We Talk Brain Tumours

HI Guys

Am reading your posts about teenage girls with a mixture of anxiety and amusement. It brings back such a lot of awful memories for me. My daughter was and still is an absolute angel. It was Charlie that gave us grief and I don't say that lightly.

When he was 15 he told me he was sleeping over at a friends house only to phone me the next day to say that he'd buggered off to Amsterdam for the weekend. I subsequently discovered that he had slept on a bench in the train station for two nights! Glad I didn't find out that until he got back. 

He was always really good at telling me things when I was distracted and there were many arguments which included things like "I told you Mum, remember, it was that day when the builders arrived and the water pipe burst and a plane landed on the house and you had that important presentation to do. Remember?". I got a call from him once saying 'Mum, I told you ages ago I was going to Romania with Max". Romania!!! I only found out because I rang him to ask him what time he was home for dinner!!!!

Our darkest time came when he threw a monkey wrench through the back kitchen door and smashed it. We decided enough was enough and we called the police in. He was arrested and cautioned. Was still angry when he came home but we did manage to get him in the support system and we ended up having family counselling. I have to be honest though, it was totally down to the marijuana. It had a terrible effect on him and made him extremely moody and aggressive. It wasn't easy but we managed to get him off it eventually and he did become a lot better after that. But the reality of the situation is that they had easy access to it at his school and there are boys there that are smoking it on the way to school in the morning! 14 and 15 year olds. It seemed to be the boys, I think girls are a bit more sensible.

He's 22 now and much better but is still a challenge. His temper has always been something that we've struggled with and last week he just seemed to spend the whole time shouting at me and his sister. I don't think it's any coincidence that he's smoking the weed again. He's adamant it isn't effecting him but we can all see it is. We couldn't say anything right and he was stomping around slamming doors and generally being vile. In the end I just sat him down and said 'Despite how crap you think I am or your sister is, the reality of this situation is that your Dad is dying, we can't control that, but we can control how we manage it. Do you really want your Dad's last memories of you to be like this? Do you want him to go thinking that you continue to behave in such an appalling way? Or do you want to let him go peacefully knowing that he has raised children he can be proud of. You need to decide because you won't get the chance to go back and change it.' It seems to have worked. He's been wonderful ever since. He's cleared out the shed. Sorted his room. Cooked dinner practically every night and stays up most nights to keep his Dad company through the dark hours. He can't do enough. Long may it last. I know he's back on the marijuana, he doesn't know I know but I'm watching him like a hawk and, I'm afraid that, even though this is his Dad's last few weeks, if he starts to become angry and aggressive I will have no hesitation in asking him to move out.

Anyway, this turned into a bit of a moan which wasn't the intention! I just wanted to say that I completely understand the trauma of stroppy teenagers. Most of them get through it before they get to 18. Just hang in there. They do eventually become human again!

With much love and strength.

Pam

x

Hi Everyone

Tony continues to hang on in there. They have now reduced his midazolam so that he may be a little more with us for a while. So I woke up this morning hoping that I would be greeted by a lively Tony. Alas no. He was sound asleep. He woke for a sausage sandwich but is now asleep again so the reduction in the midazolam hasn't really made any difference. Oh well, was nice to hope.

Naomi - I can completely see what you mean when you say that this stage in many ways produces the best moments. Tony has always said that he wanted to dance with Fay at her wedding to Joe Cocker's 'You are so beautiful to me'. On Tuesday, I walked into the lounge to find Fay with her head on her Dad's chest and he was stroking her hair with his good hand and singing it. Such a sad and beautiful moment. Poor poor Fay. She cried for hours afterwards but I'm so glad she has that memory and I'm sure a good cry is just what she needed.

A lot of time he isn't asleep but laying with his eyes closed and we have, many times, seen him put a thumb up to let us know he can hear us which is lovely and when he wants a kiss he puts his finger on his lips.

So we continue to keep him comfortable and include him in our discussions, even if he doesn't answer, we know he can hear us. The macmillan nurse came on Tuesday and we talked about the things to look out for as Tony gets to the very final stages so I'll know when the end is close. I'm not seeing any of them as yet which is comforting. 

Debs - is it your test result day tomorrow? I don't really need to say good luck as you already know but please tell us all over again please. You can't get enough good news on here and I'm happy to celebrate the same thing twice. Enjoy the Circe du Soleil. Loving your pics. Ollie is such a cutie. I could quite easily steal him away! We're enjoying having Mutley Dog back with us. She's settling well.

