The Rough And The Smooth

I used to find it so clichè when people described having cancer as being on a rollercoaster, but at the moment, it feels like one of the best ways to easily articulate daily life living with stage 4 melanoma.

In my previous post I mentioned that amazing news that my last PET CT scan results were stable. Despite this, I have felt very up and down over the past three weeks. Sometimes I find living with the side effects of cancer treatment can be harder that having the treatment itself.

Sadly the results don’t mean all my side effects from taking Pembrolizumab disappear over night, it’s probably quite the opposite as somehow I feel more aware of my body than ever before. Living with cancer has so many ups and downs, it’s mentally challenging and know from experience that the good news can change to bad very quickly.

Last week I dreamt I had five brain tumours, not one, but five! Negative thoughts like this will always haunt me, and dark clouds will follow me around wherever I go. I worry so much, particularly about getting a brain tumour. I had one removed when I was initially diagnosed with stage 4 cancer in 2010 so for me this isn’t an irrational thought.

Over the past few weeks I have been attending regular CBT sessions in order to help me manage my anxiety surrounding my diagnosis and the depression that comes with it. It is hard to accept that having been labelled as terminally ill it essentially means I am dying. It might not be today, or tomorrow, or in a month or perhaps even a year, but one day cancer will get the better of me. For all those people who suggest I could get hit by bus tomorrow and die instantly so I shouldn’t worry; trust me it is not that same thing. At the moment I’m taking each day as it comes, taking the rough with the smooth so to speak. When I’m in a negative spiral it can often take a little longer to ride out, even though I try to be a positive as possible.

According to the NHS website, Cognitive behavioural therapy (CBT) is a type of talking therapy that can help you manage your problems by changing the way you think and behave.

It’s most commonly used to treat depression and anxiety, and is based on the idea that negative thoughts and feelings can trap a person in a vicious cycle. The therapy aims to help people deal with problems that feel overwhelming in a more positive way, by breaking them down into smaller parts. Essentially learning how to change negative patterns and become more positive, looking for practical ways to improve a persons state of mind.

Through my experience so far I think CBT has been beneficial, however as I write this I am mid hospital appointment, having just broken down in tears. A hospital is the last place I’d ever want to be, but I don’t have a choice about coming to have treatment. Sometimes it’s all too much, even if the appointments are running to time. It’s not one particular thing that makes me emotional, it’s the whole treatment process. A classic example of a day which had been pretty unstable; I feel like I’ve experienced so many emotions in one afternoon. Hopefully tomorrow will be a better day and the CBT will continue to help me move forward living with cancer.

This July marks two years on current wonder drug Pembrolizumab and 7.5 years of living with stage 4 melanoma. Any tips on helping manage emotions would be much appreciated.

Down To Earth With A Bump

I’ve taken a bit of break from blogging over the past month, it wasn’t a conscious decision, but a combination of a new job and various busy weekend activities has meant finding time to sit and write hasn’t been at the top of my agenda. When I’ve had some down time, my priority has been to eat and sleep and generally prepare myself for the next few days ahead.

Generally things have been going well, and I am due another PET CT scan in a few weeks time. However, I was feeling almost on top of things until earlier this week, when an unexpected headache lasting almost four days bought me back to down to Earth with a huge bump. However much I try to push it away, cancer always ends up at the forefront of my mind. It’s a reminder that my cancer will never go away, I will not be one of those patients who gets to ring the bell in the chemotherapy suite at the end of my treatment whilst onlookers cheer and clap, celebrating a successful voyage into a life post cancer. I find that whole process very strange, but I know my headache was a reminder this won’t be me.

There are many reasons for headaches, my suspicions says it was due to not drinking enough water, stress and tension; but another part of me will always fear it’s a reoccurrence of brain metastasis. I know too well that this is not an irrational thought, having joked to friends years before that my symptoms suggested a brain tumour, only to find out a short time later that I was right all along. Usually I like being right, but not then.

Having drank copious amounts of water over the past 72 hours I’m feeling much better than at the start of the week, both physically and mentally.

I’d been panicking a lot over the past few days, I know things could be much worse right now, but I also know I’m not ready to die yet, and the thought of having another brain tumour filled me with fear, most likely making the headache ten times worst. It was a huge reality check. My life is never going to be easy or plain sailing, but I am doing well right now, and I must keep telling myself that. There are so many more things I want to see, do and accomplish in my lifetime, even if it’ll be short. I am not ready to go, death isn’t on my to do list in the near future as far as I’m concerned. I don’t think I’m scared of dying, but worried about leaving others behind.

Now I’ve come back down to Earth with a bump, I’m going to take some more time to rest and hopefully start to feel on good form again, even with my next dose immunotherapy just a couple of days away.

Not Just In My Head

I am currently waiting for a referral to be seen by the Neurology team in Leicester. After I had my brain tumour removed in November 2010 a small lump formed on my head after my craniotomy. Over the years the small pea size lump has given me a fair bit of pain, to the point where I haven’t been able to lean on one side of my head for fear of aggravating it. Sometimes it would weep fluid and become enlarged, which I put down to putting too much pressure on it when I slept.

I expressed my concerns to my Oncologist about a year after my operation and was then sent for an ultrasound on the area. I was mortified when the Sonographer suggested I lift up my t-shirt in order to begin the ultrasound. I guess he assumed I was pregnant, so told him that no, I wasn’t and I was there because of a small but very painful lump on my head post tumour removal. Luckily, he was apologetic and nothing sinister showed up on the scan. I let it go and decided I just had to deal with it and accept it was just an irritating reminder of an awful time but a small price to pay for life saving surgery.

Over the years I’ve mentioned the lump numerous times to friends and family, not quite sure why it still caused me pain so long after my operation. It turns out that I had a reason to moan after all!

I noticed recently that the lump on my head has appeared to have disspeared. At first I thought this was great news, however realised there was a scab forming in its place. I tried to pick it off but it didn’t work, and when I asked my mum to take a look she commented it liked like metal coming out of my head, perhaps a staple of some sort protruding from the area where the lump had been.

I contacted my Oncology team, baffled as to how and why this could happen. Perhaps the lump was some sort of infection covering the metal the whole time?  Who knows! I’m hoping it can be removed as I keep catching it when I wash my hair, and getting rid of it would stop the sensitivity in the area. Better out than in as they say! I’ve got enough scars and war wounds as reminders of the past 11 years, I don’t need another one to add to my collection. It just goes to show that both the physical and mental scars of this part of my life will always be with me in some form. 

It’s sounds strange but it’s good to know it’s not just in my head. I always suspected something wasn’t right, I know my body and often joke with friends that I’m always right about these kind of things. I knew before I had my most recent bowel operation that there was no way I could feel so bad without something being very wrong.

I am glad I finally know the cause of my pain, and don’t have to keep dismissing it as ‘just one of those things’. Hopefully the Neurology team will have some answers for me when I see them. Nothing is ever simple when I am involved.