We Talk Brain Tumours

Hi to any newcomers.. I've only been on this train for a few months but already appreciate we are in good but unfortunate company.

Debs,,bless you, always the comedian. Do you ever get maudlin, angry, panicked even ? God knows you've more than your share of troubles. Hoping everything goes well for you,

An update on the sponsored hike if anyone is interested. We are taking on a challenging walk around the Castleton Ridge in the peak District in aid of BT.UK on 17th March. It will be led by an experienced DoE expedition leader. We will be covering around 10 miles in total, with some " significant elevation changes.

The walk is classified as moderate, most peolpe would be able to do it with some training.I live in the Saddleworth area and have been organising local training sessions. A few people on this site have expressed an interest in joining us. If you're still interested in either walking or donating (we have a site where you can donate online) get in touch please.

Hoping everyone has a pleasant and peaceful week

Anne

Anne, do you have a link for this event?  It might be useful to start pushing it around to get some support.

Hi Everyone

What a crappy day yesterday was. It started bad and just got worse.

Firstly, I got a phone call from the hospital to say that St John's Ambulance were there and getting Tony ready to transport him to the hospice. I felt awful. I should have been there to pack up his things! I got the call as I was at a petrol station half way to the hospital! The mobile phone signal was so bad I couldn't ask the paramedic whether they wanted to wait for me to arrive or just meet them at the hospice. I took a chance and decided to head straight for the hospice. 

My satnav conked out on the way so I had to pretty much guess the rest of the route. I haven't lived down in this area for very long so am not familiar with any of the road signs. Additional stress I didn't need.

Well, the timing was spot on as I arrived at the hospice right behind his ambulance. I stopped the car to let the ambulance reverse up to the front of the hospice and that's when it happened. It just hit me like a train. That was my husband in that ambulance, my Tony being taken to a hospice maybe even the last journey he was ever going to make and there was absolutely nothing I could do about it. And I don't apologise for being dramatic, this is exactly how it felt. And I just couldn't control the tears. And the same picture of him keeps coming into my head (and has for a long time0. Every night he would walk through the front door from work, he'd shout 'Alright my love' in a silly voice, the dog would jump up and he'd stroke her and play with her for a minute then he'd walk into the lounge and kiss me on the head. Didn't think much about it at the time. But I can't stop thinking about it now. And I just couldn't stop crying. I felt so helpless. Like I'd let him down but I know I haven't I just can't think of a better way to explain how I was feeling. 

And I hate the hospice. I was painted a picture of beautiful landscape gardens and rooms with a homely feel where all are welcome and the staff are sensitive and Tony could look out of the window and see the gardens and the sky. Not like a hospital, nothing like a hospital at all.

In reality, he's in a room with three other men. Very much like a hospital. In fact more like a hospital than the hospital he'd just left. They've put him in a bed right opposite a man who must have hours to live. I'll be surprised if he's there tomorrow. And that's Tony's view. The view from the tiny window to the left of his bed is a side view of the brick wall on the next building. There are lovely gardens but the beds aren't positioned in a way that makes the most of them. And the 'sensitive' nurses walk in and out of the wards chatting in really high voices, without a care for the fact that the patients are sleeping or may not want to hear what they watched on telly last night. And the visiting hours are 2-8 and only two people allowed around the bed! Are you kidding me? Where's that hospice that allows you to invite everyone, the one where you can plan your own end?

The only difference I can see is the fact that the tea lady offers the visitors a cup of tea as well as the patients! Big deal! Oh And they have a day room with a massive telly. Woo Hoo!  I know hospices are only part funded by the NHS and must rely on charity but come on! It doesn't cost anything to talk in a respectful whisper. When I got back there this evening he was thirsty and nobody had bothered to try to give him any water. They even spelt his name wrong on his bed label.

The doctor came and I talked her through Tony's history - AGAIN! She said 'Wow, you remember so much' to which I replied "It's more a case of never being allowed to forget!". And right in the middle of this painfully detailed discussion/interview Tony had the biggest seizure I have ever seen him have. This one affected his face as well as his arm, leg and head. He stays conscious throughout his seizures and is usually calm but this one really upset him. And I had to sit there and watch again while this horrible thing ate away at him and I couldn't do a thing about it. I just wanted to scream 'Leave him alone!!!'. B@stard b@stard tumour. B@stard cancer. 

