We Talk Brain Tumours

Hi all,

Such a lot of activity since I last checked in.

Julie so sorry to read about the bleed and deterioration. Gs tumour was also left temporal lobe and twice he had bleeds which left paralysis on right side. He did however regain a lot of use until his last weeks. You are doing a fantastic job. Hang on in there. x

Pam, I was so sad to read about your experience at the hospice. I can remember feeling exactly like you when the ambulance arrived with G. It just hit me like a sledgehammer and the floodgates opened, I didn't expect it. However G had a lovely room with its own garden and everyone/thing was amazing. We were encouraged to be there around the clock and G was never alone. It's awful that you didn't experience this and I hope that you get Tony home soon. x

Zoe, G had op then radio/chemo with temazolodine, I can honestly say, that apart from tiredness he experienced few side affects and coped really well. Good luck x

I've lost track of everything now so sorry if I haven't mentioned you but thinking of everyone coping with this awful soul destroying disease.

Bit confused re Pete's run. Is he doing the run naked and then a bungi jump at the end or just running in PE kit and stripping for the bungi at the end? Either way, I'll support you Pete (support prob not a good word to use when talking about naked running! )

Love and strength to all.

Ange xx

Sorry Pete. Did not mean to imply that there was a time to move off the train. Just that everyone moves on in different ways. Many of the much loved names we knew from a year ago no longer post and I was wondering if this is because it was their way of beginning to create a different routine. Your contributions are hugely valued and I know you will give support to all on the train for a long time to come.

C 

Jo,

I was diagnosed with a right frontal lobe AO3 in Nov 2009, total gross resection in Jan 2010 followed by 8 weeks RT & 6 cycles of TMZ.  Got my first MRI after a year next month (jitters).

Regarding steroids, in some brain tumour groups I have read a lot about Boswellia (its a derivative of Frankincense) capsules which can help with brain swelling but of course, this is NOT a substitute for steroids which alas have their place in our treatment.  I had to go on a short course 6 weeks after I finished RT and my brain decided to try and escape out of my skulls (good job my brain surgeon tightened the bolts well).  

I also had to take 2mgs of Dex during the 5 day cycles I was on TMZ, as I was one of the few that the chemo caused brain swelling to.  It wasn't severe, just caused some heavy headaches.  I didn't have to taper on and off with the chemo cycles and had no adverse effects.

I am sure your oncologist will be able to reassure about their usage.  Good luck x

Julie and Pam, consider yourselves well and truly hugged by me, I can't think of anything else right now but you are in everyone's thoughts, prayers and good wishes.

Had an exhausting but lovely day out in Canterbury today and as they say, the sun shone on the righteous for a change.  The weather was beautiful, one of my close friends has a daughter that is considering Canterbury Christchurch Uni for her teaching degree.  While she had her interviews we went off and browsed the cobbled streets of the city, very quaint!

Hope I haven't missed anyone, I find it hard that you only see the last post or the one you hit reply to and as we all know us BT patients have trouble remembering many things and what and who wrote what in which post is one of them for me.

Waving hi to you all and sending love & strength to those who want or need it xxx

Hi everyone

Julie sending you lots of love and strength. You and Pam are both doing brilliantly. Pam you sound so much like me . Stay strong love.

Debs you made me smile sssooo much lets hope those little critters, Buttercup and Damien elope soon and hopefully stay away.

Jo..... Chris was on steroids which were reduced until he didn't have to take any. that was back in Feb 2011. He has recently been put back on 2mgs since having his seizures on Christmas eve but hopefully they will reduce.

SSSSoo much activity  today ...

love and peace to everyone

Love Denise

carers as well as BT patients cant cope with remembering it was so much easier when you could scroll through and refresh names before posting hence i can't put many names as my brain is exhausted by the end of the day (and sometimes in the morning and afternoon as well).  I did laugh at the thought of Pete running the hike naked and then doing a bungee jump - that would certainly raise some money for BT!!  Its cold up North and there could still be snow on St Pats day!

Steroids are useful and I would strongly suggest using them if they are required, reduce the dose as soon as possible to the lowest required.  Paul stayed on steroids for the full 18 months - we increased them as required (often before a special event eg Christening, weekend away or Christmas, anything he really wanted to do) when we wanted to be sure he would be feeling his best and decreased afterwards, increased following a seizure for a day or so and decreased again.  Likewise with the insulin we increased insulin dependent on what he wanted to eat or as he became more sick after he had eaten so that he could enjoy himself as much as possible.

love and strength to all

joanna xx

Hi Everyone

I have a bit of a dilemma and wondered if anyone here has had anything similar. The children and I do not agree on what to do next so I thought an opinion from those also living with this would be the logical thing to do.

