What is one thing you wish you knew before Hollie started treatment?

In March 2019 Hollie (Hol) was 39 and at work as a physiotherapist and was about to go and have a consultation with a patient when she had a moment of not being able to form a sentence and having to excuse herself from the consultation. A colleague quickly noticed that something wasn't right and walked Hol to A and E within the Queen Elizabeth hospital in Kings Lynn where she worked, where she then had a grand mal seizure. 2 months later after many scans, consultations and surgery to remove the small tumour that had been identified, a biopsy was conducted and at the end of May 2019 we had the diagnosis of GBM. Hol had 15 months of treatment following this while my brother and I helped to support her and keep her independence for as long as possible. She was incredible, always smiling, so supportive as a sister and friend and always seeing the positives in situations. She loved her job and was great at it. So content with life which made her the most present person I know! Definitely a human to look up to and we continue to do so. 

I wish we'd have known more about brain tumours and where to get support, how to access research findings with a view to making informed choices about treatments and being able to access other types of treatments based on the specifics of the tumour we were dealing with. I think it's this information that would have made such a huge difference in our mindset firstly, a sense of going into battle with all your armour! Also I think in time this will lead to brain tumours being treated more successfully with a more efficient, bespoke approach.  

There may not be what we think of as ‘good results’ at the end of each phase of treatment. It’s intense. Plan the down periods and plan things that lift your mood in these periods. Let people know the dates of significant days when you’ll need a rally from your friends and loved ones … like mask fitting day / starting a new chemo cycle day / MRI day / consult days. 

What did Hollie change in her life to support any medical treatments you got - dietary changes, activity changes, supplements?

We didn’t make too many changes but we were told to try and find medical trials as there were immunotherapy trails going on with treatments that were not yet happening through the NHS. We managed to get on a trial through UCLH but unfortunately were randomised to the control group

My sister decided to follow a Ketogenic diet through the first year of her treatment which she stuck to rigidly. I think there was definitely some benefits in her mindset by doing something that felt like it may be helping but I think when it failed to correlate with any improvement in the tumour Hollie got despondent and so she felt like she wanted to put her energies into other things

What was the most difficult part of the journey and how did you overcome it?

The lack of positive outcomes to spur you on. Feeling a bit more depleted at each part of the journey. Find your positives and wins and celebrate these. Try to keep humour in the days and black humour so you’re addressing what’s happening too. 

Hollie losing her ability to speak was really tough on all of us . She was always the chatty one and loved a good discussion about anything work related as we are both physios and her not being able to convey what’s she was saying was a real blow so we had to find ays of trying to communicate differently and to recognise and learn what made it easier for her to communicate for example quiet undistracted space with no background noise. 

What is something that you found has given you hope during this time ? 

I think I’d have to say that hope came from our social support and love from family and friends and carers. I think it’s so easy to become so engulfed in the horror of what might happen that you need people who are perhaps slightly removed to remind you of the simple things that still exist to make us smile or be appreciate of any single moment that the cancer cannot take away . 

What advice would you give on how to best support a loved one going through brain cancer? 

In my opinion it’s all about them. In our situation it was being the voice of optimism and positivity. Creating a structure and routine in the day. I guess follow their lead . We didn’t talk much about death and ‘what if this doesn’t work’ ! We didn’t allow any room for this ‘negative’ chat but on reflection I wonder whether this is important to address perhaps? My sister suffered with Aphasia for the last year of her life and this meant it was often difficult to have full conversations and for her to fully express herself and her feelings. I found that we had to try and get creative with ways to ease this for her as I can’t imagine how hard this must have been (especially for a very chatty person like my sister). 

What was your biggest self-discovery or revelation after Hollie was diagnosed?

In not sure about this one . I guess I would have to say the ability to find chinks of happiness and ‘connection with life’ in the very small things . Due to us going through most of this during the pandemic the size of life had been reduced significantly already and then for it to be reduced even more by the limitations of living with a brain tumour we all had to work very hard at finding moments of ‘joy’ in a very small routine within the same four walls !

" I think push more … for any insight and potential option that might make a difference. Push for bespoke testing that might shed light on how best to treat Hollie’s tumour. Set the search for trials early, even start fundraising for treatment options that aren’t provided either in this country or on the NHS.  " 

How did Hollie find the strength to go through the treatments?

Sorry to be blunt and negative about this one but we felt there were no choices . This is a huge part of the emotive aspect to brain tumours generally . SO LITTLE INFORMATION on treatment options and bespoke treatments for the individual being treated . The treatments seemed relentless and such a huge commitment but it was the only thing presented to us vs no treatment ! We searched out clinical trials but none of this is an easy process when you’re already dealing with the enormity of a GBM diagnosis 

How did you all deal with the anxiety that surrounded Hollie's diagnosis?

Im not sure we did . We started with some psych help while Hollie was still able to communicate well but this became increasingly difficult as things progressed when arguably that’s when we / she needed the most . We had meltdowns while holding each other and just sobbing , we had what on reflection I think where panic attacks and just sheer darkness moments when the enormity of it all feels like it engulfs you . This is an area where we needed much more support and help than anyone offered us or we could find . We had many days where we were all desperate . My mum was also experiencing terminal cancer and I was heavily pregnant and this was all in the pandemic. These were and always will be the darkest days we experienced and it still takes my breath away thinking about the depth of pain and suffering during some of these days 

What did you all do to help you meet the challenges of the treatments?

We tried to stay informed … we were very much ‘knowledge is power’ so we knew as much as possible what to expect although trying to stay informed was hard with GBM as there on the whole was very minimal resources on treatments . We stayed active and ate well, focused on the low hanging fruit as this was the stuff that we could still control.

What did others close to you do for you that made a difference?

Kept in touch. Offered to help out where possible and plenty of face to face contact where possible. Part of our toughest time was in lockdown so at this point it was difficult for people to help out practically but I believe Hols close group of friends stayed very close.

Did you join a support group? If so, how did it help? And would you be happy to recommend/share the link?

We joined Facebook groups for people living with GBM and for the careers of people with GBM. I looked into the support group which is part of the brain tumour foundation but Im not sure I found any of it a great help.

With the benefits of hindsight. if you or a loved one had to do it all again, what would you do differently when going through your diagnoses and treatments?

I think push more … for any insight and potential option that might make a difference. Push for bespoke testing that might shed light on how best to treat Hollie’s tumour. Set the search for trials early, even start fundraising for treatment options that aren’t provided either in this country or on the NHS. 

Get psychological support early on … for everyone involved.

Most importantly book trips away with family and friends … just ‘do life’ as much as possible and consider getting care involved early on even if it’s just people to help out with practical stuff at the start and then progress this but having other people to draw into your support team early on just helps disperse the physical and emotional load. 

What three things would you tell a person who just yesterday learned of their diagnosis?

1. Ask questions and be pushy in any consultations 

2. Make sure you notice the small things that are still going on in life and try to celebrate these no matter how hard feeling any joy may be. 

3. Get familiar with the care system and any external support systems and what is out there to help support you and your carers

Were there any particular blogs, organisations, books, websites, journal articles, or people who were especially helpful with support and/or information?

This is a tough one to answer as I don’t remember there being anything that stood out as wow thank god we found that out. I had a neurosurgeon friend that helped a lot personally as he clinically treated children with brain tumours and therefore was very much ‘in the know’ and he also had lost his wife to breast cancer which gave him a very empathetic element to any conversation he had with me and always brought the non medical considerations into the equation … the real life day to day stuff … this was invaluable.