So I'm making it my mission to get him home as soon as possible. Even if we have to break him out. I absolutely don't care. He's not staying there a moment longer than he has to.

He didn't wake up much. His urine is very dark red so am not sure what is going on with that. When he does wake it's only a half wake and he's very uncomfortable and groans a lot in his sleep. He's so fuddled and half asleep that he got confused about whether he was on the loo or not and nearly did it in the bed. He's also very thirsty all of the time.

It's happening so alarmingly quickly now that's is frightening. Reading the internet about end of life symptoms is one thing. Seeing them play out on the person you love is quite another.

On the way home I drove to sit and look out at the sea and had a scream and a shout at the moon. It didn't make me feel any better but it helped me to control my upset for when I got back home to face the kids. 

As I type, I've just had a call from the hospice to tell me that they have moved Tony to a side room because his eyes are hurting in the light. Yet another symptom but at least he's now out of that horrible ward. 

The OT lady is coming at 10.30 a.m. to assess the house and work out what is needed for him to come home. So we're getting the process started.

With love to you all.  Here's hoping today is a good day. As some French philosopher guy once said 'You can't have good days if you don't have bad days. Good can't exist without bad' or something like that. Anyway, I'm owed a few goods days soon surely?

Pam

x

oh Pam,

It really is the most evil of diseases and when it hits you in the face like that it is the most horrific feeling isn't it that you can't describe.

My Dad was at home when he went, there was talk of a hospice - but it was an hour and a half a way! ( helpful!) they thought he had a few days but it turned out to be hours instead. My Mum was concerned that we wouldn't want to be in a house where our Dad died - but it was the exact opposite, I wanted him surrounded by his normal things. We had 1 amazing macmillian nurse who stayed with us for 2 nights, looking after Dad and us, I wil be forever grateful to her, she was brilliant.

I hope you will find it slightly calmer when he is home, to us it felt right and I'm glad we all decided it was for the best.

L x

Oh Pam, I just want to throw my arms round you and hug you tight.  The hospice doesn't sound much like others have experienced....again I guess this is down to postcode lottery too!  I hope you get Tony home, if you need any help with covert planning, I am more than willing to help (not that I have any spy/ninja experience).

Louise I have already told my husband that I want to be moved to a hospice because I don't want my children (13, almost 16, almost 18) reminded everytime they come home of Mum dying there.  I may well change my mind, especially if the hospice is not up to my exacting standards, think I may have to make a few undercover visits beforehand!

Anne yes I do have moments when the dark things come to torture me, usually just before an MRI and then between until I get the results.  However, I have found that humour has helped me greatly thus far and as long as I don't inadvertently offend anyone here (please know that I would never mean to) I think it can't hurt :)

Much love & strength to all who want or need it xxx

Hi Guys

The OT lady came today and assessed the house and she was pleasantly surprised at how little there was to do. We already have a hospital bed and the NHS came and built a ramp through the patio doors so that they can get him in and out on a stretcher. I've got three commodes and two wheelchairs!! She basically now has to order a hoist and a different kind of chair for the lounge as his rise and recline is no longer appropriate. She's advised that we move some of the furniture out to make it easier to move around the bed. But basically that's it.

We talked about any toilet issues and I've got everything needed for every eventuality. She says the order should take about three days at most so, if the wind is in our favour, he could be home on Friday. This would be wonderful!!

Am just off to pick up his Mum and Dad now and take them to spend the afternoon with him. They are both 89 and very fragile. It's bad enough to lose a husband but Lord only knows what's going through their minds, losing a child at such a strange age. Without wishing to create drama where none exists I do strongly suspect they will follow quickly after. To say that they worshipped the ground he walked on would be an understatement. Bless them.

Well, I hope everyone has a good day. Thanks for all of your lovely messages of support. It really does help to keep putting one foot in front of the other having you there with me.

Much love.

Pam

x

Pam - my mum and I can empathise with your emotions to be concerning Tony's arrival at the hospice.

