Month: September 2020

Men Get This Disease Too

Men Get This Disease Too

By Rod Ritchie Sitting in my doctor’s waiting room for a visit to find out the reasons for a breast lump, the last thing on my mind was breast cancer. I was relieved when, on this visit, and a subsequent visit, I was assured that 

Guest blog: my run-in with cancer

Guest blog: my run-in with cancer

Today is my 1 year cancerversary. One year ago today, I got a call in the morning before I left for work that my preliminary pathology report from my biopsy came back negative. I could expect to hear more from them in the next day 

The OWise App – what is it and how can it help you?

The OWise App – what is it and how can it help you?

This week’s guest blog is from the OWise team. You may have seen OWise on social media (with their really informative posts about breast cancer) or come across their App. In this guest blog, they tell us how the App came about and how it can help you as a breast cancer patient.

A breast cancer diagnosis can be hugely overwhelming: lots of information to take in, unknown terminology and a lost sense of control. To address these issues and improve patient experience, OWise was created. It is a free app that provides you with personalised information and self-management tools from the moment of diagnosis. 

The idea behind OWise began in 2013 when our founder, Anne Bruinvels, spoke to a friend diagnosed with breast cancer and realised that patients’ experience following diagnosis is much poorer than it needs to be. 

“In a time where technology is fully embedded in our daily lives, I wondered why there were no smart, digital tools to support cancer patients during their treatment. Since OWise was launched we have witnessed the positive effects it has on breast cancer patients, their treating clinicians, as well as the patient-doctor relationship.” – Dr. Anne Bruinvels

After first launching OWise in the Netherlands, Anne brought the app to the UK in 2016 through the NHS Innovation Accelerator Programme. The app has been used by thousands across the country and is actively recommended by many NHS medical professionals. Furthermore, after listening extensively to feedback from our users, we are excited to share that we have just launched a new version of OWise!

OWise is a great app and was hugely useful during my treatment. It was recommended to me by my oncologist and I am really glad I chose to use it. I would frequently refer back to it when I had to discuss my health with nurses or doctors and without the app, I don’t think I’d have been as aware of trends and side effects.” – OWise user

How is OWise a personalised app? 

OWise provides you with personalised information based on your diagnosis and treatment plan to empower and inform you throughout. This has been at the heart of our development due to Anne’s previous experience at the  European Personalised Medicine Association. Although a wide variety of personalised therapies were already in the market, Anne noticed that patients found it hard to understand why certain treatments were prescribed to them and others not. 

By answering some profile questions, you will have access to this personalised content. A personalised treatment report will be generated, providing a detailed explanation of your diagnosis, treatment options and the way ahead. To further help with your understanding, OWise creates a tailored list of suggested questions to ask your oncologist or breast nurse – improving communication between you and your care team. This feature is particularly popular with our users, due to the difficulty of knowing what types of questions to ask and remembering them on the day of consultation. 

In addition, users have experienced a better understanding of their wellbeing through OWise’s personalised insights. Over 30 different side-effects and symptoms can be tracked daily, allowing you to monitor any changes. Examples of trends you can track are fatigue, nausea, lymphoedema, hot flushes and sleep quality. 

How can OWise make you feel more in control? 

One of the most common pieces of feedback that we hear from breast cancer patients is that they feel overwhelmed by all of the information that they receive when they are diagnosed, which can be hard to keep a track of. With OWise, you can keep all of this information, such as appointments, prescriptions and doctor’s notes, securely in one place so that you can easily and simply access them at any time. This allows you to get organised and prevents the worry of wondering whether you have forgotten to bring everything in.

In the timeline, I registered all my appointments. Keeping an overview of ongoing treatments was very difficult with so many different doctors and appointments, but the app helped me to keep that overview, which made me feel in control.” – OWise user

Why is OWise more than just an app?

OWise allows you to share your wellbeing data with your doctors or loved ones via a secure link. This can allow your care team to better understand your side effects and symptoms to deliver the best care possible. 

“I used the OWise app to record daily stats throughout my primary diagnosis & treatment. It was invaluable for helping my care team to review any changes in my treatment & effects. It took all my fear away.” – OWise user

Data shared from your app is always performed in a secure environment. Data privacy is particularly important to us – we make sure that OWise complies with GDPR rules and we don’t store any personal identifiers (for more information check out our Privacy Policy).

