We Talk Brain Tumours

Wow, you guys sure can talk! Every time I looked at my emails today I had more notifications about you all in here.  Even though I'm far from ready to accept it, I saw my doctor today and we both agree that I have sunken right back in to denial - as if now its getting so much more real my guard has gone right back up, its really really good to see that there is always someone here to talk to.

Your comments last night all made me think, but its the acceptance that I can't reach yet.  When I asked my doctor today how long, and what is likely to happen.  I cried when she said it is probably only a matter of weeks, but then I went back to work and back to normal straight away.  Is it normal to keep to-ing and fro-ing in and out of denial.  It scares me because if I can't get past it this time, in a few weeks its going to hit me hard.  I just don't know how I'm going to get through it, I get my strength from my dad.  Ever since I was little a hug from daddy is all I needed to feel better.  When I need that hug more than ever before, he won't be there to tell me it will all be ok, and hug me better.

Hi Victoria and welcome to the train. I know you dont want to be here but you will find lots of support especially when you are feeling low. Its is not a place that any of us wanted to be , but it has been a source of release and comfort when we most needed it.

I think you have accepted your Dad's diagnosis in many ways, because you asked your doctor how long and what is likely to happen. For many many months I skirted round that one.....scared of what i knew they would tell us, wanting to live without knowing. It will be your way of coping to get back to normal life at work. We all have a defence mechanism...we would explode if we did not. Sometimes i could not understand how we could laugh and talk about mundane things( and my two teenagers thought for a long time that it was wrong that we did)....but it is what we have to do to get through it.  You and your Dad obviously have such a strong bond and you are both probably trying to protect one another which is why you are trying to keep your guard up. Wherever your Dad is, he will be giving you strength today and in the future...because he will be in everything you think and do.

 

Love Cathi xx

When I look at him lying in his bed I cry. I cry at the thought of what is happening. But I can't imagine not seeing him there, to face life not seeing his face, or hearing his voice. Is it ever possible to imagine that before it happens? I guess there are different levels of acceptance. I cry because I know what is happening, but at the same time I cannot process it all and picture my life in the future without him there. I know there has to be an end but I can't see it.

Just to add to Cathi's excellent advise, I just want to say that you shouldn't read too much into the declared timescales.  Brain tumours work at their own pace and can defy rational logic.  The brain is a weird beast in that it can tolerate large tumours in some location, but be very sensitive in others.

Live for, and embrace each day as it comes.

You will find peace soon.  Humour is a great emotional healer, even in the darkest of days and situations.  My wife suffered so many indignities, but we made light of them by laughing at the situation (within reason).  It's like that scene in one of the Harry Potter films where one of the monsters is diminished by laughing at it - that's how we approach the cancer

Don't rush yourself, Victoria.  The cancer won't hurry, and it will give you time to adjust.

You've gone through acceptance (without knowing it, I suspect), and now I think you're starting to grieve.  We've all done this, and in a way it's an easier process to start while your loved one is still alive.

Your family will have been assigned a Macmillan nurse.  You should talk through your emotions and fears with him/her.  They can be a source of great support and information.

Tony's home, here's his first day:

9.30 I'm washed and ready to go to hospice.

9.31 Call from Tony, "I'm in the ambulance on the way". Sh!t! Oh well. Means I don't have to schelp to Southampton again. If everything else goes like that today I'm in for a pretty chilled out day. Perfect!

10.30 Tony arrives. Paramedics refuse to move him and I can't use the hoist on my own. Eventually persuade them to use a pat slide to get him on the bed, but it wasn't easy. Persuading them I mean, not moving him. Moving him was easy.

Decide that Tony should be with the rest of the family in the lounge,instead of the converted dining room next door so we move the furniture around to accommodate his bed. He can now see his tropical fish tank and the fireplace. Heaven. I've lit a fire and bought him new fish to celebrate his return home. Good move. He asks for his iPhone and speaker and starts organising his music.

11.00 Tony's parents arrive, without warning and plonk themselves on the sofa and stare at Tony. Tony continues to obsess over his iPhone largely ignoring them. Two cups of tea for parents. They witter on for a bit about nothing and then realise Tony isn't listening.

11.30 Tony wants food. Half way through soup two carers arrive to hoist him onto the commode. We wheel the bed back into the bedroom. I have to play 'third man' as there needs to be three people present.

11.35 Tony's old uni friend arrives with his wife. Two cups of tea for them. Two more for Mum and Dad. Crack a tin of biscuits. Back to helping carers with Tony. Wheel Tony back into the lounge.

