Cognitive Behavioural Therapy

I recently came to the end of a counselling programme which focussed the talking therapy Cognitive Behavioural Therapy (CBT) to help me manage my depression and anxiety. I wrote about starting this journey in an earlier blog post, The Rough And The Smooth a few months ago.

I was initially referred for this treatment at the end of 2017 and I have been attending regular CBT sessions since April in order to help me manage my emotions and thoughts around my cancer diagnosis. It’s not easy to rewire your brain to think in a completely different way, but it’s helped me a lot, and I’m hoping I’ll be able to continue using the techniques I’ve learnt so that I don’t fall back into a negative thought cycle.

Over the past few sessions I’ve practiced various different techniques used in CBT,  one I’ve found particularly useful so far is Thought Challenging. This technique allows a person to look at a situation from alternative angles. By doing this I’ve started to consider things from a more objective point of view, rather than just assuming that my negative thoughts are the complete facts, so not necessarily about just thinking positively in a negative situation, which is often a particular challenge!

A simple example of this may start with a friend cancelling dinner because they’re busy at work. My irrational brain tells me that I am not important enough and worry they think I am boring or I’m constantly talking about my cancer diagnosis or my own issues, therefore I am not a good enough friend to them and they don’t want to see me. So many thoughts run through my mind about the reasons why they cancelled. Keeping a Thought Challenging diary has allowed me to weigh up the for an against and come up with an alternative thought. Now I can be more rational and recognising we’re all busy people, particularly when work comes into play. In the grand scheme of life its simple to reschedule for another time. It’s key for me to remember I am important and that I am lucky to have a lot of people around me who are always there to listen no matter what, even though some live thousands of miles away!

Through this process I’ve learnt that I tend to think in a very black and white way, (know as All-or-nothing thinking) which has had a significant negative impact on my self-esteem, happiness and relationships over the past few years. I’ve tried to overcome this by keeping a list of my negative thoughts and writing down different ones. I have to remind myself that this thought is extreme and in turn come up with one that is more balanced. Another example would be me calling someone and them not picking up the phone; I’ll start to panic that something really bad has happened to them, even though they’re probably just busy at that time. Similarly, if someone says they need to go to the doctors my mind will automatically worry they might have a serious health problem and I constantly fear awful things will happen to my loved ones

During my life with cancer I’ve been taking everything one step (or one PET CT scan) at a time. I’m often surprised I’ve not had a breakdown over the last eight years. Sometimes I get emotional and feel like I’m in full on mid-life crisis mode (I am now in my 30s after all) so CBT has been a great way to try and combat that! I’ve yet to try and revisit my youth, or buy a sports car,  so perhaps I’ve not had a my own crisis moment just yet! I always feel like cancer means ‘I can’t’ do things and there are so many other things ‘I should’ be doing. Thinking in this was is unrealistic and therefore I put too much pressure on myself.

Staying alive is on the top of my priority list, and despite all the challenges that have come my way I’ve succeeded so far. Although difficult at first, CBT has been a lifeline as it has helped me find was of copying with all the negativity my illness throws at me. I am now waiting for a referral for another type of counselling that I hope will help me move forward further. In my last CBT session I wrote down my future goals for the short, medium and long term and I’ll need to keep looking back at it to make sure I’m following my own advice. My first goal over the next six week is to try and maintain a more positive outlook, my recent promising PET CT scan results have been a huge factor, so here goes…

Facing The Chop

I’ve been lucky enough to have my own hair (minus a wig or extensions) for almost 9 months. I can’t get over how much it’s grown, it feels like the old me, circa 2008 is back again. Now I’m 10 years older but quite possibly not any wiser.

Since my regrowth I’ve wanted to let my hair grow and not touch it at all, and I’m faced with a huge anxiety about facing the chop. Why would I want to cut my hair when loosing it meant I had so little confidence? I spent countless nights crying myself to sleep and moaning to my friends about my lack of hair and subsequent ‘cancer patient’ hair styles that it seems like cutting it would feel like going backwards. I now have a full head of thick hair but the confidence is still hugely dented. It’s one of the many things around my illness which causes me anxiety.

