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Helping you through breast cancer treatment

Guest blog: What a CBT Therapist Did for Herself When Diagnosed with Secondary Cancer

Guest blog: What a CBT Therapist Did for Herself When Diagnosed with Secondary Cancer

My background

A bit of Context

Sometimes I look back on the days when I had primary breast cancer and think how far I have come on this cancer journey. Everyone hopes that Secondary Cancer doesn’t happen to them. Others fall for the weird assumption that once they reach the end of treatment it is all over and they can put it out of their mind. I didn’t choose either path. I am a natural born researcher. Whatever fascinates me, I do my best to make my eyes square with the reading of it all. I am fortunate to have had all my treatment in Italy. Here they give you every single report and scan discs to keep and take with you to every appointment. They do have everything backed up in the system as well. But my health information is mine. I don’t have to beg or fill out GDPR forms to see it, I just get it on the same day. So, I had my hands on my biomarkers straight away.

Sometimes I look back on the days when I had primary breast cancer and think how far I have come on this cancer journey. Everyone hopes that Secondary Cancer doesn’t happen to them. Others fall for the weird assumption that once they reach the end of treatment it is all over and they can put it out of their mind. I didn’t choose either path. I am a natural born researcher. Whatever fascinates me, I do my best to make my eyes square with the reading of it all. I am fortunate to have had all my treatment in Italy. Here they give you every single report and scan discs to keep and take with you to every appointment. They do have everything backed up in the system as well. But my health information is mine. I don’t have to beg or fill out GDPR forms to see it, I just get it on the same day. So, I had my hands on my biomarkers straight away.

My Ki 67 tumour proliferation marker reading is quite alarming to read. This is a little known, to the general public, tumour aggression biomarker. If the Ki 67 is high it means the tumour is more aggressive in proliferation. My Ki 67 reading was 60. Triple Negative Breast Cancer is a particularly aggressive form of breast cancer and it made sense to me to have a high Ki 67, even though it made the diagnosis difficult to take. And the cancer had spread to my lymph nodes, meaning I was Stage 3.

Throughout all my initial treatment, I knew it was probably unlikely to be the end of treatment when the last radiation was mysteriously beamed into me. I walked away from treatment with a pragmatic view of, ‘we will see’. I did set about living my ordinary life. I worked, I entertained, I traveled. But I watched for signs and tell-tale symptoms like a hawk. During my initial treatment my surgeon and oncologist assured me that my type of cancer was unlikely to spread to the brain. I pointedly asked them this question, as I had read of the likelihood in my TNBC research and dreaded the thought of a secondary cancer in the brain, more than anywhere else in my body. I dreaded being brain damaged.

After my treatment was completed, they told me I should expect dizzy spells from the 30 rounds of radiotherapy and possible sight issues. And, sure enough, in the month after radiotherapy, I noticed a decline in my eyesight. I was frequently banging my elbow and shoulders frequently on door frames too. I put this down to the radiotherapy. I checked my breasts weekly and did a mental body check for any weird pains, there were none. I went for my first mammogram and ultrasound since my first ever one. It was clear. ‘So what’, I thought, only somewhat happy. After all, with all the surgery, chemo and radiotherapy, it was no wonder.

Secondary Reality

I always remained vigilant. It was in the month after the first clear mammogram and ultrasound on my breasts when my foot started to clip the pavement on my daily hill walk. I knew something was wrong with my motor skills. This coincided, in the same morning, with the full-on collapse of my handwriting. I just knew something was going in in my brain. I went to Accident and Emergency the same day as these symptoms, and was seen immediately and brain scanned. An hour later, I was whizzing through the streets in an ambulance to be admitted to my local hospital’s neurological ward with a two-centimetre brain lesion, in the front of the left side of my brain, in my motor skills section.

Was I terrified? Did I cry? No, I was resigned. All my research had prepared me for this moment. I knew what to expect. I knew the statistics. I was, however, deeply unhappy and very unimpressed with the misinformation given by my medical team. They had sometimes made me doubt my own independent research. I was determined to fight for people in my shoes if I got through this next phase. I even made a vow in the ambulance to help spread the word about secondary cancer signs, when I was through the recovery.

Some Tips on How to Cope with Secondary Cancer

Being Mentally Prepared for Bad News

It’s a strange thing being mentally prepared for bad news. It makes us more desensitised. As a CBT therapist I am an expert in helping people with anxiety and phobias. One CBT technique I use on my non-cancer clients with phobias is a visual desensitisation technique. Effectively, you imagine yourself in the feared, but likely, scenario, intensively, over and over again, until you bore your brain into submission, to the point where you don’t feel fearful anymore.

What I do

A brain tumour was a probability with TNBC, and I knew this from my own research, so I wasn’t surprised or shocked. I wasn’t imagining having a brain tumour, over and over again, but all my reading of secondary cancer from my initial diagnosis, in a way, desensitised me. I am aware of the probability of reoccurrence in my brain, bones and organs. This would be no surprise to me if a scan showed up something in the future. Yes, I would be disappointed but not surprised.