We have also successfully integrated OWise into the hospital’s electronic record system of NHS Lothian in Scotland. This means that if you agree, clinicians can monitor your side effects and toxicities in real time. We are currently working on bringing this service to other hospitals around the UK and eventually around the world. 

Lastly, OWise has been validated and accredited: it is NHS Digital approved, used as a case study by NICE and it was demonstrated that 90% of patients and clinicians would recommend us to other patients. In addition to this, OWise is currently undergoing a randomized controlled trial at the Royal Marsden hospital

What can I expect in the new version of OWise? 

From the outset, OWise has been developed from a user perspective. We have run more than a hundred patient workshops across the UK and regularly interact with users to continually improve and develop the app. The new version includes a new, fresh design, additional tools to track side effects and symptoms, as well as a refined user experience. This would not have been possible without the invaluable user feedback we have received!

OWise is available to download for FREE on the iOS App Store and Google Play. If you want to learn more about OWise you can watch this video or head to our website. We are always looking to further improve the app, so if you want to get involved or have any questions you can get in touch with us through our website or social media channels!

September 2020

Please note that this blog post is not an advertisement for the OWise App. There are other breast cancer Apps available and it is your decision as to which App you choose to use.

The information and content provided in all guest blogs is intended for information and educational purposes only and is not intended to substitute for professional medical advice.

Secondary breast cancer – I can and I can’t…

Secondary breast cancer – I can and I can’t…

By Flori Hendron My friend Dikla called me last week. She tells me she’s now been living with MBC (metastatic breast cancer) for 18 years.  And then laughing she says, “my cancer is old enough to vote!” The two of us crack up at this 

Clinical Trials for secondary (metastatic) breast cancer

What you need to know By Emily Jordan, co-founder of Ancora.ai “Too many patients don’t live near or get treated at a cancer center. Local oncologists need information and patients need to be informed of their choices and empowered to ask for them. Clinical trials 

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

Secondary breast cancer: A slow train to nowhere

Secondary breast cancer: A slow train to nowhere

In this guest blog, Miranda talks about her secondary breast cancer diagnosis and the impact upon it has had upon her… In March 2019, I celebrated with a glass of fizz, the news from my breast surgeon that all was well and he didn’t need 

Q&A with Jo Taylor of abcdiagnosis.co.uk

Q&A with Jo Taylor of abcdiagnosis.co.uk

As part of the focus week on secondary breast cancer issues, Jo Taylor, breast cancer patient advocate and founder of ABC Diagnosis, has done a Q&A about her personal story and the work that she does on behalf of breast cancer patients. Can you start 

My new normal

My new normal

By Emma Sola

Emma wrote this a while back and it represents a point in her life when she was at the point of moving on from breast cancer treatment. It just sums up that difficult point at which you are trying to get back to normal life whilst dealing with the impact of what just happened. And, like many people, this point in time is often made harder due to a variety of regular things that we all have to deal with in normal life….

It’s another broken night of clock checking and internal negotiations. My mind thrums and whirrs, restlessly unable to settle on any thought for longer than a nano-second. As the seemingly constant rain beats down outside, my worries made tangible, I try to trick myself back into repose. But I am too clever for myself and I know how all the tricks work. 4.15 am. Got to be up at 6 anyway. In the end, it is better to just get up and get on with it, my life now sponsored by the Samuel Beckett quote “I can’t go on. I’ll go on.” Because what is the alternative? Making that first move to swing my stiff, oestrogen free body out of bed is always the best choice I ever make.

A year and a half on from my actual diagnosis of breast cancer, and two years on from an attempt at getting a diagnosis, I am back experiencing what I believe is known as “normal life”. I am a deputy head of English at a secondary school – and whilst I returned to work in February after completing radical treatment, September was always going to be the crunch test. I spent March – July just grappling with the clinical trial drug I am on which came with a range of deeply unpleasant side effects, one of which requiring urgent proximity to a lavatory (not ideal when teaching). With my dose reduced in an attempt to manage the symptoms, Letrozole and Gosserlin on Zero Oestrogen duties and my itchy mastectomy bra and sweat inducing prosthetic in place, I was back in the classroom.

