Jo’s Story

The day that changed everything.
At 09:30 on Monday 29th September Jo and I are sat in Clinic 1, Queen’s Medical Centre (QMC) Nottingham. In the room is Mr Stokes, Brain surgeon, and two Macmillan nurses.
In a casual but matter of fact way, Mr Stokes says that last week a group of specialists had discussed the evidence from the MRI and that Jo has a GlioblastomaSHIT!From the small amount of research we had done, we knew there were 4 types of tumour - Glioblastoma is the worst - most aggressive type there is.We are told that this is non-curative and inoperableSHIT again.Prognosis: 6 - 18 monthsSHIT again… and again

Available options are:
1. A partial removal
2. A biopsy only of the tumour - with the biopsy being the suggested route as due to the location of the tumour it was not possible to remove it all and a partial removal would be dangerous.We decide for the biopsy which is completed at QMC the following Monday with many samples being taken, some of which have gone to Oxford University for research purposes.Fast forward Friday 7th November and Jo is having her radiotherapy mask made (this is designed to prevent Jo from moving while undergoing the radiotherapy)

The start of daily
Chemotherapy and Radiotherapy.

Wednesday 19th November and the first Chemotherapy drugs are sat in front of us.

The next 6 weeks involved daily trips to the hospital for radiotherapy, daily chemotherapy (tablet form that can be taken at home) and weekly blood tests followed by consultations with the Dr. and Macmillan team.

Christmas came and went - didn't ready realise it was there with everything else going on.Then, 31st December the final Radiotherapy session concluded and the mask came home with us - where is stays in a cupboard out of sight.New year, new beginnings ?
No, not really.....
New Year and new start to the way we live our lives.We get January off - a well needed rest from the draining treatment.Then the new regime:
Week 1: Blood test, consultation with the Dr and 5 days chemotherapy
Weeks 2, 3 & 4 REST
Then repeat.

Our new life together

It's about making memories

Our lives changed on 29th September 2025.
After many tears, silences, discussions and more tears, a strategy was born.
We were not going to talk about Cancer or the tumour - it was now called 'Norman' or 'TFN' (Twat face Norman) for short.
TFN is not going to stop us doing things, on fact the opposite.
Yes, we have limited time left together and things will only become harder to do as time goes on, but, it's time to do them now.
Bucket list created and we have started ticking things off.

It's also about trying to help others.
Help everyone on the same journey (the person with the tumour and family dealing with it - they are all on the journey together) understand what's going on, helping others in the same position understand what happens and how the treatment can affect you all.
Understand hair loss, wigs, how radiotherapy and chemotherapy affect you, the side affects of treatment and the side affects of a Glioblastoma.For Jo, side affects are loss of balance, special awareness on her left side - walking into things, not being able to put her hand where she thinks it is, not knowing if that knife, fork, pen is actually in her hand. Not having control over her hand.
Having her driving licence revoked after 35 years driving and having to be driven everywhere.
Not being able to walk unaided.
In the past Jo has completed two moonwalks (26.2 miles walking overnight in London raising over £2000 for Breast Cancer Charity) but now struggles with anything over a mile on a good day.
How this affects family - giving up time do the shopping, cooking, caring for your loved one, organising all doctor and hospital appointments and transport, organising pills - there are alot of them and then need to be ordered, collected and organised so that they right ones get taken at the right time - and to continue looking after themselves.
Side affects differ depending on the location of the tumour - some lose eyesight, hearing - and everyone will be different.
We can only speak about Jo and how TFN affects her (and me I guess)
This is affecting BOTH of us, we are 'Team Proctor' all the way for as long as possible. TFN has picked on us and we will not let him win.