Seek Out Inspirational Stories of Stage 4 Remissions

Unfortunately, we don’t know enough about secondary patients who outlived all predictions to go on and live another decade or many more, but I know they are out there. If we solely relied on the medical statistics for guidance I think we would all be majorly depressed! But medical statistics for cancer only count the patients who stayed in the system and then only normally for five years. Then you get stats such as this person has a 50% chance of living for five years. But they only say five years because they stopped following patients after five years and many patients dropped out of seeing their oncologist when they passed the magic five year point, so they can’t accurately provide further data.

What I do

By good fortune, I had a new business acquaintance who I was working with, at the time of the primary diagnosis, who had herself had secondary cancer 10 years ago. She was given three months to live with her diagnosis. She is still going strong and doing well in her business at 60 years of age. She was my inspiration, and champion, from the get go! I had also read ‘Radical Remission’ by Dr. Kelly Turner, twice during my Primary treatment. Dr. Turner tells lots of accounts of people that were stage 4 but went on to survive. Even though I had taken a lot of the book on board, I still wasn’t doing all that was recommended in this. I used this book to change a few things.

Make an Assessment of what you are not doing too well that may help you

Often people say to ‘just stick to what your Doctor tells you to do’ or’ follow the standard protocol’. But when you are at secondary stage there may be no protocol and little guidance. You must seek out the information yourself.
Assess the following areas in your life honestly: diet – including beverages, exercise, relaxation, pleasure, spirituality, mental wellbeing, rewards and sleep. Any of these areas can be easily forgotten or left by the wayside when dealing with the aftermath of primary cancer. Once assessed you may spot gaps that you can work on that could help your body and mind cope better with secondary cancer.

What I do

The most crucial aspect of my being diagnosed the second time was time for reflection, as I lay in my hospital bed for five weeks. I assessed my lifestyle, what I had been doing that was good for me and what I wasn’t doing, I saw a few gaps. I was exercising, my diet was already transformed, I had cut back to two small glasses of red wine a week, although my Oncologist thought one glass of red wine per day would be good, well I was in Italy after all, but I prefer to be cautious! One glaring gap was my spirituality, I wasn’t looking after my ‘self’ in the spiritual sense.

Spirituality can mean different things to different people. I am not religious, but I do like healing my ‘self’ but I had been neglectful of this area. So, I added meditation and Reiki into the mix, using YouTube. When I was hospitalised with my brain tumour, I couldn’t leave the hospital for five weeks, so I used meditation and relaxing sound wave YouTube videos on my phone with headphones, and they really worked. I was so relaxed my medical team even made the comment that they had never seen anyone so relaxed before brain surgery! I still use the videos a year on.

I feel a sense of bliss and calm envelope me within a week of using various videos. I added healing crystals into the mix too. When the neuro consultants came to visit me, they often found me zoned out, eye mask on, listening to a reiki crystal healing session on YouTube, with my crystals on my chakras, and – they didn’t laugh! They thought it incredibly important.

Declutter Life

Secondary cancer can really make you look at life quite differently even to primary cancer. You have a realisation of exactly how precious life really is. Take time to inspect what is working well in your life and what is not. This can mean doing a ‘Marie Kondo’ on your belongings! But think about what is taking up you valuable time. If possible, have a declutter of toxic people who are not serving any purpose in your life. Particularly let go of ‘Frenemies’ or negative energy drainers. You have the perfect excuse to do this now, and they will understand if you are looking to stop socialising (even though you are being socially selective).

What I do

I decluttered my work life, as soon as I could, once I was out of hospital. I had been working evenings for over a decade as a CBT therapist and I had the realisation that enough was enough. I blocked evenings out on my appointment scheduling system. This cut my client load significantly, and it was the right thing to do, it has helped enormously with my energy. Plus, I get to have dinner with my partner during the week, which was rare in the decade before Cancer, when I used to finish work at 9pm.

Be Careful of Who you Tell About the Secondary Diagnosis

Most people have no idea about secondary cancer. When they understand, they can react in unexpected ways. It’s fine championing on a friend during primary treatment because they probably expect you to come out the other end with the ‘all clear’, particularly if you are young. It’s quite another thing to support someone with an unknown ending, such as secondary. They can’t help but think and fear the worst. Sometimes people just can’t deal with the reality.

What I do

I only told ten people who I trusted, that I had been diagnosed with secondary cancer. The ten I chose were because I knew they would inspire me and wouldn’t give up on me. I didn’t tell anyone who is of a negative personality type, as they zap my valuable energy. I don’t let on to new people I meet socially that I have Secondary Cancer, as I look very healthy and don’t want to get treated with cotton wool. But I will keep my promise to myself to advocate for secondary cancer awareness on a professional level in 2020 the more awareness of what symptoms to look out for the easier it can be to treat, if caught early on, with metastasis!

