My post-cancer PTSD time-bomb

In this guest blog post, Shine community member Jen shares her experiences of post-traumatic stress disorder (PTSD) after breast cancer, and how these feelings affect her upcoming brain surgery for an unrelated condition.


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Meet Jen!

It seems that having cancer – and more specifically, months of treatment to be rid of that cancer – leaves you with a ticking PTSD time-bomb for future serious medical issues. No shit Sherlock, I hear you scream! I know – it seems obvious, doesn’t it? PTSD is just another one of the many, many things that nobody prepares you for when you walk through that hospital door after cancer treatment, merrily waving your goodbyes and looking forward to returning to your life. I had cancer at 36 and, touch wood, I am all clear so far. Given this diagnosis, it would seem pretty feasible that I might come up against another serious medical issue at some point. Why would nobody think to address the trauma of cancer? Mental health is yet another thing that sadly falls by the wayside for younger adults with cancer.

I’m sure that my experience of PTSD will resonate with others – and I hadn’t really dealt with, acknowledged, or understood the trauma until very recently. It makes perfect sense that what happens to us after cancer is going to be influenced by our experiences of diagnosis and treatment, just as all our other life experiences shape us and influence how we react and respond to future events.

I’ve learned that the actual ‘trauma’ of post-traumatic stress might be something that was not initially perceived as trauma. Trauma can be something that creeps up on you over time: it grows with you, in you and through you, slowly and steadily like a fungus. When you get diagnosed with cancer, there’s no time to deal with your feelings about it. Instead, you batten down the hatches and get on with getting through whatever you have to get through. There is a lot of information to take on board, but pretty much everything is out of your control. You are swept along on a rollercoaster ride from hell and when it ends, you are just thankful that you are still standing –  regardless of the state you are in, and the trauma that may have occurred along the way. You process your emotions in the months and years afterwards, and the trauma creeps up on you unexpectedly.

I have known for years that eventually I will need surgery on a slow-growing, benign brain tumour. It’s in a very awkward place. I have a condition called Schwannomatosis. It was diagnosed after cancer, so it seems that I am doubly special and unique! I have yearly scans and appointments with a specialist team of neurologists, and then I shelve it away for another twelve months and get on with living my best life. I’m pretty good at that! I genuinely don’t dwell on it. I had thought that this pattern would go on for many years to come so, other than the annual drama of getting a cannula into my chemo-destroyed veins (and a small amount of pain from time to time), I could almost live in happy denial. Unfortunately, in September 2018 this all changed: the little bugger had grown significantly in the past two years and if it continued, my eyesight would quickly become compromised. This means that I now need fairly complex and somewhat risky neurosurgery.

I am great at going to appointments and discussing all the details, from options to risks. But as I get closer to the operation, I’m not entirely sure how I am going to be able to let it happen to me! I know I have to, right? I know I do. It has to be done. It’s been planned and discussed, and I’ve been waiting for months. But the thought of having my body cut into again, damaged and broken, and drugs being pumped into my fragile veins? It just makes me feel nauseous, and that feeling triggers vivid memories!

It has been five years this month since my breast cancer surgery. Beforehand I had had four months of chemotherapy, and post-surgery I had five weeks of radiotherapy. My body has healed and my hair has regrown (sadly not my eyebrows, but I do have rather fabulous tattooed ones now!). I still ache though. I have radiotherapy damage in the bones and muscle on my chest wall, and I’m reminded of this when my kids hug me a little too tight. I have permanently painful toenails – first because they fell off during chemo, then from walking around the Isle of Wight (stupid me), and then from walking up Kilimanjaro (double stupid me!). I bruise easily, and my joints ache due to the drugs I take to keep the cancer from returning.

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Jen and her family

My youngest daughter has to hold my left hand rather than my right as she tends to tug and it hurts the back of my hand. My hand has never had a chance to recover from the onslaught of cannulas. I mention these things not as a sob story, but to explain that my instinct is to be very protective of myself.

I hate it when I hurt. I hate getting badly bruised if I clumsily walk into something. It makes me mad: disproportionally mad or disproportionally upset, depending on the situation. The thought of rocking up to a hospital voluntarily to check myself in for a lengthy, complex surgical procedure is obviously horrific – with or without the prior experience of cancer. Alongside these feelings comes an overwhelming, intrinsic, sense of self-preservation. I just don’t want my body to suffer anything more – it’s bounced back from so much, and I’m so thankful. This time it feels like I am choosing to do this to my body, and it will never forgive me!

Along with all these thoughts comes cancer guilt: the guilt that comes with survival when those with the same cancer and prognosis as you have gone. The guilt of remaining cancer free while friends get secondary diagnoses. The guilt of forgetting to be grateful every single day because there are people hoping for just one more day of life. The guilt of being stressed about one single surgery when there are people going through far worse in a desperate attempt to simply survive.

I have to have surgery. It sucks, but at least it isn’t cancer this time.

If you’ve enjoyed this blog, we’d love to connect with you! If you’re in your 20s, 30s or 40s and have had a cancer diagnosis, why not join our private Facebook group

Meet Neil: Shine’s newest employee!

