Living With Scanxiety

My next PET CT scan date is looming and my major fears about the future have reared their ugly head once again.

Scanxiety is a term used to describe the anxious feelings that arise in the time leading up to an imaging scan, during the scan and whilst waiting for the results to check for disease progression. I’ve read about the term a lot over the past few years as it’s frequently referred to within the cancer community.

Over the last eight years I’ve had countless scans; MRI scans, CT scans and PET CT to name a few. Each come with their own levels of stress and anxiety, especially since my hospitalisation and anaphylactic shock when I had a CT scan a few years ago! I spent the night before Christmas Eve in hospital as a result and it’s fair to say the day itself passed me by and I only woke to eat and went back to bed again as soon as I could. It wasn’t such a Merry Christmas after all. Now I am contrast free and go for PET CT scans every three months, which eliminates the use of contrast, instead using a radioactive tracer which I’ve so far had no issues with.

My anxiety levels have increased over the past few weeks, I’ll go from feeling fine to the brink of bursting into tears on the short walk from my house to the tube station on my way to work each day. I keep having nightmares about my diagnosis; being told Pembrolizumab isn’t working and there isn’t any more treatment that can help me, or loosing my hair again.

When you have cancer, all the focus is on physical health and trying to keep disease at bay. The constant cycle of treatments, particularly with invasive chemotherapy and Immunotherapy appointments over the past four years has meant its my full-time job. I worry often that my mental health suffers as a result, and it’s only in the past year or so I’ve really focussed on trying to get myself mentally stronger. Lately I’ve been feeling as though I am having a bit of a midlife crisis, and dealing with cancer daily is more than I bargained for, more on that in a future blog post!

Despite me being a ‘lifer’ in cancer terms it seems I would be used the routine but in reality it doesn’t make the multiple appointments any less worrying. The ridiculous thing is that regardless of me loosing sleep or not, the outcome will still be the same. What will be, will be after all! What I know is that it is something that consumes my mind from the moment I wake up until I go back to bed at in the evening, there is no rest.

I have been feeling sick and suffering from headaches, which I’m sure are a sign of the worry and stress, or maybe I just need to eat breakfast when I wake up. My experience means that my mind jumps from headache to deadly brain tumour in a instant. I know all the signs because I’ve been there before, so have had a couple of acupuncture sessions in the hope some tension will be relived.

The next few weeks are going to be testing. I’m wishing time away again so I know where I stand.

The Perks Of Pembrolizumab

Last week it was reported that two scientists behind groundbreaking Immunotherapy developments had won the annual Nobel Prize for Physiology or Medicine for their work on Immunotherapy.

This is big (and incredible) news within the cancer world! It got me thinking about all the positives which come alongside taking a newer, cleaner drug like Pembrolizumab. I’m continuing on treatment indefinitely which is hard to get my head around, but It’s safe to say I wouldn’t be alive without it! I just have to suck it up and keep on going.

Professor James Allison and Professor Tasuku Honjo discovered how to fight cancer using the body’s own immunise system, which eventually led to treatments for advance melanoma and has transformed the way it’s treated. My current Immunotherapy drug Pembrolizumab is now also being used to treat other cancers such as advanced lung cancer and Hodgkins Lymphoma. The drugs now offers hope to patients like me with previously untreatable cancer! Believe it or not the duos work began in the 1990s and is now starting to pay dividends!

You can read more about the award and the developments in the news section of the Cancer Research UK website, which also includes a few quotes from yours truly! Thanks CRUK!

I’m so happy that research in the area has been funded so far, but my case is one of many, some not as successful! Hopefully research will continue so scientists can fully understand why drugs work for some people and not others and how it can developed to become even more successful.

Ipilimumab (aka Yervoy), which I took a few years ago was one of the first drugs developed using the scientists discovery, with Pembrolizumab and Nivolumab following closely behind.

I started thinking about all the perks of taking this drug compared to some of my previous treatments. Going through endless cycles treatment is like crossing a battlefield every day. I need to keep thinking about the positive aspects to help keep a positive mindset, and it might help someone else too!

My hair and eyebrows have grown back since my treatment change, for me this is a huge success! I ask look well (partly thanks to the hair and eyebrows!) therefore not like your typical cancer patient; this does wonders for my mental health, but I know often people don’t always appreciate how unwell I am if they can’t see the evidence for themselves.

The side effects for me have been a lot less than on previous systemic treatments, including Vemurafenib which caused me many more problems such as frequent vomiting, skin rashes, bad stomach, headaches and joint pains to name a few. I will sometimes still experience these side effects, but to a much lesser degree than previously. My current main side effects are fatigue and vitiligo, and although these get me down frequently, (see my previous post Tired of Being Tired) I know I’ve come really far over the past two and a half years.

The infusion of the chemo itself is only 30 minutes, I know some people end up hooked up to machines for the best part of a working day receiving other types of chemotherapy. On a really really good day I might only be physically hooked up to a drip stand for a hour or so. Sure, that hour feels like an eternity, and there’s an awful lot of waiting around in between appointments etc, but it could be much worse. Today I had a really long day at the hospital, but I have to remind myself it’s all for the greater good!