Dealing with Scans

‘Scanxiety’ is a real concern among my clients with primary and secondary cancer. I don’t suffer with anxiety about upcoming scans myself, but a lot of my clients come to me for this very reason. I do recommend treating yourself with kindness, as the scan date comes closer. I make sure my clients have some powerful relaxation tools and cognitive techniques at their disposal. They use these more frequently, as the date draws near and after, during the wait for results.

The most important thing is not to predict any negative scan without evidence. Easier said than done. It is impossible to know what is going on inside our bodies. However, CBT is a rational therapy and I do encourage people to come up with a ‘Plan B’ for negative results. Type it up and store safely, this way you won’t have to panic or make rash decisions in the moment. Consult your ‘Plan B’ and see what guidance you gave yourself when you were thinking rationally. This can include a list of questions to ask the Oncologist, so make sure you can access the plan on your phone for meetings with your medical team.

What I do

I make my own appointments here in Italy, on the advice of my oncologist re time frames. I only see him every six months. Because I get the results and not him. If anything arises on the scan that needs his attention, I know I can see him, or his team, in a matter of days. I find the months speed along and before I know it the next rounds of scans arrive. I only feel a little anxious on the day itself, as we all do, we are all human. I do use some CBT breathing exercises when being scanned, so that I can relax in the tunnel! I haven’t had to redo a test yet due to moving or shaking, though it’s always so cold in the scan room! I also think of a topic I would like to think through during the scan, to occupy my mind, such as where to go on holiday or what Christmas presents to buy my family. That will be on my mind in the next scan in December! So far to date, I have had clear scans. Currently, I have a full body PET scan every six months. I have brain MRI scans separately every three months, I am expecting that to be less next year, if there is no recurrence. But again, I know I am lucky, as I live in Italy and have the results in my hand to read in a matter of hours so I don’t have to think about after scan anxiety.

Be Vigilant

Vigilance is key. There is a strong likelihood of all sorts of health problems with secondary cancer and I don’t just mean more tumours. Be assertive with your Doctor. If you are not an assertive person, I recommend doing CBT to get help with having the confidence to be assertive and to improve your communication skills in this area. It is mine, and a lot of my clients, experience, that doctors are not as responsive to secondary cancer patient’s needs, as they are to primary cancer patients. I think this may change in the future as cancer patients lobby for it, and with the increase in younger people being diagnosed with secondary cancer. In the meantime, you must be your own advocate and push for tests, scans, treatments and trials. With secondary cancer it seems those who shout the loudest get the attention sadly. If you are in no shape physically to advocate for yourself find someone who is. There are lots of great cancer advocates out there to assist you.

What I do

I allow myself to get consistent pains and aches checked out and insist on a scan to rule things out, after all no doctor has x-ray vision! I have an aching hip that my Oncologist is putting down to neuropathy, but I had an x-ray none the less. I use a three-day rule. If the symptom is still there after three days, I note it down. If it is still there after ten days, I see my doctor. Of course, this rule is for mild aches and pains only! For more serious excruciating pains or weird symptoms, like sudden vision loss, motor skills malfunction or organ malfunction go straight to A&E! I find my body responds better in warm weather rather than cold these days. We live near the mountains in Italy, in a very cold house. Last year, after leaving the big city hospital in January, we moved to the same city for five months and a cosy apartment for the rehabilitation phase, as it was a stroll to the hospital. We have booked the same apartment this winter too. Life is too precious to be cold!

Support Your Loved Ones

It can be hard to support others when you have secondary cancer, but if you can it will make you feel good to help. This can be often just letting people tell you about their bad day, their terrible boss, their break up… These may all seem trivial in comparison with cancer, but I am sure you can remember a time when those little things hurt too? People feel hurt for all sorts of reasons that don’t seem as important as cancer when you have cancer. It is important to remember the years before cancer. To remember the tears, the anguish, disappointments, frustration and anger at life, and all its obstacles, small and large. It’s too easy to have a comment or thought, such as, ‘Well at least you don’t have cancer!’ when a loved one is complaining about their lot. Be kind and aware of other people’s feelings and support them, as they support you.

What I do

I didn’t stop working throughout my primary breast cancer treatment. I knew that my attention would be best diverted with my mind focused on others, rather than focusing just on me. I had a lot of protesting, from my loved ones, they couldn’t understand why I had the need to keep seeing my clients, they just wanted me to stop working and rest. I didn’t have any major side effects, apart from hair loss, and I was able to work easily. (I had to take 4 months off to recover my speech after the brain tumour was removed, that was the hardest part, it was very boring and hard because physically I was fit but I had to rest.) I love my work and helping people learn amazing tools and techniques to ease their path through life’s challenges. Working was a form of respite from the situation at hand, and I am thankful for it. Just as, after my recovery from brain surgery, I have been working this year with my clients in my regular CBT practice and my cancer focused CBT practice. We all need to give some time to distractions, it’s good for the mind.

There is much you can do to help yourself cope with secondary cancer. If you need help with calming the mind or lifestyle behaviour change seek out assistance from professionals specialising in this area.

Written by Clare Reed, Cognitive Behavioural Therapist www.cbtforcancer.com

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