We Talk Brain Tumours

Hi Martyn, we're all here for you, you know that.  Hope things are going ok with the Citalopram - remember, it takes time to work & can make you feel worse before you feel better (it did for me).  Love to you & Doreen xxx

Hi Everyone

I thought I'd better come on and update you just in case you were worried I'd been murdered or had been arrested for murder!

Well, firstly and, most importantly, we had the wonderful news that the results of Tony's MRI scan was positive and the brain tumour is showing signs that it has shrunk. Only ever so slightly, but nevertheless it is smaller rather than larger. It is the best we could have hoped for and exactly what we got and I cannot tell you wonderful it was to hear it. So, for the first time in a very long time, we have been a happy house. Long may it last.

With regards to his appalling behaviour. On Wednesday morning before the hospital appointment it continued, less aggressively but there was still an edge to his comments which ensured that we ended up having a terrible row.  It was obvious that every comment was designed to poke me with a metaphorical stick. However, by the time we'd got in the minibus and got to the hospital at 2.30 he was a complete tearful wreck and just fell apart. And even though he had been an absolute monster to me my heart just broke and all I could see was a scared child.

Of course, the news was so much better than had been expected and, I have to say, he is completely transformed. He has apologised for being appalling, has acknowledged what a complete monster he had been and begged for my forgiveness. He phoned his friend and explained that he had called him in the middle of meltdown and did not mean any of it. His friend Bob said that he had guessed what was going on and was glad he was now through it. We also sat together and talked through why he was behaving this way and tried to anticipate future events which may potentially stimulate a repeat performance.  We have decided that the only control we can potentially exert would be for Tony to start sedatives a lot earlier than he did this time. So that's the plan (combined with the obvious route of NOT DOING IT IN THE FIRST PLACE). He has continued to take the diazepam and has been completely chilled out since.

Respect I think you were absolutely right, he really was a frightened animal that had been cornered. I'm not trying to make excuses for his terrible reaction but, waiting to find out how long you have left to live, has to be pretty much one of the worst situations to find yourself in. As I've said earlier, he's not particularly emotionally strong so it was never going to be pretty. I hadn't imagined it was going to be THAT bad though.

The funniest part of this was that, when we left the hospital, we bumped into the consultant's secretary and stopped for a little chat. It was so lovely to be able to tell her some good news as she had been part of our journey from Day One and she asked 'Are you off to celebrate?'. Jokingly I said 'No we're off to a jewellers to purchase the apology gift for me!  Tony looked very sheepish and admitted he'd been very difficult these past few weeks. She laughed but then said 'Actually, it's funny you should say that but there is a lovely jewellers practically opposite here who is closing down and is getting rid of stock. There are huge discounts and you should head over if you're serious. Well, that was that. There was no stopping him! He went on and on and on about it. Of course, I resisted for as long as I could (30 seconds) and soon found myself staring down at a very very lovely 'apology' which is still sitting on my wedding finger next to my wedding ring. It has two rubies in it and Tony said that represents our two hearts which will always be together (I know, pass the bucket) but after the horror of the last week or so, I'll happily overlook the cheese and pick out the good bits.

I also must say that I don't believe any amount of jewellery excuses awful abusive behaviour and I only accepted it to help Tony, of course! He was very keen to point out that he does not believe buying me a gift is anyway supposed to represent an apology but more to try to give me some pleasure after a terrible terrible episode.

For my part, it's such a good feeling to know that the pressure is now off him and hopefully, should it start again, I will be a lot stronger and more able to cope. And, of course, ply him full of sedatives. 

Can I just say, I would never have got through this without my Macmillan family. Thank you all for being there. I hope it's the last time I need to visit this particular subject but if I do I know where to come. I hope by reading my nightmare, some of you guys out there can take some comfort - whichever way it comes.

Pam

x

oh pam you've made me cry at work!  So happy to hear of this breakthrough both in terms of the scan and in terms of the behaviour.  wonderful. x

Martyn - always thinking of you and Doreen. Wishing you both continued strength.

Naomi.x

Pete - your post touched me. When I was looking through mum's condolence cards, there at the very bottom was dads PCC (Preferred Continuity of Care) certificate. It was the last time he wrote anything (May) as after that he could no longer use a pen. He was writing with his Hospice nurse about the adverse effects his tumour had had on his life. He wrote "I used to look forward to seeing my grandchildren and spending time with them was my favourite thing to do. Now, their visits tire me and it breaks my heart to see the hurt and bewilderment on their faces as they struggle to understand what is happening to me". Even thinking about it now makes me cry and I cried for three whole hours after finding it. Something as seeing his handwriting shook me to my core.

Anne and Ilowe - dad's right leg (his tumour was on the left side of his brain) started to swell about two weeks in to his treatment. The swelling continued for about three months after his treatment ended. They ruled out dvt and it was put down to a side effect of the treatment.

Pam - such lovely news to read. I am so pleased for you. Everyone deserves a break on this train and I am glad it is your turn. Enjoy every moment of your good news.

Love to all - I don't post much now but I often come to read your stories and think of you all often.

Naomi.x

IIlowe. Am going to try to post again. Had no luck yesterday. You mentioned your sister has leg cramps and trouble with sleeping. My hubs was the same when he was on his chemo and steriods. I read on here that someone recommended Tart Cherry Juice which you can buy in capsules or juice. Its got various healing claims however It helped very much with both cramps and sleeping problems. I bought it in the Health stores. He doesn't have any problems now.

Pete- Thinking of you as you go day to day. Thinking of EVERYONE for that matter who have lost loved ones recently. Particulary as we head towards christmas. you take care all of you.

Debs- I love your pictures. All of them.

Pam- I am so thrilled to hear your news. Its so difficult because your loved one looks the same- its the personality that makes you question- where is your loved ones character gone? i hope that your husbands tumour continues to shrink.This is a wicked wicked diease.

Thinking of you all.

Zan.

Phew Pam,

When I woke up in the middle of the night, I was thinking about you! I must admit it did make a change from my usual worries.

I am so pleased that things turned out like they did.

 My goodness, you both had a rough time of it the other day, mind you some of us can get into that sort of state without the dreaded all consuming cancer!

Good luck with your move, and hang on in there. He loves you really, you know that.  But  being human, he will push and push and push!

Take care of yourself and Tony,  and take time to talk to each other.

Lots of Hugs

Respect

XXXXX

 Ps I hope Zute is having a fantastic time!!!!!!

Good morning all and thank you Naomi as always.

Things about the same now and the community nurses have re commenced visiting after 12 months absence.  One question please. Where do I find my message section now? Before the change I just clicked on messages and went into private messages. There doesn't appear to be that facility now and I have to go into friends and send from there, but have lost the continuity of messages to the same person, if you understand what I am trying to say? If I get an email with a message within from Mac, it does say you can reply to the message, but that comes back from Mac telling me to visit the site and reply from there! Am I being particularly thick as usual??  Love to all. Martyn XXXX

Hi Martyn.  Good to see you're getting some support again after such a long time.  If you need a supply of duct tape and handcuffs, just let me know...!

As for the private messages, just click on the "Community Home" link at the top of the screen and it'll take you to where you can see your private messages.

It's not ideal, I know.  But it works.