When I initially started systemic treatment four years ago I was told to my relief I wasn’t going to loose my hair. After various changes in treatment I did end up loosing the majority of it, with what was left turning into a frizzy afro texture.

First I had to get used to the fact I was having treatment but didn’t look conventionally unwell, then I had to get used to obviously looking like a cancer patient. I finally did this and managed to embrace wearing a wig, after all I had straight, neat hair for once in my life so tried to see that as a bonus! I also lost all my eyebrow hair so got tattoos so I could feel ‘normal’. Then, with more hair changing I got extensions, which aren’t as easy to manage as one might think. Now I have to get used to the ‘old me’ making an appearance, only I’m not that person anymore, I’m a completely new one still undergoing treatment, however to a another person in the street I look 100% healthy. It looks much harder than it seems.

When my hair started to fall out I wasn’t mentally prepared, I didn’t expect it so I was really shocked. I thought it might just be a little bit, but when the bath plug hole was so blocked the water wouldn’t drain properly I knew I was in trouble. In one way I thought if I really believed my hair wouldn’t fall out then somehow it would all be ok. Given the original advice given I failed to buy a wig in advance in preparation.

During some of my worst times I used to dream about having long flowing hair again; and being able to tie it back. I’ll never take that for granted but now I have it I really don’t want to let go.

I now have more than enough hair to colour and cut into any style I want, but I can’t face it! My hair could do with a little refresh and a couple on inches off the bottom but it feels like too much too soon after my original trauma, it took so long to grow back after all.

At the moment, I feel ok that it’s a bit of a mess because it’s all my own hair, I’m never going to get a medal for best hair style, but I really don’t care. I know I’ll have to face getting it cut in the not too distant future, but I want to hold onto the growth; to this moment of success within my treatment journey, it’s a small win, but it’s a win all the same.

Has anyone else felt the same about hair cuts post chemo growth, or is it just me?! Perhaps in the future I’ll change drugs and it’ll fall out again, so I want it for as long as possible. I know it’s slightly illogically, completely irrational and silly of me, but having cancer does strange things sometimes!

The Cost Of Living

I am now back living in the post holiday world of all work, very little play and many, many hospital appointments. I returned from my trip to America earlier in the week (see my vast array of holiday snaps on my instagram feed) and have already been for two blood tests, to my local pharmacy to pick up a prescription and had an appointment with a nurse at my local GP practice. Next week I’m due to visit Leicester Royal Infirmary for a consultation with my Oncologist and to receive my next dose of Immunotherapy. I also due to go to Cognitive Behavioural Therapy and have another appointment with the nurse at the end of the week. Having stage 4 cancer is a full time job, and it can become really tricky to try and fit everything in around the day-to-day life of someone in their early thirties. I have to make sure I write things down in my phone calendar and my hand written diary just to make sure I don’t miss anything, as it can be all consuming.

Despite my obvious frustrations and the frequency of these appointments it’s all part of my life living with cancer, a term I’ve coined ‘operation stay alive for as long as possible’. Each time I have to remind myself how lucky I am be able to have access to the National Health Service and everything it offers. Despite the constant bad press hospitals up and down the country get about long referral list and A&E waiting times, I still love the NHS.

The NHS turned 70 last week; having been born ten weeks premature I have benefited from various services my whole life and I certainly wouldn’t be living the way I am today without it. The resources that are put into cancer care have kept me alive 8 years after being told I’d probably only have about 18 months to live. I may have to travel a long way for my treatment, which is partly through choice, but I would take that any day over the alternative. My hospital have been amazing from the get go and I feel safe in the hands of the specialist teams there.

