We Talk Brain Tumours

Hi Naomi

No, not at all. Thank you. I will add it to the carer's routine which changes constantly and now includes moving his body to prevent bed sores, sitting him upright to keep the fluid off his chest and massaging his stomach to keep the digestive system moving. They come four times a day and I figure that if they add it to their care plan I know that it will happen at least four times a day. Then I do extra in between times. Seems to work. His chest is clear and he has no bed sores.

How our routine has changed in a few short weeks!

He went to the loo today for the first time in over a week, poor thing. I decided to be daring and hoist him without carer supervision. Our son Charlie helped me, I wasn't alone. He was in so much pain in his stomach, it's not like there was much of a choice. Anyway, mission successful and he is now sleeping the most peaceful sleep in a long time. I think the whole process exhausted him. But I can tell just by looking at him that he is not in any discomfort and is sleeping a sound, peaceful sleep. I hope his dreams are all lovely. Long may it last.

Can't help wondering where our lovely Debs is though. I hope she's off doing something fantastic and is just too darned busy enjoying herself to bother with us lot.

Pam

xx

Hi all,

Jill I used to read your posts and please accept my condolences at the loss of your wonderful sister Sue, she fought such a long fight may she now rest in peace, my thoughts are with you and yours and this sad sad time.

Pam, G had terrible fluid build up to the left side of his face and as Naomi says, this was helped by constantly turning his head. x

Debs, hope you are ok x

Ange X

Good Morning my lovelies,

Sorry I've been absent but such is the life of such a popular person like me (I bloody wished lol).  Thursday was fantastic my meeting with my lovely oncologist was fun - they had a poor nurse learning to perform some neuro strength/weakness tests and I was the guinea pig.  I don't think the nurse learnt much through mine or my oncs laughing.  I probably would have been officially marked down as a drunk not a brain tumour patient, with my test results.

Then she dropped the bombshell, she doesn't want to see me in 6 months in between scans, but she will see me after my scan next February.........oh I felt so unloved (but in a good way).  Of course I can contact my nurse Kim or oncologist at any point if I feel things have changed.

We then headed off to Theydon Bois underground station, a lovely little station looking very pretty in the snow.  We got to the Royal Albert Hall quite early and decided to eat in the Consort Cafe, posh bangers & mash for me and posh pie & potato wedges for Tony. I had realised in the morning that another lady I have on facebook that I met on this site (not BT but BC) was also going to see the same show as us.  We tried to meet but such is the layout of the RAH we went through a different door to our beautiful box seats.  However, she did get into trouble with two stewards by shining the light on her mobile to get our attention from her stall seats.  I stood up and gave her the royal wave and we laughed via texts throughout the show.  At the interval we had drinks brought to our box and I actually indulged in a gin & tonic, first alcoholic drink in over six months.  Went down rather nicely.  The show was SPECTACULAR, I can't describe how fantastic it was.  As a teenage gymnast & trampolinist I really appreciated the upper body strength and dedication to their arts that the performers must have to be as good as they are.

We came out of the show to ........... HEAVY SNOW in London.  Quick dash to the train station and thankfully the snow dwindled the nearer we got to Theydon.  We finally got home around 12.30am and my alarm went off at 7am to get the kids up for school.  Oh my bloody gosh my head was banging like drum.  I felt like I had the worst hangover EVER! That's it, no more alcohol for me, although I do think it had more to do with the fact that I was just plain bloody shattered.  It was a full on day, rushing here, there and everywhere.....the excitement etc

Friday I just lounged all day.  I didn't even go to Tesco's but stayed on the sofa with a cosy fleece throw watching some catchup tv.  By 8pm I actually felt better, or was it the six odd paracetamol - who knows & I cared less.  Early night on Friday and yesterday I was back to my usual weird self.  We had a lazy family day, I made pannini's for lunch and we had a Chinese Takeaway delivered for dinner (yummy!).

Today I am off to my little sisters house in Shoeburyness to celebrate my middle sisters birthday (she lives in the same street as me).  We will be having homemade lasagne and profiteroles as dessert (my little sis makes brill profs) and no doubt play a few games and be silly.  Good times all round and I will escape the torrent of "Whitney Houston" news flooding the internet and tv.  I am a bit harsh but have more sympathy for the children/family left behind than those of addicts.  Just myy opinion, a lot will disagree but I got fed up with the "Amy Winehouse Month", where all you could hear or see was news of her.  Talented people yes, a waste of life yes.........but as song lyrics say "that's just the way it is, some things will never change".

Haven't read back peeps cos I should be in the bath and getting ready to go out but I am waiting for Tony to finish cooking me a sausage & egg breakfast muffin, but I am hoping that all my friends on here are doing the best they can considering the circumstances.

My love & Strength to all who want or need it xxx

(ps, I've not proof read it, so forgive by brain to finger mishaps, it all sounded good in my head)

LoL Debs! A year! That is the most wonderful news. What  amazing hope you give to others on this site....that and ending the diets of everyone with your  food blog. A woman after my own heart!

So happy for you.

Cathi xx

Running from memory here, so forgive me any oversights...

Jill, so sorry to hear of your sister, but you can be reassured by the fact that she had the best care possible and was comfortable, we can ask of nothing more.

Debs, it's delightful news that we get to keep you for another year.  You truly are the captain that keeps our ship afloat.  We love you dearly and we're all so happy and proud of you.

Pam.  I'm probably replying too late here, but don't forget that puffiness can also be caused by wasp or bee stings, or even mozzies.  I guess it can't hurt to try an anti-histamine.  But then, I'm sure the situation has resolved itself by now.

Naomi.  It's good to see you're still here with us.

Joanna. More strength to you.  I know things are hard for you, but stick with it, you're doing a wonderful job.

Martyn.  Hope you can read this and that you're coping somehow.  Know that you remain in our thoughts, even though we talk about other things.

Cathi.  You've reminded me, I need to pick up some more booze...!  :D

Not sure where I got this reputation from.............but probably all true! Given up on the virtual stuff

Cxx

Dear Jill,

So, so sorry to hear your sad news about Jill.  She had fought the good fight for so long but now she is at peace.  Send you ((((((((((((((((((((huge hugs)))))))))))))))))))))))) across the Pond.

Sue xxxx

Jill, please add my condolences to those received already.  You know she is in no more discomfort and is at peace.  Take care of yourself

Debs, you should be writing a diary to publish, would be fabulous reading.  So glad you had a good day and to be rejected from hospital for a full 12 months, made me cry happy tears for you.

Well done pam on using the hoist, we had one here but it never got used.  

Love to all

Joanna xxxx

So pleased to hear your good news, a whole year wow how fantastic!
Keep doing whatever you're doing its obviously working.
I know what you mean about the deluge of coverage about Amy Winehouse/ Whitney Houston and even Michael Jackson, after all as someone said to me to-day, they made choices, some aren't able too!

Have a great time to-day, save some profiteroles for me, you could I think probably drop them in on your way home.
xxxxxx 
xxxxx 

Debs! Phew! So relieved to see your post. We were worried about you!! What a wonderful day you had. So glad you have the thumbs up for a whole year! That's amazing. Tears of happiness at this end for you my lovely. Not sure about anybody else but reading your post made me really really hungry!! Big loves to you. 

Tony is very settled and wide awake today which is lovely as his godson is visiting this afternoon. I have asked the carers to move his head regularly and it seems to be a little more settled although the lump on the side of his eye is still there. I will not do anything until Tony complains of pain and, at the moment it doesn't seem to be affecting him at all. May this peaceful phase continue for as long as possible.

Wishing everybody a wonderful Sunday.

Lots of love.

Pam

x