Some weeks, when not seeing my consultant or one of my oncology team I only have to visit my hospital for the treatment in the afternoon, making the whole experience far less pain staking!

I’ve spent much less time as an inpatient on a hospital ward that with previous treatments. Three years ago it felt like I was constantly visiting my local A&E due to various side effects and having numerous blood transfusions, but so far so good with Pembrolizumab.

I hope that in the future this drug will be developed into a tablet, meaning a lot less visits to hospital for patients like me, considering how advanced chemotherapy treatments are becoming I would it’s not too much of a distant dream. Until then I just have to grit my teeth and keep going.

Wishing I Was Anonymous

As I come to the end of my two week holiday I’m looking forward to getting back into a routine. As much as I love being away and exploring new places there comes a point where my fatigue kicks and I am ready to rest in my own space and sleep in my own bed.

One of the best things about being on holiday is being anonymous. I travelled alone for seven days after my friends wedding; a whole week where nobody I encountered knew anything about my personal life, to them I was just an ‘ordinary’ person travelling alone, but for me the trip meant more than that. I didn’t have to feel the need to explain myself wherever I went, which was a welcome break for me. I’ve spent the last year worrying that my illness would mean that somehow I wouldn’t make it on to the flight. When I first booked the trip I kept thinking that if I die in the next year, would my family be able to get the money back I’d paid so far?. Morbid but true!

This holiday helped my realise I need to try and stop letting cancer define me. Like it or not it happens to me every day. I can be who I want, sometimes it isn’t always possible, but there are occasions when I can be completely anonymous and free from the poison chalice that is my terminal diagnosis. Even if it’s for a few hours it feels so nice to feel I fit in to the crowd. Looking well is a huge bonus in this situation as there are no questions asked. I enjoyed being a typical tourist exploring a new city.

For the first few days of my solo trip cancer was very far from my mind, however a few days in I received an email confirming my next PET CT Scan at the end of the month, so I am back in purgatory for the next few weeks whilst I play the quarterly ‘will or won’t my cancer be stable’ waiting game. You’d think after almost 8 years since my stage 4 diagnosis and approximately 4 years of active treatment I’d be used to this, but I’m not!

During my trip I noticed some spots of vitiligo getting worse, which I think could be down to overall sun exposure whilst away. Although I wear sun cream constantly I spotted a new area appear on my neck which made me feel really low. This change in skin pigmentation is a side effect of my treatment. Most of my vitiligo is in my torso and legs so not easily spotted by others, but the new area, along with the huge scar on my neck from my original melanoma is much more obvious. I also had a couple of nose bleeds, but I think this is likely to be down to the huge head cold and sore throat I got whilst in Chiang Mai.

When I look in the mirror I see I scars or marks of cancer treatment at every angle, the mark on my neck is another to add to my collection. I have scars on every part of my body from different operations, some more obvious than others; I have a protruding portacath for my immunotherapy treatment, vitiligo, raised scars, tattooed eyebrows and a slightly lazy eye. I had the last eye as a child but it got progressively worse again a couple of years ago so I had it operated on for the third time. The surgeon told me he thought it was very divergent considering I’d already had surgery twice, and the shift could be down to optical nerve damage that may been cause by my brain tumour a few years before. Although this is not necessary why, I can’t help but feel my tumour had something to do with it, because nothing is ever simple in my world. My left eye still remains slightly lazy, another reminder of all the crap I’ve had to go through. I so wish these things didn’t have an impact and I didn’t care, but I really do.

I should look in the mirror and be proud of my body, I know this because it has been so strong and fought back at every opportunity, but there are days when its difficult. The last few days have been hard, with no one there to help distract my thoughts about plans for the day or if the breakfast in the hotel will be good.

I really try not to let cancer define me, not to let it win, and It’s certainly not going to destroy me. When I feel low and depressed its not necessarily one particular thing that I can put my finger on, but a combination of the whole living with cancer package that throws me into turmoil. It’ll be something seemingly small, such as spotting the vitiligo earlier which will push me over the edge and then makes me feel down again.

All the scars and marks remind me there is a extremely unwell person staring back at me. That person is asking for the magic cure to fix everything. I have to dig deep for the mental strength to and carry on, only wishing I had the answer my reflection is looking for.

Being positive and picking myself up each day isn’t always simple, I try to see the good in situations and hope one day I’ll have the answers. I want to feel happy but it isn’t always the case. It goes without saying I’ve had an amazing couple of holidays over the last few weeks, I had a chemotherapy break, so when I go next week it’ll be the first time in six weeks, which is a rarity. America and Asia have been so much fun, but my reality is still the same as it was a few weeks ago, and it’s always hard come back from a good place mentally knowing it’s going to be a bumpy ride.

Can I go back to being anonymous please?

I Should Have Been Dead By Now

It’s almost my 31st birthday. This year, like every year I’m beyond grateful to have had another 365 days on this Earth. Looking back over the previous year I realise how much I have achieved. I might have travelled less than previous years, struggled a lot with my mental health, and seen friends and family less frequently that I would have liked, but I’m still alive. Quite frankly I should have been dead by now. In fact, on paper it should have died years ago.

