We Talk Brain Tumours

Morning All,

Yesterday when I did my walk to Tesco's I found half the car park taken up with a film crew, lots of trailers and lorries and minivans etc.  I got all excited, finally Tesco are going to reward me for being such a loyal customer.  Nope they didn't come to find me and do my makeup so once I had finished, I flicked my hair and left.......pfffffffffffft

Turns out they filming on our "New Look At Village Life!" yep that's how the new housing development was sold to us as lol (unfortunately we only have a little 3 bed place, not the grand detached 6 bedroom lots).  It's starring Jamie Winstone, daughter of the gravelly voiced cockney Ray.  Whenever I think of him, I see that bloody Optivita advert where he says "Well I aint gonna tell you what to eat".  A few hours later and they had taken over a street a few down from me and made it into a whole different place!  The film will probably be crap, it's called "U want me 2 kill him"......something along the lines of Facebook influencing a boy to kill his best friend or something like that.  Won't be surprised if its a 'straight to DVD' lol

So that was my little bit of excitement, oh oh oh almost forgot......wayward daughter came home and said that she has been moved into top set for Maths, she is working at 7c at the moment (I have no idea what that means I just nod, smile and say keep it up, we didn't have these level thingies when I was at school) but by moving up she could be at 7a by the end of year 9.  I am wondering if her behaviour at school is sometimes born out of boredom, maybe she is quite smart after all - just like her dear old Mum ;)

Love & Strength to all who want or need it xxx

AT THE GOING DOWN OF THE SUN & IN THE MORNING, I SHALL REMEMBER THEM. LEST WE FORGET x

I had a rather reflective 2 minute silence this morning while I was sitting in Starbucks looking out over the canal in the middle of Reading.

It's actually been quite relaxing to have the carers come in three times a day to sort Ali out.  I know who doesn't really like people come in and do the things that they do (and disturb her rest), but she's obviously more comfortable when they've gone.

Her GP came around today and promptly countermanded the medication that the other GP put Ali on earlier in the week (for the infected shunt site).  He's also prescribed some of her medication in syringe-driver compatible form as well as some Diazepam just in case it might be needed.

At least we are prepared for any eventuality.

Any tips for getting rid of deep-down bogies?  Ali's having difficulties in breathing through her nose.

Dear Pete

If your Alis breathing is causing her difficulty then phone the district nurses. They will be with you very soon. Dont worry about bogies, They will be able to help her breating asap. love jmd xxx

The nurses are aware of this problem as we talked with them today.  Ali's breathing isn't a big problem.  But you know how things are when you have a cold and stuffed up nose and you're trying to sleep through it, Ali's very like that.

She has infatigo in one of her nostrils, so I really don't want to be clearing things out with a cotton bud.  Doing that has worked ok over the past few days, but I'm concerned that I might cause abrasion and spread the infection further into her nose.

Ok Pete sounds like you got things under control then. Was a bit worried for you and Ali. Good nightl Try and gt a bit of sleep.

jmd xxxx

Good morning all,

I've now recovered from Dan's party last week. It was far too noisy, far too many people for me in my muddled state to cope with. I decided to leave quite early in the night and let the young uns do what they do best, LIVE.

Dan starts radiotherapy on weds for four weeks or so I'm told. He's incredbly relaxed about it. I have a friend who has recently had throat cancer. He and Dan had a chat about what he can expect.

Pete, thankfully you seem to have some order in your's and Ali's life. Your posts have been an important lesson for me. Seems I'm going to need to brush up on my assertiveness!

May you all have a very peaceful weekend

Anne.

Anne,

Very glad to see that Dan had a good night and enjoyed himself enough to eject you out of the premises.

With regard to the radiotherapy, be aware that it will most probably make Dan feel worse for a few months.    Radiotherapy will cause swelling in the healthy tissue around the tumour.  In other parts of the body, this wouldn't cause a big problem, but with the brain being enclosed in the skull, Dan might well experience some side effects (depending on where the tumour is, this might be drowsiness, pain, and/or personality/emotional problems).

There is always a chance (like with Ali), that there won't be a "lift" after the R/T treatments have finished.

However, it's great that he's talking about things with a fellow sufferer and has some idea of what to expect and doesn't have cold feet.

Hopefully, while the treatment is happening, you'll be assigned a Mac Nurse (if you've not already) who will start helping you work through any benefits you might be entitled to.  I've you've not, then ask when that will happen.  You should also be assigned an OT to help get the house ready for when Dan's treatment ends (and mobility aids, bed, etc).

My assertiveness has come from the fact that I've been with Ali and taking a very active part in her care ever since her diagnosis back in March, so I've been asking questions and learning and using basic common sense.  There's many areas that I just don't know, but I'm now learning how to step back and let the care team into our lives more often and do their thing.

It's going to be a tough few weeks/months ahead of you, but keep in touch with us here and we'll do our very best to offer support and advice.

Anne, glad Dan's party was as it should be, loud and late!    I was very lucky throughout the 6 weeks of radiotherapy.  I had no soreness, no fatigue, no nausea or headaches......just lost a lot of hair which didn't all grow back....not that you can tell from my profile pic, but above my right eye just under the hairline, I am fairly sparse there, just have to carefully comb the fringe about and use hairspray to keep it in place.  Make sure that Dan uses the Aqueous cream at night, so that the scalp is not too greasy when the RT happens, I was told it can affect it...but use it from day one - I did and didn't get any burns at all, if it starts to go red and then you use it, probably too late to be effective!  Being a woman and only being able to wash what hair I had (it falls out around 14 days or so into the treatment and from the entrance & exit area's!) with Baby Shampoo was a bit of a bugger but doable.  I think men find it much easier and probably just shave it all off, if Dan has a lot of hair, he might want to think about shaving it short or off before the mask is fitted, as its supposed to be very close to the skin and I found that when mine fell out all at the front (I looked like a cross between Andy from Little Britain and Max Wall) the mask was a bit looser.

Did try to link to my earlier message with this photo in it, but couldn't find a way to link to the specific post, so here it is again - that was me almost 3 years ago on the table with the beautiful lilac mask they let me keep, still toying with the idea of sticking fairy lights inside and using it as a lamp, if only it didn't clash with my colour scheme (although it matches my new airer lol)

Went out for lunch today with my two sisters, just a local pub lunch but it was nice to go out with them.  My youngest sister brought me a stuffed robin ornament for my xmas tree....they are my favourite birds :)

Love & Strength to all who want or need it xxx

Well, Ali has been asleep and mainly non-responsive all day long.  She managed to open one eye (her evil one) to one of the carers at lunch time, but that was it.  She even slept through mealtimes.  Liquid swallowing reflexes allowed her to swallow a few spoons of soup laced with tablets, but she clearly wasn't too interested in eating anything at all.

She's breathing fairly heavily through her mouth as her nostrils are all blocked up, but she doesn't appear to be in any distress.  She's occasionally moving her head and good arm around a bit, but I have no idea why.  No response to persistent and clear questions or request to squeeze my hand.

I've been on this train for long enough to be aware of what's going on.  We'll just have to keep an eye on her and see.

GP, OT, DN, Mac Nurse all coming on Monday.