My hubby, Tony, is the most sociable creature on earth. Loved his friends. Has TONS of them. Loves organising get togethers, loves partying. We were always having barbecues, dinner parties, lunches, out at the pub, etc. It was lovely. Hard work sometimes but lovely.

When he got ill, he began sending out email updates every week or so bringing people up to speed with what was going on. He loved reading everybody's responses and loved the interaction, it gave him strength. His illness gave him an excuse to re-establish contact with some old friends that we had lost contact with and his circle of friends grew even wider. Having travelled around the world for much of his career he has friends all across the world - some of whom travelled a fair distance just to see him. When he was in hospital the room was always full of people. You could see how much it boosted him to have everyone there. Of course that was easier in London, not so easy now he's in a hospice in Southampton.

So, it would seem like the right thing to do to keep that up. To keep letting people come to see him. To let people continue on this journey with him. Lord knows they're all keen! I'm diary managing like a PA at the moment!

Unfortunately, Tony's illness is developing in such a way that he is now rambling incoherently for much of the time. He is deteriorating astonishingly quickly and not much of what he says relates to the real world at all now. He thinks that a TV aerial he can see out of his window is an aeroplane, he asks me all the time "Are we near the airport?". I got a message on my mobile that he left at 3 this morning saying that he'd been locked in the toilet in his room. At times he thinks he's at home, sometimes he thinks he's back in Abu Dhabi. We left him at 9 last night in a state of much agitation because we told him the Bose shop was closed and we wouldn't be able to go past and I check out some speakers he wanted to buy - the same as the ones on the wall of his room (there are no speakers on the wall of his room). I could go on, but you get the gist.

In addition to this, he is also almost blind now as the tumour seems to have attacked the optic nerves and he asks to be put on the commode practically every hour (he has to be hoisted onto it as he can't now transition from the bed, he is too weak). It's usually a false alarm but he gets very stressed out if they don't do it straight away. He's up in the hoist for no reason so much now. Bless. 

My dilemma is that, despite how much Tony valued his friends and wanted them all to be part of his cancer journey, I am absolutely sure the healthy Tony wouldn't want any of them to see him like this. I am beginning to seriously question whether there is any benefit to friends visiting now. The children think there is. But that would leave just family and his parents are 89 and are too fragile to visit too often and his brother is a complete hypochondriac and seems to have an excuse not to visit at every opportunity.  I think he's worried he's going to catch it. So poor Tony would be stuck with me and the kids and we are the target for much of his anger and frustration so don't always bring out the best in him. I certainly don't seem able to make him laugh like I once did. The children are adamant that things should continue and we should allow people to see him because it makes him happy and gives him strength but I'm not sure anymore.

And I feel wretched telling people that they can't come. I did it yesterday, immediately regretted it, called the guy back to say I'd changed my mind and he could come and then immediately regretted that! I'm all over the place on this one.

Anybody?

Pam

x

Morning Pam. Such a familiar situation. My take on it was that the friends that really cared about Mark would want to see him regardless..... and up until the end he always said yes when I asked if he wanted someone to come in. The only person he resisted seeing, was his elderly father who just sat and stared rocking back and forth. This spooked Mark...no wonder. He was a very private person but as his illness progressed  I was really surprised to find that he was accepting that his male friends would have to cope with his toilet issues if they took him out. I remember one of his friends saying 'whats the big deal...we are all built the same way and our bodies function in the same way". They were all getting used to his illness anyway because of the texts and emails that he would send at all hours of the day and night...some in a foreign language, none making sense and some downright worrying. They preferred to see him.

I always felt that it gave the family a break and a bit of respite ...even though my teenagers found it hard to accept the banal chat and even laughter around the bedside in the Hospice when their Dad was slowly dying, oblivious to what was going on. They came to accept that life continues and that this was everyones way of being with and including Mark even though to all intents and purposes he was not there. I supposed that this is the way things were throughout the ages. I did sometimes limit visits for my own sanity.