We’re growing again! Meet Neil, our new Shine Network Support Officer. In this post, Neil shares his experience of having a malignant brain tumour and talks about how his life post-diagnosis led him to working for Shine. 


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Good times!

Hi everyone! My name’s Neil and I’m Shine’s new Network Support Officer. I am originally from Scotland but these days I live in North London. Previously I worked for a mental health charity which focused on social inclusion and co-working with volunteers, and I have been a member of Shine for a few years now. It brings me so much joy that I am now able to join Shine in supporting young adults after a cancer diagnosis.

I first discovered Shine while I was awaiting an oncology appointment at the Royal Marsden Hospital. In November 2016, when I was just 26 years old, I was diagnosed with a medulloblastoma, which is a cancerous brain tumour. I was working as a bar manager but was told by doctors that due to my dizziness, partial deafness and fatigue, I wouldn’t be able to do this anymore. It was a real shock to me that I wasn’t this invincible person that I’d always thought I was! I had surgery, followed by radiotherapy, and then a difficult recovery. During this time I suffered with some mental health issues. I moved back to Scotland after my diagnosis and my family and friends did such a wonderful job supporting me. While at home I attended counselling through Maggie’s which helped me to begin to understand all the trauma that had come from having cancer. When I moved back to London I started CBT therapy. This was awesome and I believe it really changed my life. I hadn’t realised that I had quite a negative voice inside my head, and being kind to myself continues to be such an integral part to my mental well-being.

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The scar from my operation for medulloblastoma

I was unemployed and having an awful time with my benefits, so I really wanted to get back to work as soon as I was ready. I went to my first Shine meet-up after days cooped up at home, and I thought they must have found me annoying as I had so much energy! To my delight I was completely wrong and I really enjoyed being around people who just ‘got it’. Some people in my life  didn’t care about me as much as I had thought they did, and I found myself in a really lonely place. The meet-ups helped with this, but since my treatment I had been quite shy about meeting new people and without working, I struggled to understand my place in society. I saw a post in Shine’s private Facebook group that invited men to apply for the Great Escape, a weekend in Bournemouth for 22 young adults affected by cancer. I applied and was accepted. It was life-changing for me (totally amazing!), and really made me want to focus on moving forward with my life. I met some lifelong friends and would highly recommend anyone who is interested to apply.

At my next Shine meet-up Clare, one of the London Network Leaders, recommended that I try some volunteering in my ongoing search for employment. I felt totally lost as I didn’t have a clue what I could do with no exam results (I was a naughty wee boy!), but I managed to start volunteering at a youth homeless shelter. I loved this. Many of the residents had mental health issues and I realised I had a keen interest in supporting this. I also recognised myself in some of them. After this I began volunteering for a charity that supports people with mental health issues. After two months I applied for a job at the charity and I was successful. I broke down in tears when they called me – and then I phoned my parents afterwards and sobbed away again! It felt like such a difficult road but I had got there, and my kind voice in my head gave me lots of compliments!

 

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My family have been very supportive of me

Since my treatment I had struggled with a loss of confidence, which was especially noticeable when dating! Complimenting someone when on a date was just beyond me, and I would get quite upset afterwards if I didn’t think that the date had gone well. Clare and Jess (another Shine London Network Leader) host a dating session at Shine Connect, which is Shine’s annual conference and the only one in the UK supporting young cancer patients in their 20s, 30s and 40s. I picked up some tips from them which really helped me to just treat each date as ‘practice’ and not get myself so hyped up beforehand. My best mate also kept on at me to ‘get the old Neil back!’. These days my confidence is much better.

After eight months in my charity role, I noticed that Shine was hiring for a Network Support Officer. I realised that the experience that I had in my current position, and the skills I’d picked up in previous management roles, made me a very suitable candidate – so I applied. Learning that my interview had been successful was another life-defining moment for me. And that really just brings us to now!

I am really passionate about helping people and I believe that that is my purpose on this world. If I could’ve spoken to myself during my bad times, I would’ve told myself to keep going. Don’t beat yourself up, and things will get better. Be patient and just take everything one day at a time. Make sure you are kind to yourself!

Thanks for taking the time to read this, and I hope to see you at an event soon!

Meet Jonathan!

There aren’t many jobs where having had cancer works in your favour, but here at Shine it strangely does. Today, our first ever Programme & Administrative Assistant, Jonathan, starts working with us and we couldn’t be more excited! We were delighted when we met Jon and found that he had both the skills and enthusiasm we wanted – and also that his own experience of cancer meant that he totally gets what our work means.

Jonathan grew up in Bournville, Birmingham (with the scent of Cadbury chocolate in the air!) going to drama classes, singing, playing the piano and building a huge Lego collection. He studied acting at university and is now based in Poole. Jonathan will be helping to ensure that everyone has a great time at Shine’s national events and that as many people as possible know about Shine’s work via social media. We asked Jon to write his personal experience of cancer so that we could all get to know him.  Read on to learn more!


