral, wednesday is my son's stitches/dressing/catheter removal and next Monday is my appointment for my overactive thyroid (had to postpone it when dad was dying). Ho hum. I shall then bid farewell to October, by far the worst month of my life.

Thinking of all of you on here tonight - Ange, yours was a very touching post. How lovely that Gino's friends think so much of him.

With love to all,

Naomi.xx

Catg, Susii and Naomi, thank you for your kind words and reassurances. I know the outlook for hubby should be good, but I'm at that stage where I'm feeling a bit sorry for myself and just wonder 'why'? I'll be ok x

Naomi, you really are a wonderful, strong person. Your family and friends must be proud of you and how you manage. Hoping the next week all goes ok for you xxx

TashaBtn, when Paul was diagnosed with his BT in the January we were stunned, in the February he was diagnosed with a second primary cancer - sub ungal (beneath the nail) melanoma.  He had his finger amputated days before starting his radiotherapy for the BT.  No further treatment was required, however TMZ is used for both BT and melanoma...   No matter it is still a scary time and I wish you well

Naomi, poor boy, he will be sore for a while!!!  Will be thinking about you on Tuesday xx

Love to everyone else - speak to you all when I get back Joanna xxx

Morning All,

Noami, poor lad, my 17yo son had a delicate operation when he was 12 (due to my GP at the time we first enquired he was 5, telling us to wait)......thankfully we had private health then and arranged it during the school holidays so none of his mates knew about it!!!!

I ended up spending ALL afternoon at the hospital with Lara, basically the end of her little finger on the right hand looked like it had been broken and reset badly.....however, my daughter being the biggest drama queen has never complained about an injury to it.  It does seem to be curling under even more lately - mostly because she tries to hide it from her friends (13 is a delicate age apparently) and because of all the writing they do at school.  So I eventually talked her into seeing our GP who wasn't convinced it was an injury but could have been a deformity.  So we are referred to a physio, who saw us for 10 mins and said she needed a splint, they don't carry splints as small as my daughter needs, so it would have to be made to measure.  OK.....with me so far, the physio's department didn't work with our local hospital (what!!!!!!!!!!!) so I would have to go back to my GP and ask for a referral.

So, yesterday was our referral appointment, the very lovely ortho consultant took one look at it and said "this looks like an old sporting injury, lets get you x-rayed".......off we toddle to x-ray and way, then we go back to the ortho dept and wait and wait........finally get seen and he has a big smile on his "when you're right, you're right"......the x-ray looked terrible, the movement in the tip of her finger comes from the break not the joint and apparently it happened years ago.  Very common with netball, cricket, rugby players.....all of which my daughter played at primary school and has since added gymnastics, trampolining and javelin at secondary school.  He thought they could fuse the break to her joint which would straighten the finger but make it stiffer, however, he wants another colleague to look at it.....a hand surgeon. 

So now we are back to waiting for yet another referral.  Apparently you can get this type of break just from tucking a top in, or when making beds using flat sheets! I feel terrible she has had this injury for so long, 5-6 years maybe, but once they are past the age of you bathing them, who actually studies their kids hands, I mean, she still comes crying to me from a paper cut......so how did she not feel her finger break???

I am not a big fan of fast food but to cheer her up and the fact we were so late and needed to rush to get to the karate class on time (am I convincing you it was out of necessity yet), we stopped and grabbed some healthy McDonalds on the way home LOL

The sun is shining here and I hope everyone can have the best weekend possible under the circumstances we find ourselves.

Love & Strength to all who want or need it xxx

Debs I am sure they will get your daughters finger sorted - when my Son was 15 got a call from his school to say they think his hand was broken I replied oh yes what subject is he doing double maths to which they made me feel so bad I went and got him from school took to a & e cursing him as he had injured his hand at football the previous week but only now when he was in school did he want to go to hospital - spent all day there and yes he had broken it he did nt care a bit just got him out of school !

This morning, Alan thought it was quite normal to collect the wheelie bin from the end of our drive which abuts a main busy road in T shirt and boxers - it really is getting bad.   He just doesn t care what he looks like.  

Feeling very low today as weekend looming and knowing what time I am in for, really need a break but feel so alone apart from coming on here.  Angry want my old life, social life, husband back   hating the bloody disease.   I know got to think positive but so f in hard.  Sat in my office at mo as don t want to go and talk to friends who will be chatting about what they will be doing........sorry for the depression just how I m feeling Julie xxxxxxxx

Moving us up.

Cx

Julie - no need to apologise, we all understand. It was the "inappropriate" personality changes I found hardest to cope with. I could never write on here what dad did as it would be disrespectful to his memory but all of us who have been there know. Please carry on posting, sometimes it helps just to know someone is reading it and thinking of you.

Debs - my eldest daughter broke her middle finger last year at gymnastics. We have had so many hospital appointments about it, it's getting ridiculous! Surgery for her next May.

Today I have been mostly dealing with Herbie's bladder spasms (caused by his catheter). Oh my. These spasms make baby colic look like a walk in the park. I had my bags packed ready to go back to hospital today so he could get Oramorph and then, after 12 hours of screaming, he fell asleep. Tonight he did a HUGE poo and has soiled all of his dressings ..... he is still breastfed and now smells like sour yoghurt. Nice.

Thinking of you all tonight, always here if you need an ear.

Much love,

Naomi.xx

Morning!

Thought I would just hop on here for a bit. Couldn't help but read all the stuff you are going through with your kids and their fingers! I actually work as a scrub nurse in a trauma theatre and part of our service is dealing with fingers of all shapes and sizes!! Debs, with your daughter, one lad damaged his fingers when he was young and his mother never knew. It was only when he broke it a second time that the old fracture was noticed! There are some fantastic really tiny plates and screws that they can rectifiy any broken fingers. Its so common too. I do feel for all you though when having to hang around in clinic waiting to be seen to. Its bad enough when your adults let alone kids waiting around to be seen. If sometimes you seem to be waiting for hours, its quite often because they are caught up in theatre!!

Naomi! Hope your lad is okay after his operation. Its so difficult for them at that age because they can't understand the pain they are in.

Julie,  though Steve is fine and at the moment he is plodding along, I can identify to how you feel about wanting your old life back. The thing that I crave most for is my own space. Because of working full time and also having two adult children still at home, it is a very rare occasion that I actually get left in the house on my own - in fact its happened twice in the last 17 months! But hey ho! at least Steve is more or less back to how he was personalitiy wise, though he does get bouts of feeling down. THAT is what is going to hit me I think if the tumour grows back. Also as well, the way you don't want to hear your collegues chat and also how you feel its easier just to cope alone I definately know how you feel! What irritates me is when people start moaning about the most trival of things! I had one day when a colleague was so upset about her daughter not getting the grades in her A levels. Okay I listened once, then she went on and on and on until I just said ' At least shes got her health and she can always try and resit if she wants too! Now will you shut up!'!!! And she did!

Right! Am off shopping before I take hubs out up the clinic for his flu jab, then we walk the dog and then I have got a late shift today!!!!

You all take care. x

Hi.Im posting this here because I know this group is often replied to.Ive just read a post in the Lekaemia group called A Birthday Surprise?   Christopher will be celebrating his 18th birthday soon and his Mum wants people to send him cards because a lot of his friends have deserted him which is awful.The address is  Christopher Smith,14 The Furrows,Middle wallop,Stockbridge,Hants.SO20 8QL.Thanks very much