The cost for me to live is phenomenal; I read that Pembrolizumab costs over £1000 per 50 mg and the recommended average treatment every three weeks is approx 200mg. It’s definitely not small change! I know I wouldn’t be half as fortunate if I were born in another country, so when I get upset, frustrated and angry on my way to appointments I have to remind myself that the cost of living is high, but I am one of the more fortunate people. I guess it is Ok that there isn’t any free wifi or free parking with a Blue Badge at my local hospital if they are keeping me alive – it’s far cheaper than paying for private treatment elsewhere! My status as a member of the cancer club means I also received my prescriptions free of charge. A few years ago I had two cycles of another drug, Ipilimumab which cost that NHS approx £20,000 per treatment. I was initially meant to have four cycles but my cancer began to grown more rapidly and I had to quickly swap to oral drug Vemurafenib (another costly drug) in order to try and stabilise the disease before it killed me.

According to the latest publicity report the NHS treats more than 1 million patients every 36 hours, the maths to work out how many that is across one year is far too much for me to comprehend. I really hope Brexit doesn’t have a negative affect on the treatment I receive and impact the potential for any newer life extending drugs that may be developed in the future. The NHS and the wonderful people that work for it are there from the moment we enter into the world until the moment we leave. The NHS will treat patients no matter what; it’s a service for everyone regardless of status or background, rich or poor, young or old the NHS caters for all. Here is to another 70 years and more.

Thankful to still being kept alive.

The Struggle Is Real

The never ending struggle of living with stage 4 cancer is very real, and sometimes it appears that I am coping really well, even when I am not. Recently I have had to accept that I need a bit of help as I haven’t been doing well over the past few months. Late last year I felt I was in a dark place and was prescribed antidepressants by my GP.

Being surrounded by positivity and wonderful people helps a lot, but it’s ultimately not a solution. Cancer is lonely and isolating, which means I struggle with my diagnosis daily. As I’ve mentioned in previous blog posts I frequently feel very lonely and I am not ashamed to say I cry about my situation often. I have points where my judgment is clouded and I struggle to see the positives, as they hugely outweighed by the negatives. Who wants to wake up in the morning thinking about their impending death? Melanoma is a death sentence which I cannot change.

No longer having the typical visual side effects of cancer and holding down a job may sometimes mean people don’t realise how much I am struggling to get by. I think I often make it look easy, I look well but I don’t feel well. This is by far the hardest thing I have gone through, and will ever go through during my lifetime. Unless you’re in my shoes it’s hard to truly relate. Of course, I do have good days where I feel like I’m powering through, and they feel great, but increasingly they are few and far between.

It’s my priority to feel well in myself, but sometimes my lack of control means that isn’t always possible. I try to try forget my woes, even if it’s just for five minutes in a day. I have a new job, and am starting to focus on my new challenge, the Lake District 5 Peak Challenge with Trekstock in April. I have been making the most of being in London and having down time, rather than trying to do too much, which I wrote about in my last blog post Finding My Focus. I have made an effort to go to my favourite local places, go to the cinema, or listen to my current favourite music (The Greatest Showman and Hamilton soundtracks are amazing!).

There are times in the past when I could have taken antidepressants, such as when I had surgery to remove my brain tumour eight years ago, but I just focussed on getting through each hospital appointment. These tablets ultimately won’t make a difference in terms of how Melanoma affects me, but they have started to help me feel less like bursting into tears every five minutes. The injustice of the world upsets me often, and it all comes back to my lack of control or choices I have in my life. This is one of the reasons I choose to raise money for charity when I can; often unless something touches someone’s life personally they may not think about trying to raise funds, but I’ve seen first hand gaps in the support system for patients, and the astronomical costs of life extending cancer drugs on the NHS.

When you look at television adverts or posters, cancer patients are often seen in a positive light, overcoming illness and defying expectations. I guess this is meant to reassure us that cancer can be beaten by everyone, but it is often hard to comprehend the true reality. So far, taking antidepressants has made a significant shift in how I feel; I still struggle every day but the sadness and frustration feels less overwhelming. It seems there can be a stigma surrounding taking antidepressants, but It is clear that I need a little help at the moment.

