We Talk Brain Tumours

I just did everything I could to:-

1) Keep Ali as happy as possible
2) Stop her getting too bored or thinking too much about her condition
3) Help the nurses by taking on some of their burden

Pretty simple really.

Hi everybody, It's been a little while since my last post, so big hugs to the 'oldies' and a sad hello and welcome to the newbies.

Just a little update on my Dad. My last post mentioned that all treatment had failed and the next plan was for him to have pcv. Well, following another appointment he was told that the cancer is as big as before he had his op 6 months ago, so very very fast growing. However,  the team have decided that my dad's only option now is to have another op and to put wafers in if all is favourable. We were all completely taken aback-we know that the chance of having a second op is so minute, that it wasn't something we'd thought they'd even consider.

Took him for a pre op meeting Mon, where they have said they will try and keep him where he is (in terms of health) for as long as possible. He's still out jogging, walking and doing press ups (puts me to  shame and has made me realise a life style change is needed for me at some point)!!! He obviously gets tired very easily, but still manages to do it.

Anyway, he's going in tomorrow, with the op hopefully on Fri (if no emergencies come in). 

Don't know what else to say really-I know he's incredibly lucky to be getting this chance, just hope it goes as well as it possibly can. 

Love to you all x

TashaBtin,

Not sure i like being an oldie but will cope!  Sorry to hear dads GBM has decided to grow but its good to hear that a second debaulk will be performed and Gliadel wafers inserted.  Will keep fingers crossed for him and keep you in my thoughts for Friday xx

I love the mutiny,

love to all - today is very very warm and sunny, have seen it through the windows!!

Joanna xxxx

Tashabitn..So so glad to hear that your Dad has been given another op. Take heart from this..they would not be doing it if they did not think it was worth doing. 

Good news on the train tonight.

Cxx

Hi Mary,

I had my husband at home all through his illness and if I ever needed anything day or night I rang the district nurses. If I thought he needed an injection, i rang them and out they came. If he needed turning in bed to get comfy, day or night, i rang them and they would come out.

Dont ever be afraid to ring the  nurses out, they have to come, and are very nice and willing.

I can see you're having a rough ride at the moment and I wish you all the very best for a more settled experience.

Just remember, if ther's anything you need, no matter how small, ring the nurses out.

Good Luck, Minty.

Pam, how do you do it? You can manage to make me laugh and cry at the same time.

Thank you for your posts. I have, I think, managed to grow some litle buds... have succeeded in getting him cot sides for the bed and a nebuliser, and the district nurse has been and was most helpful, as was the community palliative nurse. I now have a selection of numbers to call.

I also got the GP to visit as Mac is miserable with a cough and a drowning feeling. He prescribed some stuff immediately and even dropped the prescription off at the chemist for them to deliver, so we had a better night last night.  Hopefully the nebuliser will help with this as well. What s really awful is that I don't think he's feeling very secure that he is being properly looked after.

Opps sorry JMS!!! You know what I mean! Thank you and to Catg too xxx

Pam-almost forgot to say, been thinking of your Tony. I'm a big Brighton fan (thanks to my Dad), season ticket holder along with my girls and we too play Hey Jude as part of a medley before kick off.  Kind of takes on a new meaning now when we're singing our hearts out before kick off. Thinking of you both, from one footy fan to another x 

Love to you all x

Mary, hugs to you. It's good you have got a few things sorted now. Hopefully you'll both have a better day today with the nebuliser and the prescription. You're doing the best you can, it's time for all the others to now do their best for Mac too. 

Tx

Hello Mary,

Please excuse me if I ask you questions that are a little personal, I only want to help.

Has the GP suggested getting a sample of sputum so he can prescribe the right kind of antibiotics? I know it's ikky, but if he sputum changes colour, Mac needs a much stronger one .....

I even had my own supply of the sterile bottles that I 'borrowed' from the GPs surgery.

If I needed to, I would drop off a sample (urine or sputum) ... and get the GP to send it to the Hospital. I thought ... the sooner we get this checked, the more comfortable my husband would be.

My Doc seemed to be OK with this 'arrangement' I made , no-one told me off for doing things my way.

Mary, (excuse me if I've got this wrong) ... did you say Mac has 'drooling' ? Our Doc supplied patches (hyocine) that helped.

John would drool, especially at night, then 'choke himself', then have a coughing fit..... but the patches we found really helped.

Pam, I think of you as well on this journey, and love reading your posts.

Take care x

Thank you, Minty. I shall remember that. I am learning to overcome my natural reluctance to be a pain <s>.   I have been struggling to get him comfortable myself until it occured to me that I shall be less than useless to him if I put my back out.