We Talk Brain Tumours

Hi everyone.

Sorry to do this as a reply. Haven't figured out how to work the site yet.

I could do with some advice. My husband was diagnosed with a brain tumour on the 28th May this year and was lucky enough to have an operation to remove the tumour on the 17th June. The surgeon was as confident as he could be that he had managed to remove the whole tumour and discharged my husband the morning after the op, a first for the QMC. We didn't get the opportunity to have the op explained in any great detail as they wanted him to enjoy our daughters wedding on the 11th June and then he was rushed through so quick we didn't get the opportunity to talk to anyone about what to expect after the op. His diagnosis and treatment has been spread over 3 hospitals (King's Mill, City and QMC) which also complicates the communication channels.

He is now being seen at just the one hospital for oncology follow-up (City). The Oncologist was pleased with how the op went and said they would leave the decision as to whether he would need radiotherapy as well until after the MRI scan 3 months after the op. He went for the MRI on the 28th September and things didn't go well. They were unable to find a vein to inject the chemical used during the scan and had to admit defeat. We then saw our oncologist on the 7th October expecting him to recommend a canula be fitted on the ward so that the scan could go ahead. Instead he looked into my husbands eyes (sounds romantic doesn't it?), felt around his neck and listened to his chest and then said they would leave the scan for the time being and try again at the six month mark. He then got up and left the room without a goodbye and not giving us the opportunity to ask any questions. We were dumbfounded as this hasn't been his normal manner over the last two years (the brain tumour was secondary cancer).

We are now left without knowing if the op was a total success or if there is still some cancer left that would benefit from radiotherapy. We also don't know whether it is normal for his reasoning powers to have been affected so much, he is struggling to work his way through problems that would not have been an issue before and he has problems with co-ordinating his grip on things if he is distracted by something else which could potentially be dangerous as he loves cooking. Are these symptoms normal following a brain op or could they be symptoms that the brain tumour wasn't fully removed and is growing again.

We are totally confused and don't know what to do for the best.

Guess we just need reasurance.

Love and best wishes to you all.

Lorriann

Hi Lorriann,

Sorry you have been left with so many questions.  The most important thing to know is what you are dealing with.  Have they at least told you what sort of tumour it was and its grading?

Without that its hard to make any decision, the fact they are not too concerned about the timescale for MRI etc would lead one to suspect its a low grade brain tumour, however it really does depend on the pathology report in my view.

Others may have some better advice.

Hi Guys, sorry for freaking out, if icould log onto FB under a different name like CH suggested then i would give it a shot, i would just rather people we know not knowing it was me as i know there would be a lot of people just being nosey.  Anyway i'll give it a go and keep you posted.

MollieXX

Hi Lorrian,

My wife had her debaulk at the QMC, radiotherapy at the City and attends oncology clinics at the City, she recently had an MRI scan at the QMC, we live in Newark. When we first started the oncology clinic we used to see a consultant oncologist, initials MS.  We found him rather gruff and less than forthcoming with answers. I then switched us to see one of the visiting nuerosurgeons from the QMC who help with the clinic. The one we see mostly Mr P B is marvellous and will answer any question and is never in a rush to terminate the appointment, likewise Mr D M who occasionally stands in for PB.  We have their secretary's direct line should we ever require help or advice.  You have a right to know everything and it is their duty to answer your questions to the best of their ability.

Unfortunately I have had to hide my profile due to some spammers we have been getting on this new, very insecure site, but if you wish to communicate further we can do so here or we do have a discussion thread within facebook. There is another poster Ali24 who's mother attends the City also, she posts both here and on facebook.

Best wishes to you both.

Martyn.

Hi Martyn, i've just joined FB as Mollie Smith how do i find you guys?

MollieXX

Mollie,

There are 247 Mollie Smiths on facebook, give me a clue which one is you?

There is one holding a pussy!  is that you?

Hi Martyn, i'm the one at the top above the pussy, can you request me as a friend as i don't know what i'm doing yet!

Ho, I'll be there immediately.  Keep holding your pussy until I find you!

XXXX

Mollie,

I have sent you a friend request and suggested other also do.  When you have accepted I will send you an invitation to the Mac group.  We'll get there soon!

MartynXXXX