I have been feeling depressed for several reasons. The most prevalent feelings being that I am scared my cancer will no longer be stable, and I will suffer immense pain and die. I also know it is such huge factor in my life an there is no ‘putting it all behind me and moving on’. After all, I am still  having treatment and getting scanned every three months, and will never be cancer free, it will always be part of my life. I am not trying to be attention seeking, I am just trying to be honest about the realities of life with a terminal cancer diagnosis, its important to know that the struggle is real. Very real.

World Mental Health Day

World Mental Health day took place this week, and I saw lots of long posts on social media about the importance of looking after all aspects of our health. The day aims to draws attention to the importance of mental health and increase education on the subject which people often shy away from. Having stage 4 melanoma has hugely impacted both my mental and physical wellbeing. Knowing that I am dying, that something inside my body is killing me, and I’m constantly having to fight it off is often too much to process. 

Receiving a diagnosis of a serious illness such as cancer can have a huge impact on a persons mental health, and I have felt this over the past few years, particularly since receiving different chemotherapy and immunotherapy treatments. Thanks to my terminal diagnosis It is normal for me to experience huge levels anxiety, worry and fear on a daily basis. I touched on this previously back in April in a blog post called Maintaining Mental Heath, which focussed on the importance of exercise, It’s amazing how much a little exercise can help mental wellbeing. I sometimes take part in the occasional Parkrun, my time has actually gotten worst since I first went, but I do feel better for taking part. I tend to walk / jog the route, but its better than not doing it at all. I’m focussing my breathing rather than all the other negative thoughts that cloud my mind every day.

Having cancer is so draining, and the frequency of doctors appointments and hospital visits often adds to my anxiety and worry. Over the past seven days I’ve been to the GP twice and the hospital once, and I’m due to go in for immunotherapy tomorrow. Sometimes it just feels like too much! I’d love to escape somewhere for a few weeks with no hospitals around.

I’ve read a lot about Post-traumatic stress disorder and the effect it can have on cancer patients. People experience flashbacks and panic attacks as a reaction to exposure to very stressful and traumatising events they’ve experienced in the past. I’ve truly never really appreciated being mentally well, and the impact being unhealthy can have on a persons life until mine completely changed. I’ve always been a stressed person; school and studying at University were huge challenges for me, constantly worrying about deadlines etc, but that’s nothing compared to the way I feel nowadays. I once tried to see a psychologist when I was first diagnosed with stage 4 melanoma, but back then I felt worse for it. It was another trip to the hospital I just didn’t need! All my friends were embarking on new careers whilst I wasn’t well enough to get out of bed in the mornings, let alone go to work, and talking about it felt like a constant reminder of what I had lost. Years later I tried to seek counselling, and was fortunate enough to be referred by my GP to a local service in London. The idea with the sessions meant I had to commit to seeing someone for at least twelve weeks, however as I was about to mention this to my work I found myself back in hospital undergoing life saving surgery.  I never managed to make it to my first appointment, and since then I haven’t attempted to try again.

I know that I will always continue to experience these negative feelings and sadness because I am still having treatment. I am about to undergo my 23rd cycle of Pembrolizumab. There is still no end in sight, my treatment will continue, and I know I have to try to accept this. There is no being ‘out the other side’ of cancer.

Being in the know is very helpful when it comes to my diagnosis, I like to have as much information as possible so I feel like some things are within my control. I had a PET CT scan late last week and will get the results in three weeks time. I hope it will be ok, but I don’t think I can ever be that confident it will be. Ultimately it won’t be ok, and the longer I am well, the closer I am to becoming unwell again. Yes, it being mentally draining is an understatement! I live my life in cycles of twelve weeks, so I am really hoping I can continue on Pembrolizumab and refocus after I received the results. I really want to enjoy Christmas and New Year.

As I get older I find mental health problems seem more common than I once thought, but perhaps that’s part of being an adult and being more aware. Sometimes it’s ok not to be ok, I know I have both good and bad days, and have to accept that. Tomorrow is a new day as they say! I’m sure there are some people reading who have or will be effected by mental health during their lifetime, either themselves or by knowing family or friends who have struggled. Luckily I have a strong network of people around me to talk to, as well as using this blog as an outlet for my feelings.