On the whole the kids have been absolutely delightful, as they always are. They listened patiently and kindly when I explained to them that I have had cancer, and I am in ongoing treatment, that I do get quite tired and that sometimes I may not wear my false boob. And they have tried to remember this on Period 5 on a Friday when I want them to answer a practice exam question but they want to discuss who has a crush on who. In the Exhaustion Olympics, teachers face stiff competition from police, paramedics, front-line medical staff in A and E and other high stress public serving roles, but you have never known the mind numbing tiredness a teacher feels until you have done it yourself. Imagine being in a small, hot room for up to five hours a day. A succession of people – mostly between the ages of 11 and 16 – troop in and out all day, in batches of 25-30. The next batch is waiting to come in while the others are still leaving. You have to know everything about these people – from how they use a full stop, to what their home life is like. They don’t all necessarily want to be there – but you have to make them do things anyway, like read and answer questions about what they have read or write creatively on demand; answer their questions; stop them from shouting out “Foreskin!”; reassure them if they are anxious; check their uniform; ensure they don’t chew gum; monitor requests for the toilet and a million more. If you leave this room, you may encounter any number of people who need to talk to you. In person, via email, by telephone or by note, you are fair game at any stage in your day to be asked to do something or answer a question. Don’t even think about going to the toilet. You can’t. In the one minute you have time to do so, there is always someone else in there and if there isn’t and you make it in, someone can still talk to you through the door.

Much as I love my job, a day at school leaves you as drained of life force as if Dracula himself had decided to make you his birthday feast. The daily drainings take their toll. And of course, my job is not confined to simply being in a classroom telling people stuff. It bleeds endlessly into any time available. Every day is a work day for me.

So, busy job? Check. Ten year old son who does a million activities and needs help co-ordinating them? Check. Husband, house, cats, endless food shopping and attempts to eat healthily, exercise to attempt to stave off cancer recurrence, re-mortgage, complaint about misdiagnosis, worries about impending oophorectomy, trying to fit in friends and family, son’s secondary school application, writing, counselling? (no time), seemingly daily news about women dying unnecessarily from breast cancer, Brexit, the election, did I mention the constant, constant rain? And my cancer. My cancer? Oh God, I had it, it might come back. Is it there, in that twinge in my head? Is that metastatic breast cancer in the brain? CHECK.

The thing is, radical treatment allowed me to focus mainly on myself and being well, and everyone said how marvellously I coped. Give me time off work and I will cope with anything. I had time to plan and cook healthy meals; to run and swim; to write and paint; spend quality time with friends and family, and to see a counsellor. Now work is taking up 80% of my time and my ability to comprehend just where I am in all of this is seriously compromised. Stacks of unprocessed data on how I am feeling and who I am now and what I am doing are accumulating in my brain and ambushing me at night, waking me from my sleep and demanding to be dealt with. Some days I feel like I am adrift on the sea staring back at myself, unsure if that is actually me.

The last few months have been an exercise in going on, despite often not feeling capable. Cancelling all non-essential plans and living in fear of anything spontaneous being suggested – will my friends keep asking me out to lunch on a Sunday, or to see their band on a Tuesday night? Writing endless lists in an attempt at being in control. Attempting to ride the wave of exhaustion and confusion back to shore and hoping I find myself, intact. And actually looking forward to having my ovaries out at the end of November when I can go back to just focusing on me again for a few weeks, and the rain, I am sure, will probably cease.

September 2020

The information and content provided on this page is intended for information and educational purposes only and is not intended to substitute for professional medical advice.

Q&A with Helen Addis aka The Titty Gritty

Q&A with Helen Addis aka The Titty Gritty

Let me introduce the fantastic Helen Addis who has participated in this week’s Q&A. Helen (aka @thetittygritty) was diagnosed with breast cancer in 2018 and has subsequently spent a large proportion of her time involved in breast cancer awareness campaigns and helping others who are 

Research into anxiety and resilience after breast cancer

This week we have a guest blog from Laura who is doing a clinical psychology doctorate at Kings College London. She talks about the things she has learnt from working with women who have had breast cancer and are now moving on with life post-treatment.