Notes from oncology neurology meeting

Meeting with oncology neurology team.

My mum has joined me in this meeting.

The staff present were:

·         consultant Dr Catherine McBain

·         social worker Diane Aldridge   0161 206 4820

·         Sara Robson who works for Salford Royal and Christie hospital.  07827955047.

We talked through my symptoms leading up to finding out that I had a tumour.  These are written on 24th June, if you want to have a look. 

We talked through what happened in the operation, and what they have found.  My tumour is Anaplastic Olgedroglioma.  

During the meeting the consultant received information that it does contain co-deleted 1p….   This means that it will respond to chemotherapy.  I will have both radiotherapy and chemotherapy.  I do not yet understand chemotherapy – I became too tired to take this in, so we stopped the meeting.

Radio therapy

This is “deep x-ray” treatment.  It will start 3-4 weeks from now.  Every day for 6 weeks, I shall attend Christie hospital for treatment.  The x-rays will be aimed at the remaining tumour for 10 – 15 minutes every day.

The effects of the treatment will be that the tumour will stop growing.

The short term side effects will be:

·         headache

·         nausea

·         altered sense of taste

·         possibility of underactive pituitary gland

The long term side effects will be

·         short term memory loss. 

This will become an ongoing condition that I will have to learn to live with.  I suffered from this prior to removal, so know for example, that google calendar will send me reminders of things every day.  I will get support from a psychologist to help me put other methods in place to help me adjust to this condition.

A mask will be used for radiotherapy sessions.  This mask will be made for me next week.  I go to Christies to be measured up.
 

Ongoing monitoring

I will receive regular MRI and CT scans.  These scans will be used to monitor progress and to assess the next steps.

Review meetings (Multi Disciplinary Team) take place every week.  My therapy will be reviewed at these meetings and I will be sent a copy of the review to check it is OK.

Salford Royal/Christies staff member

I was given a big pile of information, for example:

·         A leaflet explaining Anaplastic Olgedroglioma

·         Understanding Steroids

·         Understanding brain tumours (Macmillan)

 

Also

• brain tumour support group
• specialist brain and CNS tumour rehabilitation AHPs (I have no idea what CNS is or AHP!) This is a team of physios, podiatrists, speech and language therapists. 
• Brain tumour UK support services guide.

We asked for information for the children, and I am told that there is a really good Macmillan cartoon based leaflet for them.  I have not received it yet.

I let them know that I have filled in a referral for the Beechwood Centre, so that we can have some family counselling.

Social Services

I am entitled to apply for financial help and help at home, should I need it. 

I was given leaflets to look at:

• help with the cost of cancer (macmillan)
• Patient transport services

Alternative therapy

Dr McBain was quite dismissive of these treatments.  I explained that I was looking to balance radiotherapy and chemotherapy with a healthy lifestyle.  Dr McBain was positive about aromatherapy and reflexology, but nothing else.  I will research this separately.

Ongoing support

Alison Hope 206 2073   alison.hope@srft.nhs.uk

I let them know that no other support teams had been in touch eg community nurse, GP, occupation health team.

Herm holiday

Travel insurance permitting, I do have permission to go to Herm for a short break with Dave, Martha, Katy and Grace (cousin).  I will research this some point soon.  I cannot say whether I will go or not until I know the cost.  Guernsey is not NHS and I have to be prepared for needing a hospital.  In Guernsey there will be a charge.