Jo’s Story

Monday 29th September
The day that changed everything

At 17:30 Jo and I are sat in Clinic 1 at Lincoln Hospital with Dr Solinas.
He doesn’t quite know how to tell us this, as he wasn’t expecting the recent MRI to show anything, but he can see a tumour on Jo’s brain - SHIT!
He says that he will be referring us to QMC ready for the Friday MDT (Multidisciplinary Team - a group of specialist doctors, nurses, therapists who collaborate to develop tailored patient treatment plans, particularly in cancer)
Jo also has a full body scan to see if she has any other tumours – none show up.On Friday we get a call saying that after discussions at MDT, Jo has been booked in at QMC, Nottingham for 09:30 on Monday 29th September.Early start on the Monday for the journey to Nottingham and at 09:30 Jo and I are sat in Clinic 2, Queen’s Medical Centre (QMC) Nottingham with Mr Stuart Smith, brain surgeon, and two Macmillan nurses - immediate thoughts are not great.In a casual, but matter of fact way, Mr Smith says that last week the MDT had discussed the evidence from the MRI and that Jo has a Glioblastoma.
SHIT! againFrom the small amount of research I had done I knew there were 4 types of tumour with Glioblastoma being the worst, most aggressive type there is.We are told that it is inoperable - BUGGERWe are told that it is non-curative – SHIT and BUGGER! - again.Added to this was the prognosis…. 6 – 18 months SHIT, BUGGER and a few more words that I won’t write here.

Here is the tumour highlighted in yellow

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 is not possible to remove it all and a partial removal would still be too dangerous. Samples taken can also be sent to Oxford for further investigation if they can get enough. After that the treatment would be radiotherapy and chemotherapy but this will be confirmed after the biopsy results are back.The biopsy is booked for the following week and we grab some lunch at the hospital where we talk, cry, cry some more and talk a little more before heading back to the car and face the journey home.Phone calls to Jo’s family, a very difficult face to face with her son, messages to my family to let them know what is happening.Then, the following Monday and we are back at QMC and Jo is made ready for the biopsy. A porter pushes her down to the operating room and I go with her, as far as I can, before heading into Nottingham city centre to try to pass time until Jo is out of surgery.Time passes really slowly but I get a phone call to say that Jo is in recovery. I head back to the hospital where we spend some time together before I leave Jo and head home alone.Home seems very strange, very quiet. Quiet, but not in a good way – too much time to think, cry, and think some more.Tuesday morning and I head back down to Nottingham and QMC to see Jo again. Spend a little time with her before she is discharged and we head slowly home.A few days for Jo to recover from the surgery before she starts to feel some sort of normality and she can at least wash her hair again.The following Monday and the now seeming obligatory trip to the Dr and Jo has her stitches removed.

Now it’s waiting time, again. Waiting for the results from the biopsy and to see exactly what our future lives will be like.After two weeks we get a call to say that they have had some results but cannot confirm anything just yet.
Weekly we chase to see what is going on - this feels like an eternity.Eventually we get confirmation that Jo has a grade four Glioblastoma.Treatments will be 6 weeks of daily chemotherapy with radiotherapy 5 days a week, at the hospital, with this starting at the end of November. Quick calculation and the last day of treatment will be 31st December - at least it will be done this year and next year will be a new start.With treatment booked for the end of November we book some time away – details of these adventures at the end of this piece….

Friday 7th November and Jo is having her radiotherapy mask made (see below)
This is designed go over her face and clip to the table behind her to hold Jo totally still during radiotherapy – so that the therapy can be targeted exactly on the tumour and healthy tissue is not affected.

The start of daily
Chemotherapy and Radiotherapy.

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

First treatment day is a little daunting but the radiotherapy is painless, if a little uncomfortable being clipped down unable to move, but it’s done and we head home.

A fly by from the Red Arrows does help a little as we feel we are being supported. But this is the first of many days like this. Weekends are different as, while they still involve chemotherapy, there is no radiotherapy to follow.

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.
While this sounds easy, it's far from.

Hair loss
Well, this is cancer treatment after all and the radiotherapy does take its effect. The scream one morning while Jo’s taking a shower. When I go in to see her, she’s standing there crying, holding a clump of hair in her hand. While this only covers a very small amount of her scalp the length of a hair makes it look worse.

Once dried, we’re able to brush Jo’s hair so that this hair loss can’t be seen, but, two days later another scream and another clump of hair in her hand. This time the hair loss and thinning cannot be hidden and so it’s down to the hairdressers to see what they can suggest
The wonderful Leigh has a look and after a quick discussion between the three of us, we decide it’s time to brave the shave. Out come the clippers and the deed is done in a couple of minutes.I join in and brave the shave in solidarity.

We both go shorter later but this was a start - and, apart from fighting the tumour, memories is what its all about now.

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 it 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 for 6 sessions..... then..... ?? Who knows??

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.Why 'Norman'?
Well, we realise that Jo's typing at work was the first sign that all was not well (although we didn't know that at the time), she was mistyping alot.
This tumour affects Jo's perception of where her left side is - so although she knew what she was doing she couldn't relate to where her hand was - a few keys out on the keyboard and things go wrong.
They are not normal - or not the norm...... but became 'normal' and these mistakes became Jo's norm..... so it was called Norman.TFN is not going to stop us doing things, in 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, spacial 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.