We Talk Brain Tumours

Sue that is literally two streets up from me, it really is a small world.  In fact I had been chatting on Facebook to a lady I met on here and found out she lived on Church Langley and shops in the Tesco's I walk to everyday for food shopping (and exercise as I no longer work)......probably walked right passed each other in the aisles!!!!

Naomi, I haven't seen my surgeon since I was appointed an oncologist, but I had Mr Brecknall.  I am back at Queens tomorrow to my oncologist just for an MOT (well 6 monthly checkup) I had a scan in Feb and am not being scanned again until next Feb - my first yearly = scary!

Well, I'm back from the hospital and Ali is responding ok to the saline and glucose and has started on the insulin.  She's still sleepy, but is speaking more and is more aware of what's going on.

Unfortunately, she seems to have problems in getting her eyes to open.  I thought at first it might be due to her eyes/eyelids being gummed up, so I chased up the medical people for some viscoustears to ease them. Unfortunately, it took a long time to get them prescribed and for the pharmacy to deliver them (seems like all hospital pharmacies deliver drugs about six hours after you've ordered them).

Anyway, the vicoustears didn't really have much of an effect by the time I left.  Hopefully, it's something that can be sorted out as Ali won't like having her eyes closed all of the time.

She is, however, being remarkably calm throughout all of this.  She managed with some help to pry one of her eyes open (no dryness or crustiness that I can see), she saw me with the pupil that poked out and said "Hello" to me with her dry sense of humour.

With the diabetes, we could probably get her discharged tomorrow. But, we'd like to get her eyes sorted out, so this may take some time if we can get the medical team to look into it.

Is this something that anyone else knows about here (I've not seen anyone mention it before).

Oh, on the way home, I must have lost concentration and managed to rear-end another car that broke in front of me. No injuries to either party, and the other car came off better than mine.  It looks as though the car that's taken Ali and I all over the country might well get written off - high milage and being almost 10 years old means it doesn't have much monetery value.

Pete - Are you okay after your accident ? Even relatively small accidents can shake you up. Makes you think when things like this happen, if it's not one thing it's another...something you can well do without at present.

Glad to hear Ali is improving. I am not familiar with the difficulty Ali is having opening her eyes at the moment, or why this may be happening, hopefully you will discover the cause, and it will resolved soon.

Kind Regards,

Elaine B.K.

Yes I'm fine thanks Elaine as is the other party, it wasn't a high speed accident, but my car is not too happy so might be written off.  In the mean time, I'll have to use Ali's little Micra.

Pete - as long as you are okay and still have some means of transport, that's the main thing.

We've had quite an interesting day. The physio came to see Dave today, to assess how he was managing to walk outside, he wanted to try him using a stick. Now what could be more harmless ? Somehow, Dave walked out of the front door, and managed to badly graze his leg on a plant pot by the door. It bled profusely and he ended up at the hospital getting it treated. As you know, with all the treatment skin becomes so fragile. Luckily, a neighbour was able to take him and she rang me at work to let me know what had happened. At the time I was tied up in a crisis at work..it's been a really tough fortnight at work and not easy at home either. Anyway, the important thing is Dave's still in one piece and at least seems quite alert and 'with it', tired now, but not suprising since he's been a bit busy today....I just wonder how long I can realistically continue to work full time, in what is a very demanding job and do justice to supporting Dave and making sure he is safe and well looked after. We'll just have to see how things pan out over the next few weeks, we'll sort it out one way or another...

Sending you all positive thoughts and good wishes, off to bed I think, with what looks like a lightweight and trashy book.

Elaine B.K.

well, it's only been a couple of days since i've been on here and soo muich has been going on.  Everyone is so busy I just hope you all managed to get some u time.

Things have been good here with Nick,  more back in the room and back to himself but his mobility is still really poor,  just don't know how we will cope next week when I am back at work as he still cannot get out if bed by himself let alone do anything else.

Had a really s&*t day today,  took my dog to the vet for an MOT and have to take her back tomorrow to be put to sleep.  She's 15 so has had a good long life.  Not that easy to explain to my 11 year old who has been heart broken all night. Why is it just when it feels like things are starting to take a turn for the better something else happens.  Well at least it's not with Nick this time!

Pete - I do hope that you are ok after your car incident and I hope that Ali is responding well to her new meds

night all - x

Hi Pete saw you post about Ali's eyes, my dad had this problem almost as if his lids were stuck to the eye ball, visco tears did not help but lacri lube did, it was a bit greasy think thats why it did the job, hope that helps xx

Oh Liz :( I hope things went as well as they could have gone at the vets. So sad when we have to say goodbye to pets as they're like our children really {hugs}

Pete - I do hope things are going well with Ali and that you manage to get her out of hospital soon and home with you where she belongs.

Bit of a crappy day here. Kids have reached new levels of boredom and seem to think of I have a money tree growing in the garden! Mum text me after lunch to say dad has fallen over again twice today and that is back to sleeping sort of 18/20 hours a day again. It's so cruel, is it not bad enough this disease has robbed him of his mental faculties but his mobility too???

I'm feeling bitter and p***ed off so will end this rather maudlin post here! Love to all, hope everyone is having a good day.

Naomi.x

Has anyone on here heard from MrsSG recently?  I have been thinking about her and wondering how her husband was?

Hi SusiiQ and Debs,

This big world is getting smaller as I come from Cheshunt when Cheshunt was rural, the A10 was a one track road and not junction 25 on the M25!

Harlow was my stomping ground for shopping many moons ago - I moved to Lincoln tens years ago when I had my mid life crisis and got fed up keep crossing the M25 to get to Bulls Cross to go to work.

I used to work for Lee Valley Park (20 years) who are the Authority running the facilities for the Olympic Games - apparantly the water rapids are at Waltham Abbey.

It was a fantastic move for me as I left LVP in the June 2001 and met Steve in the July - it seems so unfair and crual because as you know, GBM IV took him away from me in August 2010, makes you wonder what life is all about - you get your glimpes of happiness then it is taken away so quickly.

Debs - as I have said before - you are an insperation and so brave to come on here and to helps others.

With regards to high sugar levels - in our experience - like your husband SusiiQ, Steve was type 2 diabetic on Gliclazide and Metformin and became insulin dependant as the Dexmethesone puts up the sugar levels.

Steve was still type 2 diabetic and only insulin dependant because of the steroid - the insulin helps you to control it better at home.

Sadly, when we came to the end Steve's sugar levels were massively high and they put him on a syringe driver to bring it down.

By then, the chemo had done its worse to his poor body and Steve had no resistence anymore.

The main thing is to stay positive and fight it all the way and never give in.

Sending you my love and support

Take care

Ann x