Sit with visitors for a bit and chat. Tony obsessing over his iPhone.

12.30 Care agency rep arrives to talk through revised package of care for Tony. 25 page report - she's manually filling it in. 

1.30 Lunch for Tony. Sandwich and rhubarb fool. Whisky and lemonade. More tea for visitors. More tea for Mum and Dad. Sandwiches for visitors. No rhubarb fool for them, they're having biscuits.

GP calls to talk through Tony's revised drug regimen. One pill at a time!

2.00 Work friend arrives with his wife and a very boisterous 4 year old. Make tea for work friend, wife, uni friend, wife. They ask if boisterous child can have Coke!! Really? Mum and Dad leave. Wise parents.

2.30 Carers arrive. Wheel Tony back into bedroom. Hoist him up. I decide to stay in the bedroom with the carers. It's calmer in there.

3.30 Uni friend and wife still here. Work colleague's wife gone off to check out local stables - decides not to take child with her. Wise parent. Work colleague decides to take child to beach for a bit. Thank God! Child now eating massive cookie covered in Smarties. Tony wants one. Child won't share. Plumps for another whisky and lemonade. Tony goes back to iPhone. Now playing music really loud through speakers.

4.00 p.m. Tony has mild seizure. Everyone goes into the kitchen to give him privacy. 

4.02 p.m. Everyone returns from the kitchen as they can't think of anything to do in the kitchen. Seriously?

4.30 Parents arrive again. Plonk themselves down in front of Tony and stare. Tony asks if he can have his iPad and iPad speaker. Starts organising playlists on his iPad ignoring parents. More tea for Mum and Dad. More tea for uni friend and wife. Uni friend and wife now want another sandwich. Apparently it was a long drive for them. Work colleague comes back from beach. It's cold outside so that cup of tea would be really welcome apparently. Child had ice cream and Coke? Are you freaking kidding me????? Tony still tapping on iPad.

4.45 Carers arrive. Wheel Tony back into bedroom with four year old swinging from the side rail on Tony's bed. Hoist him up (Tony not child). I decide to stay in the bedroom with the carers. It's calmer in there. Child now bouncing off the walls and hits Tony's father continually in the face with a cushion. Work colleague reassures Dad that he doesn't mean any harm, he's just playing.

5.30 Uni friend and wife decide it's time to go. No sh!t Sherlock! Very difficult farewell as Tony was suspended in hoist.

5.45 Work friend decides to leave. Hallelujah! Start chasing child around the lounge at high speed in an attempt to get his clothes back on. They give him a bottle of Orange Fanta to placate him. Jesus H! Tony has another whisky and lemonade.

6.45 Work friend decides it's OK to take child home in his vest. Work friend tries to avoid the physical onslaught from child by distracting him with Hula Hoops. Shoot me now!

7.30 Work friend leaves. Phew. Tony has more whisky. Parents have more tea. Our children arrive home. I order a Chinese. I give Tony his night time medication. Parents leave. I feed Tony his chicken curry one spoon at a time.

8.30 One mouthful into my cold chow mein, daughter's boyfriend's parents arrive. 'Oh yes I'd love a glass of wine' (I hadn't offered). Carers arrive to prepare Tony for bed. He's STILL on his iPad.  Wheel Tony back into bedroom. Hoist him up. I decide to stay in the bedroom with the carers. It's calmer in there.

9.30 Warm up my chow mein and start again. Daughter's boyfriend's parents decide they want an official tour around our new house (that's just polite for nosy sods). 

9.35 Tour finished. Tony asleep.

10.00 Everyone's gone!! Hurrah!

10.35 On sofa with flip top head.

11.30 Just found empty biscuit tin behind sofa. I'm off to bed

No visitors tomorrow. None. Not one. Tony had fun though. He told me so and that made it all worth while.

Love to all my lovely carer friends.

Pam

x

Debs- we also have to wait ages for our results- we actually waited a whole month this time because of christmas and we had a word with our Macmillian Nurse and she has said she will chase it up for us next time. The fact that you had to chase your scan up this time I find pretty appaulling and that she had to tell a white lie to get you in so quick- wishing you a clear MRI as well as a first time insert for the contrast! You will be fine.

