Above & Beyond Standard Care

Since I have started this blog and through word of mouth I am often asked privately to share what I have done medically and any knowledge I have on the best way to approach a new diagnosis of cancer. In addition to all the feelings trying to process the horrendous news that you or a loved one has this awful disease, trying to understand what and where to look if anything else can be done is more overwhelming than anything most people have ever experienced.

I was very lucky to have someone guide me through this myself and so I have always felt that where I can I should try and help others too. To be very clear I don’t, can’t and shouldn’t tell anyone what to do, I’m not a doctor.

And whilst I’m in remission and I have no visible evidence of disease that categorically does not mean I am ‘cured’. There is still no cure for cancer.

But there is hope and hope is what makes someone that’s been given that horrific news the ability to put one foot in front of the other, walk out into the world and still live their life. It’s not up to anyone else, a doctor, a loved one and certainly not me if someone should or shouldn’t have hope or want to explore anything else. It’s the patient who makes that decision and all you can do is arm them with information. 

Similarly every person and every cancer is different. My journey will never be exactly the same for anyone else. I can’t even say that any one thing I have done has definitely worked. But there’s a general process and some principles that I do feel passionately has been a game-changer for me and if this helps others then of course I will share it.

And so following my 2^nd anniversary of staying alive and another completely clear MRI scan showing no evidence of disease I thought I should write out what I tell people that get in touch.

Let’s start by what I have learnt about the standard level of care for the vast majority of cancer patients in the UK and then why I chose to go beyond this and what it included. 

Standard UK Cancer Care 

For the majority of cancers, the standard level of care available in the UK either privately or through the NHS is a combination of surgery, radiotherapy and chemotherapy. Whilst the equipment has improved, this core package of treatment has not really changed since the 1970s. That’s an astounding 50 years. It’s also considerably less than what our European neighbours, America and most western countries offer to their cancer patients. It obviously has some excellent success but our lack of access to new and further innovative treatments to use alongside it means the UK now has some of the lowest survival rates in the western world.

So after being diagnosed with stage 4 brain cancer in 2018 I quickly learnt that for me to have the best chance of longer-term survival I needed to go above and beyond (not instead of) what was being offered by my wonderful but totally restricted UK hospital team. 

Building the best team

In order to do this and with the help of friends we put together a team of professionals outside of my hospital that could advise on or provide other medication, supplements and in some cases other types of cancer treatment further than the standard care provided in the UK. 

Personalised Cancer Care

During my very quick introduction into cancer diagnosis and treatment I also learnt how important targeted therapy / personalised cancer care was. Every person’s cancer is genetically different and the best chance I had of fighting mine was to use cancer treatments that are shown to specifically target and work with the genetic make-up of my cancer cells. Understanding it’s exact DNA meant that the global medical team we had put together could advise on what innovative and targeted treatment options were proving to be the most effective from across the world for what I have. 

Diagnostics

The first step to be able to look at additional targeted treatment was therefore to get a comprehensive DNA diagnostic report of my tumour. Next Generation Sequencing (NGS) is done in some hospitals in the UK including my own but not anywhere near to the whole exome DNA & RNA sequencing they can do in Germany. I often describe it as getting the unique fingerprint of my cancer cells.

To get my tumour sequenced I had to send biopsy slides of my tumour from my UK hospital and some blood which was a remarkably simple procedure by courier. 

Above and Beyond – My Additional Cancer Treatments

While my UK hospital was treating me with radiotherapy and chemotherapy following my highly successful surgery, the other doctors and specialists we found were advising me on the additional cancer treatments and care I could do of which I did the following:

Personalised Peptide Immunotherapy Vaccine

With the complete genetic profile of my cancer it opened the door to the most personalised targeted treatment I could do, a personalised neoepitope peptide immunotherapy vaccine. Through the DNA sequencing of my tumour, neoepitope peptides were identified. In very very simple terms these are little ‘flags’ on the cancer cells each with their own genetic code. 

With the peptides singled out they could then use them to build a vaccine in their laboratory which would train my T-cells, essentially my immune system, to start attacking and destroying these now identifiable specific peptides / cancer cells. If it achieves its ultimate goal it would mean my body would just use its own immune system to kill the cancer. Immunotherapy is what every Oncologist I have ever spoken to says will eventually cure cancer albeit they don’t agree that we’re there yet. Only time will tell.

I have had this vaccine via a simple injection every month since April 2019.  It’s a 2 year course and then if there is continuing good news of no cancer development I will just have boosters every few years. Mind. Blown.

Optune

Optune is an FDA approved medical device that treats Glioblastoma. It involved shaving my head and wearing adhesive patches known as transducer arrays on my scalp which created low-intensity, wave like electric fields call Tumour Treating Fields (TTF) to the location of the tumour. The TTF interfere with the tumour cell division by slowing or stopping them from dividing and therefore growing. It may even destroy the cells. I continuously shaved my head and wore this for 7 months until I felt like my quality of life was being impacted too much.