What were you diagnosed with, and when?

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Shine’s new Programme & Administrative Assistant, Jonathan

I was diagnosed with a malignant brain tumour (pineal germinoma) in 2007 which had spread to my spine.

How did you find out that you had cancer?

Unquenchable thirst and un-ending trips to the ”porcelain throne” were my first strange symptoms in 2004. I was told constantly by my GP that I was a “healthy young man”. It was 2006, when my weight had dropped to below 7 stone and I’d begun to see double, that my GP finally referred me to eye hospital.

After identifying (and filming) a rare eye condition, the eye department sent me for a MRI scan which revealed a ”small benign lesion” pressing on my pituitary gland and optic nerve. A pituitary condition (diabetes insipidus) which was causing my water problems was also belatedly diagnosed.

On 27th March 2007, I woke up barely able to walk or speak, and emergency brain surgery finally revealed I had a malignant tumour.

What did you think and feel when you were diagnosed?

I had no idea what a “lesion” was or that it could mean “tumour” or “cancer”. I continued working for a year not thinking anything of it and just coping with the daily symptoms.

Everything changed following surgery as I understood that the tumour was life-threatening and what the treatment entailed. I always felt fortunate knowing that it was likely to be curable and I didn’t feel scared as I was determined to do everything to get through. But I was naive about what that would involve.

How did the people around you react?

People at work really supported me throughout the strange symptoms while I continued to work and once I began treatment. They took me out and visited when I was able and kept me sane.

My parents and family were there for me 100%. I moved in with my folks and there were times when they had to do everything for me. I reacted badly to medication and radiotherapy and changed so much with the hormonal effects and tiredness, but they were always positive that I’d return to my old self.  I know it was really difficult for them and my sister to see my anxiety and panic attacks but not once did I see them get upset or short-tempered with me. Legends!

What treatment did you have?

The brain surgery (an endoscopic third ventriculostomy) relieved the pressure on my brain. I was then put on high calorie drinks to increase my weight and strength in prep for six weeks of radiotherapy.  I was also on dexamethasone which caused my longest stay in hospital as I reacted badly to being weaned off the drug following treatment.

For a couple of years afterwards I still had regular tests to determine what hormones had been affected and I had six monthly MRI scans until 2012 to ensure the tumour was completely gone. Physiotherapy helped my walking and counselling helped me cope with the hormonal and emotional impacts of the illness.

How did you feel through treatment?

I felt in limbo after the surgery in March 2007 as I waited for radiotherapy to begin in July. I was determined to increase my weight but felt very apprehensive about the effects of the rays. Unexpectedly those three months also gave me time to sit back, to think, to appreciate the everyday things in life that you don’t notice when rushing about in work (I enjoyed the changing seasons). I felt really close to my parents as they cared for me day to day and I found comfort in creativity, drawing, writing and art.

Anxiety, tiredness, restless legs and other nervous system effects of medication and hormone deficiencies had the biggest impact. I became withdrawn, found talking very difficult, couldn’t tolerate loud noises, music, follow conversations or cope with any confrontations. During the withdrawal of dexamethasone I began to think my brain had gone AWOL as I had panic attacks and couldn’t cope with stimulus at all.

What happened after treatment finished?

It was tough getting my life back on track and returning to work, handling my new anxiety, energy and physical conditions and getting accustomed to being partially sighted. I developed techniques to manage the effects and to help me get used to my new day-to-day reality.

The support of friends and family was uplifting but my condition made it very difficult for me to socialise, and I felt pressure to return to “normal”. I felt a need to push myself, taking a new promotion within weeks of returning to work, which I wasn’t ready to cope with.

Starting a part-time Masters degree gave me something else to focus on and work towards other than just getting better. I was incredibly thankful that the medical profession were able to cure my tumour but also became very aware of my own mortality and that of people around me. I felt a responsibility to make the most of every second which also brings pressure.

If you could give one piece of advice to yourself before your treatment what would it be?

My advice to my pre-treatment self would be to value more the support of friends and family and to accept that you’re not going to be on top form when they see you; it won’t matter to them anyway. Oh, and to ditch the red paisley head scarf!

What excites you about working for Shine?

I’m really excited about joining with Shine to be able to contribute to others’ awareness of the help available through treatment, while recovering, and adjusting to the aftermath of cancer and also how it changes you. I appreciate how having cancer early in life interrupts everything, alters your outlook and future, and I also feel the unfairness of incurable diseases limiting lives that are just beginning. I’m motivated to make sure that others going through this are aware of all the great events and support Shine provides. I’m really looking forward to helping young people feel they’re not alone, that they can face this together, and to help them forget for a while the battles they’re having.

Any big plans for 2017?

2017 marks 10 years since my diagnosis. Although the tumour has left me partially sighted I’m enjoying better eyesight following a recent operation. I’ll also be testing a new drug to improve my hormonal jiggery-pokery. I’m making the most of moving from London to Dorset, where my parents and sister (and new nephew) live, and can’t wait for summer by the sea!