What to do if your cancer comes back – First-hand advice from CBT Therapist Clare

You see, over the last few months, I have been going through treatment for a second time for triple negative breast cancer.

My story

Last autumn I noticed I was starting to have problems with my eyesight and blurred vision. I went to an optician, but she didn’t find anything amiss. I put it down to the consequences of 30 rounds of radiotherapy during my cancer treatment for triple negative breast cancer the year before. When I started miss-hitting keys on the keyboard, and my mobile phone keys a week later, I thought I ought to get a pair of glasses. When I started scraping the ground with my right foot, on one of my countryside hikes, I broke out in a cold sweat – I thought I must have had a stroke! I rushed home and got my partner to drive me to the nearest A&E.

On the way to the hospital, I checked out the symptoms for a stroke on my phone, and I had a good number of them. The A&E team rushed me into an MRI scan thinking it could be a stroke, only for them to change their minds 20 minutes later after spotting a 2.5cm tumour in my brain. The cancer which I had thought was behind me was back.

Knowing what to look for

If I had known there was a chance my cancer could return in my brain, I would have learnt what symptoms to look out for. Every doctor I have since met has asked me, did I have headaches? No, I did not. It was only the neurosurgeon who explained that it depends which area of the brain the tumour is sitting in that determines if there is any pain or for that matter what symptoms can arise. Blurred vision, trouble coordinating, slurred speech, mood swings, headaches and memory loss are all varying signs to look out for. But generally anything different or odd with your mental cognition should be mentioned to a doctor.

I had the tumour removed by a fantastic team of neurosurgeons. I didn’t feel an ounce of pain at any stage or after the operation. They truly are superheroes!

Cancer cells can be tough little cells. In my case it seems they never ‘went away’ as I had thought. I took those initial symptoms to be a consequence of radiation and chemotherapy, as they are well-documented consequences, apart from scraping my foot along the ground. I am ever so grateful for that autumn hike! That hike pointed me in the direction of A&E and not a moment too soon, because if the tumour had been another ½ cm bigger they wouldn’t have been able to operate and I would have had a tougher road ahead of me.

But now I am through all of this, I can pass on how I dealt with it, as it might be able to help anyone else who finds themselves in a similar situation.

My top tips

1. Try not to panic, remember what you know

Apart from the anxiety caused by thinking I had a stroke, I didn’t panic. In fact, I was relieved to not have had a stroke. This is because I knew all about cancer, I knew how to deal with it and this knowledge reassured me that I could handle this.

2. Try to make the best of the immediate situation

I turned my hospital stay into a mini health spa. So in need was I of a fully inclusive holiday and as I found myself in hospital for 5 weeks straight (the first 4 on high dose steroids and the last week recovering from surgery), I decided to get creative.

Before the diagnosis my partner and I were planning a vacation to an all-inclusive warm place – well I certainly got that wish – it was a balmy 28 degrees in my hospital room! I listened to loads of classical music, meditation and sound waves through my headphones – it was lovely to have so much time on my hands.

3. Help yourself with self-care

I tweaked most of the hospital food given to me to suit my personal diet protocol. I had a box of supplements with me and took these along with my medications (with supervision from my team). My sister gave me beautiful lavender aromatherapy gloves and slippers, which I used every other day for a couple of hours. At night I watched the Mrs Maisel or Outlander series on Amazon. I went for a 30 minute walk twice a day around the hospital. I struck up conversations with other long-stay neurology patients, most of whom were stroke patients. I sunbathed on warmer sunny days on a park bench outside, in addition, I took a Vitamin D supplement too.

I was strangely enjoying myself. It was the first time in 22 years that I had had so much time off with no obligations.

4. Inform those that need to know and set boundaries

I wrote a letter and emailed it to close friends only, filling them in on what happened and explaining I would not be able to communicate much. They respected my wishes to only send me funny stories and positive news.

I delegated research tasks to my partner and he truly stepped up to the challenge.

6. Take care of the legal side of things, if this bothers you

I had my will updated. I had power of attorney letters drawn up for my business and my life. I didn’t have to do it right away, but I wrote instructions for my funeral, which I had some fun doing, in a bizarre way, and it made me feel calmer when I had finished. We looked at getting married for tax purposes, but it was too awkward, and time was too short leading up to the operation.

When I woke from the operation to find I was unable to talk, or move my right hand, I didn’t panic. I had been informed that this would be likely, and that I would regain full speech and hopefully my right hand, in approximately 3 months. I am pleased to say I did all my physio and speech exercises and recovered in both areas. Managing expectations (yours and those of family) is crucial so get informed of what consequences can arise from any surgery and treatment you are facing.

8. Get ‘in the zone’ for wellness and healing

I quit reading the news as I needed a calm mind. Do whatever it is you need to do to get in the right frame of mind to tackle your diagnosis.

What I learnt

Overall, I think I managed this better than the first-time round. I didn’t have to do so much research as I had done it before. I knew what to do. One of my friends likened it to having a second child in that I was so well prepared and more relaxed than I was the first time I was diagnosed. I enjoyed having the time off to contemplate and do little. I even liked the time off after surgery and not being able to talk (I knew I would recover my voice). Indeed, soon I was 6 weeks ahead of schedule in my recovery, to the amazement of my doctors.

The future

Yes, my cancer has metastasised. But, I have a plan I am happy with, working with my medical team and including research I have done.

If cancer comes back for you, the main thing to remember is, don’t panic, think of the learning and information you already know, work with your medical team and put it into practice as quickly as you can.

About Clare

Clare offers a life enhancing service with her CBT therapy to cancer patients, both past and present, and carers. She was a cancer carer herself once too, as well as being a breast cancer survivor, and she understands both sides of the story really well.

You can contact Clare for more information through her website www.cbtforcancer.com. All her therapy sessions are conducted by Skype which makes her therapy accessible wherever you are in the world.

Thank you so much Clare for sharing your story.