Re-purposed Medication

These are existing, very safe, NHS approved medicines that are normally prescribed to treat other illnesses like diabetes, but that have been shown to successfully compliment and enhance the success of standard cancer care treatment. In other western countries some of them are given to a patient as standard when they are having chemotherapy. Sadly the UK doesn’t but you can access them through Oncologists and other doctors at some private clinics at a relatively low cost. I was prescribed a combination of off-label drugs including Metformin while having chemo.

Diet & Supplements

Whilst this is additional care it’s obviously also very standard for cancer patients to change their diet and I don’t think I need to explain why. I will say though that there are a lot of extreme views out there and like everything I’ve already said, it’s so important that it’s tailored to the patient and evidence backed. I was already quite slim so my brilliant specialist cancer dietician advised me against any of the hard-core diets and instead went on the evidence that a low-GI diet would work well for me and was showing great results. At CHHP I was also able to have blood tests which determined if I was deficient in any essential vitamins that would help my immune system deal with treatment. I take a number of vitamins and supplements including Symprove, a probiotic drink every day.

Emotional Well-Being

I don’t think anyone can tell anyone else how they should feel when going through this. I’ve written at length on this blog about the highs and lows of my own psyche throughout my tumour and then cancer journey but that is me. Just like everyone’s cancer is different, their way of emotionally dealing with it will be different too and there should never be any judgments about this. For me personally, I found the following really helped:

• Gratitude. Remembering everything I have to be grateful for even if it’s thinking of how wonderful my life has been through old memories and how incredible my body is to have got to where I am.
• Walking in nature. There is nothing that resets, calms and makes me feel more connected than being in nature and hearing the birds sing even on the darkest of days.
• Meditating and guided visualisations. I found it so powerful to visualise my body healing itself and have always found meditating the best antidote for my chaotic life and any anxiety I might be feeling. I most often do it solo but when I need an extra boost I go to Kim at Happy Heads and Veronica at Healed Soles.
• Therapy. I have always seen the benefit of therapy for anyone and everyone and when I got diagnosed with cancer I made sure it became far more regular regardless of how positive I was feeling. I found being able to share dark thoughts without the feeling I was burdening anyone was invaluable.
• Music. Similar to visualisations, the ability to change my mindset from a dark place to feeling like I can beat anything that’s thrown at me is astonishing through music. It is the reason I loved radiotherapy so much because I took my own bluetooth speaker and blasted out tunes that made me feel strong, powerful and happy. My friends all put together a playlist for me that I still put on frequently to dance round the kitchen. 
• Friends and Family. What would I have done without them. Just too incredible to even touch the tip of how they’ve helped me but every tiny thing that just showed me how much they care was more helpful than they will ever realise.
• Strangers. I am an exceedingly open person so I have shared a lot with many people. It always gives me a wonderful boost of energy knowing how much love there is in the world when people who don’t even know me say such a kind things and have me in their thoughts.
• Writing, publicly and privately. I never started this blog for any other reason than an overwhelming feeling that I needed to write it all down. It has obviously morphed into something else but it will always remain a therapeutic tool that helps me process this crazy journey.
• Having confidence and connecting with my Doctors. I transferred my Oncology care from UCH to The Royal Marsden as Dr Liam Welsh, a Neuro-Oncologist I was recommended, was a much better fit for me personally and more open and cooperative to what I wanted to do. It was vital that I could have an open conversation with my Oncologist without any ego or judgement getting in the way. I also went to see several Neurosurgeons before making my mind up about who I trusted to cut into my brain. When I went into the operating room with Dr Andrew McEvoy as my Neurosurgeon, I was completely at ease and confident with my decision. It turns out he did such an incredible job it might even be one of the reasons I’m still here. It’s sensible and reassuring to get 2^nd opinions and no good doctor should have a problem with that.
• Having a non-medical team to help with making care decisions. The path I have followed is categorically my choice and all responsibility for every decision with my care lies solely with me. I’ve described how I’ve had medical advice but ultimately I’ve had to look at everything myself and decide what I think I should do based on all the information. That’s no small task and like most people do, I asked my husband what he thought. What I realised is that it’s a lot to ask of one person who might feel they are somehow then responsible too for some pretty big decisions. So in addition to my medical team I asked a couple of other friends and my brother to act as my ‘non-medical’ team. They became the group I would relay and discuss all my medical updates and options with, they even came to my appointments across the world and asked questions I might not have thought about. It took the pressure off my husband or any one individual, created a sounding board for me and any new option and allowed me to have the confidence in myself and the decisions I was making. They continue to be my amazing team.

So there it is. My life for the last 2 years! It’s been exceedingly hard work but I’m so so SO grateful to my beautiful, incredible friend who explained there was another way to approach treating cancer. The dream is that one day none of us will have to explain what personalised cancer care is as everyone will have access to this process automatically. In the meantime I will keep trying to help. Hopefully this post is a start but there is also a wonderful charity that I am very close to who have started offering support in navigating parts of this process.   

I have spoken before about ACT for Cancer and Dr Jack Kreindler who I mention above is one of the charity’s co-founders so I am delighted that I can now tell people to contact them if they want to know more about where and how to start looking at other treatment outside standard care. They will also help patients in being able to talk to their Oncologist about what they’d like to do. If you would like help or to know more then the best way to reach them is by email at [email protected]