 

Pam- your experience with your visitors made me laugh, cringe, as also gob smacked to the lack of awareness of the way people have regarding being a visitor. I remember when my husband was in hospital after the operation, and one of our neighbours came to visit him and he treated him like my husband was there, he behaved like hubs was pushing the daises up already! He didn't stay as long as your visitors did! The friend that brought the child round.....I just can't believe peoples attitudes! People can be so insensitve and stupid. When you said it when Tony turned round and said ' He enjoyed the day' and you said it made the experience all worth while, I can fully understand you saying that! Its all about our loved ones isn't it? I hope you have a lovely day visitor free! :)

Well, things for us have coasted a long time on that even road of the roller coaster.....until this Monday just gone. Hubs has got a regrowth......we have to go to Oncology on Monday where he will start chemo on tuesday. Its just a small regrowth at the moment, so we hope the chemo will do the job. I have had my suspisions over the last few weeks, and so has he. As he said, theres nowt we can do about it. Just put our heads down, get on with the treatment and see what damage we can do to it with that. The thought of his chemo and steroids messing up his diabetes again is a daunting thought. But hey! Lets go for it! What has really made him fed up, is he would have had his license back in May...so near to that goal post! Its just one of those things!

Thinking of EVERYONE on here, including all the new people on here. We are the only ones that know what we are going through. Sending thoughts, hope and strength to everyone on either side of the journey. x

 

 

 

 

Pam, OMG is all I can say to your day .... I worked with under 5's and I think even I would have struggled with that child, although I believe it has more to do with poor parenting skills, sorry for being so blunt.  

I am glad you got through it and Tony enjoyed himself, albeit mostly with his iToys ;) and as you say, that was the intended goal. However, you are not only going to run yourself ragged, you will be eaten & drunk out of house and home.  I am not sure we could afford to feed everyone that visited everyday on our limited budget such as it is already.  Maybe I should start stockpiling BOGOF offers while I shop everyday!  

I am a little shocked and appalled at the lack of awareness shown by the visitors, no one even offered to make a cuppa, I am going to print off signs, "PLEASE FEEL FREE TO MAKE A CUP OF TEA/COFFEE" this is NOT a hotel or restaurant.  Too blunt again maybe lol

Julie, I am so very sorry to hear of the regrowth (small as it is) but am crossing everything and sending extra love, strength & positive vibes that the chemo will work.  The diabetes must add extra pressure with the use of steroids and I needed them for each round of chemo as TMZ makes my brain swell, rare side effect but was kept at bay with 2mgs of Dex a day for the 5 days.  What I am really sad about is the driving licence situation, I know how much he wanted his independence back.  I have never driven (well I've taken lessons) so I don't really miss it but I know what my husband is like when his goes in for a service!!!!!!!!

Here's hoping the TMZ kicks the beastie back into touch for a LONG LONG while yet.

Thank you to everyone for the well wishes for my scan, I fear the needle more than anything but that's because they struggle and I have had it put in my hand at another hospital and they burst the vein, very uncomfortable few days looking like HellBoy!!!!!!!!!

Victoria, you can just use us and abuse as and when you feel the need.  I believe you are accepting it, it just takes time for all the information to filter through and of course, we don't want to believe what they are saying, that's the truth of it.  I hope your Dad remains comfortable.

Love & Strength to all who want or need it xxx

Zanadu  Sorry that the news was not as good as expected but it is positive that it is only a small regrowth and there are worse things in life than having to let your wife drive! It is like climbing up a huge mountain and being knocked back every so often....you just have to pick yourself up and keep going.

Pam!  Lol and tears in equal measures. you have to put a big lock on your door and don't answer it to anybody who "just turns up". Don't make tea and sandwiches for anyone...you are not running a five star restaurant . If people dont like it..tough. I used to leave out tea coffee and tins of biscuits and anyone who wanted could help themselves.

People will not realise that they are not the only ones to come and see Tony. Give them something to do. Send them out for shopping ..get them to make food.  If you do have visitors use the time to go out or lie down. You need to conserve energy. It will be tiring enough with all the Carers in and out and meeting Tony's needs( and there will be many!) on top of lack of sleep. My sister in law told everyone a white lie ..... that the doctors had said that 20 minutes maximum for any visit..... It worked.

 

Love Cathi x

Pam I laughed so much about your day, you need to learn to manage the visitors.  As Cathi said get them to do something whilst there, they like to feel useful.  They can shop vacuum cook empty the washer even do some ironing.  I rarely fed anyone and they soon learned to bring things to me when visiting Paul.  I would disappear to another room and take a break when his friends visited, they knew where to find me if the needed me although one day they were so busy watching the football they didnt notice him have a fit in the corner of the room, Paul told me about it later, he was fine, they were embarrassed - yes i did have to tell them.  I enjoyed the visitors coming as they helped me so much and would help with Pauls care taking him to the loo even if needed

Zanadu - sorry to hear about the scan, but only a small change.  stay positive sending you positive vibes x

Joanna xx