I was told upon diagnosis in 2010 that people with my type of cancer at such a late stage lived for an average of 18 months. There have been numerous points over the past few years when I truly thought that I wasn’t going to make it for much longer. Having been diagnosed with stage 4 melanoma in two sites (brain and lung) at 23 it was a shock I made it to my 25th birthday, let alone my 30th last year.

Any money I have managed to save during working life has gone towards living a good life when I’ve worked less, paying for been able to live independently when I’ve been signed off sick from work for weeks on end, or going on trips and holidays to make the most of life when I’ve been feeling well enough. Saving towards a house or something more substantial feels impractical because I’m not sure I’ll have a future to be around and enjoy it. Now I’m 31, but I’m not sure how much ‘good’ time I have left.

Two years ago I was in hospital, having had surgery to remove cancer from my bowel for the second time. I had hardly any hair of my own, and what I did have was unrecognisable from my usual self. Four years I was also spent my birthday in hospital, having initial been admitted for suspect appendicitis at St George’s Hospital in London. It turned out to be my first bowel tumour and marked the start of me receiving systemic cancer treatment in hospital every few weeks.

I do feel as though I put pressure of myself to do things whilst I am well enough and feel able, therefore making the most of the time I’ve got left until I start to deteriorate. In reality I want to make the most of things, however lack of time and energy are huge factors. Naturally I want to make most of what I’ve got now, but I also need to stop, look around and appreciate what I have. It might not last must longer, so I need to pause and take stock. Some days are better and others are much worse, and accepting that has been one of the hardest parts of living with cancer.

When I was in my early 20s I thought I wouldn’t see my younger siblings grow up. Now they are grown up and are taller than I am! In a way time flies, but the long road has been full of twists, turns and more than my fair share of major challenges along the way. I’m often trying to charge forward in life and catch up with all my friends along the way, but I need to accept this is unlikely. Just to be alive and well feels like a miracle sometimes.

I should have been dead by now, but I’m still alive and considering my dire prognosis it’s a huge win for me to be doing so well.

Another Hospital Stay 

On Wednesday I’m due to go into hospital for another short stay, my first and hopefully only one of 2017. Just another day in the life of a stage 4 cancer patient! This time it’s not for Immunotherapy, but for an operation to remove the piece of metal that is protruding from my head and causing me pain. In my post Not Just In My Head I wrote about how my craniotomy scar has caused me a lot of pain over the years, and finally finding out why this was a few months ago. After a couple of consultations and different scans, it appears that the rogue piece of metal is a surgical staple or crainial fixer that was originally used to connect two pieces of bone in my skull back together after my brain tumour removal in 2010. Naturally there shouldn’t be anything poking out of my head! I could try to leave this as it is, however the area around the scar site swells up intermittently, so needs to be dealt with to stop causing me pain.

Last week I went to a pre-operative assessment appointment at the John Radcliffe Hospital in Oxford. During the visit I had various tests to make sure I am fit and well enough for surgery, including an ECG, MRSA swabs and blood tests. One of the nurses in the Nuerology outpatients clinic explained the whole procedure to me, and gave my a swag bag to take home with mouthwash, antiseptic cleanser and nasal ontiment in preparation for surgery. Being a bit of a pro and major operations I had used these before so wasn’t particularly phased by the procedures. The smell of the antiseptic cleanser reminds me of hospitals so I’m sure I will fit right in. Although the operation requires general anaesthetic it’s isn’t major surgery, such as having a tumour removed, it isn’t a life or death situation, but it’s certainly not common or without risks. I am also pretty sure it isn’t supposed to happen! In an odd way I’m looking forward to getting it over with so I can finally lean on both sides of my head again. 

Back in February I returned to the John Radcliffe hospital for perhaps only the second time since my major surgery at the end of 2010. During my consultation I saw the surgeon who performed my original operation, a man essentially credited for saving my life at the time. He explained the removing the fixer is a fairly straightforward procedure, which is always good to know, but that it wasn’t your every day occurrence. I’m not sure what has caused it, but these random things always seem to happen to me, so I’ve learnt not to be shocked. I always seem to be reminded that I am ‘not the norm’. The Surgeon asked how I had been since I last saw him, and remarked that I looked well, to which I responded ‘well, I am still alive so that a bonus’. A bonus indeed given the dire prognosis I had, expecting the surgery might buy me more time, a few months at best rather than years. 

Often my hospital stays are not planned, so at least this time I am able to pack and overnight bag. I’m really glad I will be seeing my old Surgeon for the operation, it makes me feel much calmer knowing that he knows my case and isn’t just going in there blind. More often that not I’ve found myself in an A&E hospital bed with no clean clothes or a phone charger, so planning ahead feels like a bonus. There is nothing worse than feeling unprepared and uninformed.

I keep reminding myself it’s just a short hospital stay and a few stitches so I am hoping I will feel fine by the weekend. Now I’m off to remove my nail varnish in preparation.