We Talk Brain Tumours

Hi Steve,

Yes, 16mgs is a dosage they don't like to exceed.

I'm sure  we would all wish Michelle and yourself every best wish for the forthcoming treatment, please keep us in touch.

Susie,

Would you like me bring Vic along to yours and I can rub him on your chest? Although if the last time I saw you is anything to go by, I bet you're a size 0 now!!

Keith  (PlodB),

Your last post was on the old thread and you were just about to go for your 2 year check up.

I suspect like others that you are finding it very difficult to negotiate this new site and there doesn't seem to be any sign of the old one being returned yet.  Several of us have emailed Mac administrators in the past few days asking for an update, but no replies have been forthcoming. My last contact with Thomas of Mac was informing me that they hoped to return the old thread last Monday 21st September!!  It would be rather nice and courteous to be updated as to their progress.

I hope your meeting with the consultant was positive and look forward to you joining us soon.  Maybe your son might help you find your way around?

Best wishes to all,

MartynXXXX

Hi All

Finding hard to keep updated with everyone at the minute.  Hope everyone is keeping as well as can be expected, hubby had one of his episodes on Friday night not the gran mal seizure but the one were he is conscious but cannot communicate.  This lasted about 1 and half hours so not as long as last time i guess it is just something that is going to happen now and then (usually once a month).  Anyway off to Edinburgh for a couple of days Saturday so lets hope this weekend away goes smoother than the last one bank holiday weekend august.

Take care allXX

MollieXX

Hi Mollie,

I remember your description of the recent weekend away, fingers crossed that all goes well for you both this time.

GGMM,

MartynXXXX

Hi all, apologies if you know this info, but for those that don't............

Got a question for you. Are you aware that you are intitled to grants from different cancer charities?

My daughter has a social worker who has recently got her the following grants, which by all accounts are paid annually: Wessex Cancer Trust £100.00, Macmillan Cancer Charity £450.00, CLIC SARGENT (children charity only) £200.00. If you have not received this money please ask you support team, as the documentation MUST be filled in by a social worker. Let's be honest every littler helps.

LOve and Hugs to you all.

PEABS XXXXXXXX

Good advice Peabs. Hope things are OK with you both.

I have developments at work and have been sacked. It's very amicable and I see it as an opportunity for more time at home for a while. Odd feeling though after 25 years with a company but happily no arguments or bad feeling.

B is OK. This is his week off chemotherapy. Blood tests tomorrow before he can start tmz next week.

Still no info from Mac about the old thread.

Love,

CHxx

CH, sorry to hear about your job but like you say more time at home with B and Bluebell.  How long have you been off work?  just wondering as i keep thinking about when the time comes when  i will need to have a long period off, you always hope they will be quite understanding but you just never know.  I've worked for the same company for 16 years since i left school and they have been great so far but there's bound to come a time when things change.

Hubbys gone to work for a coupleof hours today, wants a bit of normality ( whatever that is these days)  Take care all XX

MollieXX

Hi all,

Feeling a little better today but still have chronic neck  / headache so don't know how long I'll be able to stick at this.  Poor Col had a 2 hour walk to the nearest dispensing chemist and back to get me the Tamiflu - I suppose they just assume everyone is able to drive - not easy when the driver is sick.  I don't think Vic trampling on my chest will help much Martyn - my ribs are sore as it is without the thought of that too!

Mollie, I have accepted you as a friend - clever girl for finding out how to do it - it used to be so easy!!

CH, sorry to hear about the job - I hope it doesn't add any more worries onto your shoulders financially speaking but at least it relieves the pressure of feeling guilty about not being at work for a while.  Are you entitled to any sort of redundancy package that will help you?

Toria, if you're there, thinking of you & your family xxxxx

Susii, Glad you are feeling maybe a little better. Poor Col.

Beware of train drivers brandishing Vick!

Mollie, It's yet another impossible question really. I think at a certain time you just know what you need to do. I can't explain it better than than that - but if in doubt, choose time I'd say.

Before bt I used to work 32 hours a week. I had 9 weeks off when B had the operation and daily rt. I went back to work after that  for 20 hours a week. I changed my contract. In Holland you are able to change your contract once every two years to what hours you like within some limits.)

I then worked 20 hours more or less OK from Sept 07 to June 09 just before B had the most recent operation. The last 4 weeks have been normal holiday until yesterday. It will be a financial reduction but one we can manage with redundancy etc. Time is more precious but you have to be able to pay the bills of course.

Love,

CHxx

Mutter, mutter, bl***y hospitals, grrr! Left home at 8.15 and because of horrendous traffic on A52 only just got to QMC in time for 10.00 am appointment. The fact that since we were last there they have closed the multi storey carpark and the temporary carpark was full didn't help nor did the fact that Paul walks so slowly and we had quite a long walk to get to the right clinic. we saw the neuro surgeon bang on time but then had to wait around for another 4 hours for ECG, bloods and checking over by a different doctor. Paul was getting really wound up by the time we finally went in to see the second doctor. The neurosurgeon explained that the it is a new lesion that has appeared on the latest scan. Because it is on the meninges, there is always the chance that it could be a benign meningioma but he feels this is unlikely in view of the past history. He explained that 1 of the ways a GBM can spead is that the cells can in effect track outwards along the needle site left by a biopsy and he said that the new lesion is situated directly above the original tumour and therefore he thinks it best to resect it immediately.

One frustrating thing is that there was some concern about the ECG which apparently shows an abnormality that was not there before so before they can proceed with the surgery he has to have a cardiac scan. The only time it can be done is tomorrow at 9 am so it's back  to Nottingham again in the morning. *sigh*

xxxxxxxxxxx

Good evening all,

This site is driving me mad. I have a friend request from someone by email! but can't find it in my profile anywhere.

I have just discovered messages from 2 good folk on my wall which I didn't know about, I didn't even know I'd got a wall.

I hope all is as well as with you all.

MartynXXXX