My dad made the decision to die at the hospice fairly early on in his illness. He looked round it with mum and felt comfortable with being there. However, on the day the ambulance arrived to take him there (23 days before he died) it almost killed us all. As he was driven away, he turned his head (not easy at that stage of his disease) and looked back at the house. My parents were in the air force and lived in council housing for many years before they were able to afford their little house. It was his castle. I torment myself for hours wondering how he felt that day.

Like Tony, dad was initially placed in a four-bed bay. The first night he was there the man opposite died very suddenly only hours after being brought in (they are meant to be moved in to private rooms when the end is near). I sat with dad all day the next day and although he could no longer communicate it was obvious he was terrified having witnessed that. The hospice were wonderful though and helped dad understand not everybody has a traumatic death.

Dad was moved in to a private room three days later as he kept trying to walk and fell over, disturbing other patients. For us as a family - and in particular for my mum who has had heart surgery and can't lift - the hospice was entirely the right place for him to die.

I hope you get Tony home today and that it is a peaceful day for you both.

With love,

Naomi.xx

Pam - I wanted to add - when dad was initially in the hospice, Mum and I felt very strongly it wasn't the place for him as they seemed to have little understanding of dementia-type symptoms.

However, as his illness progressed I can only describe the nurses there as angels in disguise. They gave him dignity and choice and as long as I live, I will never be able to praise them enough. They operated a 24-hour visiting policy, children and pets were welcome, they had an amazing support team. Dad was never, ever alone (he was frightened at that point and was terrified of being alone) - one of the volunteers was always with him, holding his hand.

As a family, we received excellent counselling and great support when it came to allowing dad to be sedated. Nothing was ever too much trouble - on the rare nights we all went home they rang us every couple of hours to update us. My sister lives in New Zealand - she came straight to the hospice from the airport (a few days before dad died) and they ran a bath for her, laid out pj's and cooked her a hot meal.

I am so sorry for you that your experience has not been so positive. When you are feeling stronger, perhaps a letter to your local MP may be in order.

Has anyone heard from Julie?

Zoe - welcome aboard this train. The people on here are beyond amazing. When there is no-one else to listen, there is always someone here who will. And more importantly than that, they understand and they do not judge.

I cannot begin to imagine what you are going through. This disease is so cruel and even more cruel when it strikes such young people. You are only human and can only cope with so much. My dad's illness was diagnosed following a huge seizure and he fitted throughout the course of his illness. He was on phentoin for about six months but it became ineffective and he was given Tegretol instead. The six weeks RT/chemo left him exhausted, unable to sleep and suffering chronic diarhoea. He did two cycles of the 5 days on/23 off TMZ but for dad, the side effects were too much to bear and he decided to discontinue treatment.

Lots of love to all of you.

Naomi. xx

Evening everyone

Tried to get on here this morning and for some reason it would not allow me to post . Maybe I said a bad word somewhere... Got change of password and am now on again!

Pam. Hope things are better. As Debs said..its another example of postcode lottery. For everyone on here who has hated their local Hospice ..there are others for whom its a godsend. I too can remember travelling in the ambulance and leaving the house for what we knew would be the last time. I can remember the sights and most of all the smell in the Hospice. Mark was  the youngest there, and I was really glad when he was moved into a side room. The good thing for us was that we could and did stay there day and night for the last two weeks. On pull down beds and couches ..but it meant we could be there. We were encouraged to help care for Mark as we would have at home.

Sorry if I am rambling on...but the positive for me was that I could run and get someone who knew what they were doing at any time of the day and night for the first time in 7 months. How my doctor had explained it was,"it will give you the time and strength to love him and care for him "...because physically I was at my wits end. I would not have done it though if Mark had not been adamant from the beginning that it was his wish( because he wanted to protect our two teenagers). Like you I would have moved heaven and earth if he had wanted to come home.

Debs..you are an inspiration. Every time I put the tumble drier on I think of your lilac clothes horse! No appointment yet?

Zoe Welcome. It breaks my heart to hear of passengers so young. That in itself will give you the strength to get through this.

Anne..Has your sons hangover lifted? Your little walk is beginning to sound like climbing Everest to those of us physically challenged. Pete is going to run the 10 miles on our behalf!

Naomi..Good to hear from you. Martin you have gone quiet.... As have you, Julie?...hope things improving?......And happy belated birthday Joanna! Another milestone.

Love to all and those I have not mentioned...struggle to get back through the postings.

Cathi x