Brain tumours

A place for people affected by brain tumours or brain cancer to support one another, ask questions, and share their experiences.

Waiting for a diagnosis

HJBeee
Posted by

Hi,

Apologies if people think I have joined this group too early.

I am currently waiting to see a Neurologist. 3 GP's and an Occupational Health Nurse all think I have a growth in the Speech Centre of my brain.

This has only been going on since 06/09/2019. My GP sent in an Urgent Referral, an MRI and CAT scan to confirm.

The letter from the NHS came, I logged in and made an appointment. 10/02/2019.

So I walked in to my GP practice first thing on the Monday morning asking that my GP does as promised and sends more letters once I have an Appointment of any kind, to get it brought forward.

I rang the Booking Clerk at Gloucester Royal Hospital yesterday. That 2nd letter from my GP is unopened in the Neurologist's intray.

The waiting. How do people cope with the waiting?

Helen

buttercup01
Posted by

Hi Helen, waiting really is the pits. I cope by distracting myself. Luckily, I'm an avid reader so can get " lost " in a book. 

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
HJBeee
Posted by

Hi Buttercup,

I have distracted myself so far by planning for the worst. My pension pot is incredibly healthy thanks to a previous career in IT with one of the Big Four Banks.and I now work in Local Government who have been fab. If the worst came to the worst my pension would be released to me via ill health retirement even though I am only 53. 3 x salary for my son if I was still employed and die. My Social Housing Tenancy is a Legacy one, will be passed on to my 19 year old son, I have checked.

Now that I am off sick since yesterday with flu, I have time to make a nuisance of myself, have rung the hospital 2 days in a row and set my MP's office onto them as well.

It's most difficult though because of where they think the growth is. The brain is what makes us, us. If it's there, an operation to remove - what if that goes wrong. I would then be a burden to my son.

I have also found out who my friends are. Sadly, that's not my niece who I took on her first holiday abroad when she was 12, we even took her to Wales from England to sort out her Passport. It's not my parents either. They idolise my niece and are now welcome to her, frankly.

I daresay others of you have had similar experiences too. Colleagues and friends have been of more practical and emotional support than any member of my family.

akist
Posted by

How can they think you have a growth without an MRI ? I would also skip on the CT scan as you'll be blasted with a hell of lot of radiation (is it like 300 chest x-rays), and as far as I know the MRI is better for detecting cr*p in the brain and much less harmful.

buttercup01
Posted by

Dear HJBeee,

I know just how u feel re "the brain is what makes us, us".I had a secondary brain tumour in 2013. My job as an online cataloguer was very much brain work n I was devastated to be told. Luckily, I had it treated by  Cyberknife and am still here to tell the tale.

I'm sorry you've not had support from your family, especially your niece. But glad colleagues n friends have rallied round. You will find folk on this site supportive too 

Let us know how you get on having seen the neurologist.

Good luck! 

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
HJBeee
Posted by

I'm just going by the current medical opinion.

I've had to set my MP onto it now as it's been a month.

My understanding is that I won't get referred for any further tests until I have been seen by the Neurologist.

I was told yesterday that the 2nd letter from my GP is sat in the Consultant's intray unopened. To rule out a thyroid issue, and indeed anything else, I have had 11 blood tests done, 4 vials of blood. Everything came back negative.

HJBeee
Posted by

I'm just going by the current medical opinion.

I've had to set my MP onto it now as it's been a month.

My understanding is that I won't get referred for any further tests until I have been seen by the Neurologist.

I was told yesterday that the 2nd letter from my GP is sat in the Consultant's intray unopened. To rule out a thyroid issue, and indeed anything else, I have had 11 blood tests done, 4 vials of blood. Everything came back negative.