We too lost the optic nerve and the hoisting onto commodes became a fixation....but eventually it eases...although he would never accept the disposable nappy in the Hospice and would rip it to shreds with the one good hand even whilst in a coma.I found external catheters helped with the constant peeing. I am not sure why the toilet issue becomes such a fixation.......it must be because it is such a primal reflex and the one dignity that they do not want to lose. I remember a night where myself and my son were hoisting on and off the commode every half hour for 7 hours with no results.

You have to do what feels right for you Pam..and you know Tony better than anyone. Whatever you decide to do will be ok. You can only do your best.

Cathixx

Hi Pam

Pauls friends were a part of his journey, they visited regularly and helped with toileting, even carrying him when they needed to.  They loved and cared for him as a person and hated the disease.  Having them around was good for him and for me, on the day he died there were up to 20 people at the hospice, towards the very end they sat in another room and left my son and i to say the final goodbye but they were there for us immediately afterwards and i remain grateful for that.  We tried external catheters but Paul went into retention and had to have an internal catheter fitted which really helped and he was comfortable with this, we never had to use the hoist or had bowel issues.

Paul's sister found visiting difficult, she didnt seem to want to accept that he was going to die and each time she visited would say he looked better, seemed well or when is he going to come home?  It was strange to have to cope with as it was so clear to me and others what was happening and took me a while to realise it was her coping mechanism.

As Cathi suggests do whatever you feel is best, there are no rights and wrongs.

take care

joanna xx

A tough one that, My Dad was adamant he didn't want anyone else to see him while he was ill - I myself am jealous of those who's last memory of my Dad was one of him as he should have been.

I thought my Dad should see some people to help with his attitude when he was having treatment, but when it gets to a point when the fight can't be won i'm not sure myself if it helps or not. I totally understand though Tony's symptoms are completely different and if you feel the old Tony wouldn't want it then perhaps go with your gut instinct - will he be responsive to visitors? or will it confuse/agitate him more - this is something you need to keep to a minimum for your own 'peace' (i'm sorry i know that's not really an appropriate phrase - but you get what i mean) of mind too.

Maybe make a priority list?....let a few right at the top of list come and see how it goes? Or put a limit on it - if you have some idea of time frame, say we will be accepting visitors until this day - then after it will just be family with him.

It may seem selfish to some but you should be having as much time with him for yourself as you can get too.

If you decide against visitors or limit the numbers perhaps email them and explain how quickly he is deteroirating and - maybe they could send emails back that you could read to him?

I hope you find a solution you are all happy with.

Thinking of you xx

Hi Pam,

Reading your post struck a real chord in me. My husband sounds very similar in charachter to your Tony. He too did regular updates to all friends and relatives keeping them informed as to all that was happening. I took over this task when he lost his sight. As I continued with the updates, we received many regular replies and messages from friends and it was may daily task to read them out aloud and type up his responce. My husband and I, although not doctors, were both in the medical field and we both knew what to expect and what the end stage would be like. Weeks before he passed away, I asked his best friend to organise a farewell party for my husband. His friend, to whom I will forever be grateful to, has a huge house which had been adapted to accomodate the disabled. Nearly 50 of his closest friends gathered that day. In anticipation, I had increased my husband's dex substantially so that he would be able to talk a little and I acted as his interpreter when words became jumbled which was very often at this stage. Many of his friends were so distressed to see him like this but as my husband was already blind, he did not see the tears. He individually bid goodbye to each of his friends and even managed a few jokes with them. That day will always be imprinted on my mind. He sat in his wheelchair, was able to smile, eat his beloved chicken and demolish most of the desserts laid out. Most of all, he was able to say goodbye to his friends and they needed to hug him and even right a few wrongs. Champagne bottles were opened as my husband insisted that life was a celebration and we all made a toast to live life to the fullest. I placed the Champagne flute in my husband's  hand and raised it for him and he smiled at me and blew me an air kiss. Preciuos memories to remember.

After that day, we didn't see anyone, except the carers,nurses and GP. The last 8 weeks or so it was just my boys, his parents, his brother and myself. It was what we both wanted as we had discussed the matter before hand. My husband was a proud man and it was important to both of us that he be remembered as he had been and not the shadow that was left behind due to the illness. I continued with regular email updates to all our friends and relatives.

Sorry about the big ramble. I guess what I am trying to say is that Pam you know your Tony best. What would he want?

Love from Beedarsh