Well I have my six hours off today and am planning a shopping trip with the kids into Southampton. Fingers crossed we all get on!!

Wishing strength to all who need it and love to everyone whether you need it or not.

Pam

x

Pam, you write about your Tony so beautifully.

You truly are giving him the time of his life.

Mrs SG - thinking of you my lovely and hoping you are managing to make some nice memories.

Pete - you always know what to say to make things better. It is a gift. Thank you. I hope you continue to go from strength to strength. x x

Pam

x

Pam - your message made me cry, it was so touching. When Fay gets married she must still have that song played at her wedding so that Tony still plays a huge part of it. My dad's eldest grandchild (my nephew) is 18 at the beginning of March. My dad loved his beer and the pub and he literally couldn't wait until Thomas turned 18 so he could go to New Zealand and take him for his first "legal" pint! Even though I have been through losing my dad, I can't begin to imagine how it feels to be robbed of a father at such a young age as your children.

For the last three weeks of dad's illness he was bed-bound and largely unable to communicate verbally but a hand squeeze, or thumbs up, or raised eyebrow meant more to me than any words in the world. Dad also used to put two fingers on his lips for a kiss. My parents were in the Air Force and when my sister was small dad taught her to salute. Of course she couldn't do it properly and the bodged up salute became their special "thing". My sister arrived five days before dad died, he had been deeply unconscious for two days preceeding her arrival but when he heard her voice he opened his eyes, did their salute, touched his lips, she kissed him and he fell in to his last final sleep. Dads are amazing things and will spare their children most of the nastier things in life.

I feel for you with the situation with your son. I refuse to judge him for smoking weed (despite the horrendous effects it is having on you all) - for now, it's whatever gets you through the night. There will be time afterwards, in the weeks and months ahead to deal with it. Don't lose hope.

I am so pleased Tony ate a sausage sandwich. A good appetite is a good sign.

I hope you and the kids have a good day today. It will be so surreal for you walking round, looking to all the world like a happy family yet people will be completely unaware of what you are all experiencing.

With lots of love,

Naomi. xx

Debs - thinking of you today. Looking forward to hearing your good news officially. Hope you don't find yourself in a leotard up on the trapeze celebrating at Cirque du Soleil later!!!!!

Naomi. xx

Ah, I missed the part about the sausage sandwich.

Thanks Pam, the op was fine, well it was for me, didn't feel a thing!

We have Jays MRI at 9.30am Monday and Oncology appointment the following Thursday (23rd), hope its not a case of the calm before the storm.

Marney
xxx 

I just wanted to say I am full of admiration for you all. Some of you have so much going on that I wonder how you manage. I have a relatively quiet life, even my grandchildren are or seem to be towing the party line now. My grand-daughter was a nightmare when she was at school, she was allowed to leave the classroom to cool off if she felt she was 'losing the plot' and return when she was calmer! She's 18 now, at college and so different. School just wasn't for her.

My Grandson is the complete opposite, a real academic and if anything I'd like to see him socialise more. Never happy are we?

Luckily my husband and I both took early retirement, so we are available to run Jay to his hospital appointments etc. Dianna his wife doesn't drive as she has epilepsy and a tumour too, although hers is benign.

Anyway I just wanted to send everyone who needs it, strength, hope and encouragement..

Marney

xxxxx 

Hi everybody

Thank you so much for your kinds words of support last week i was having a bit of a wobble!!! As youve seen my cousin Laouraloo has introduced herself, it is laouras mum and my dad (brother and sister) that arefighting this disease together my dads being a [rimary tumour and my aunts being as a result of breast cancer. It seems everything they do these days they are doing together.

I was just wandering if anyone is having the same problem as dad, he has got a long term cathater in and has had a urine infection which he has taken antibiotics for but we called out the doctor again last night hes in so much pain, the district nurses came out just now and said maybe its a faulty cathater as the balloon that keeps it in place keeps deflating, he is in so much pain and is so distressed ive called the hospice they told me to give him paracetamol!!!!!!!! as the clinical nurse specialist will be coming out to see him tomorrow.

Is this normal? some advice please.

Thinking of you all and thank you again you are all amazing support and without you all i really dont know how i'd cope.