What A Difference A Day Makes

I had a very busy weekend, with a much anticipated theatre trip to see both parts of Harry Potter and The Cursed Child followed by a day trip to West Sussex on Sunday to walk from Amberley to Arundel with some friends.

I’ve been pretty busy over the past few weeks, including during the weekends, and felt like it all came to a head yesterday after I had my PET CT scan in Leicester. My body felt exhausted; I guess It was a mixture of aching from the walk, lack of sleep, lack of food as I was only allowed water prior to the scan, and a recently shoulder injury. Luckily, desipte not being able to be cannulated via my portacath the scan went ahead as planned.

I got worked up and anxious when I was told a nurse wasn’t available to cannulate me via my portacath. Previously I had been sent away from a PET CT scan after two unsuccessful attempts to put a cannula in my arm and had to come back another day for the scan to take place. At the time it was very distressing as I travelled to Leicester on my own for the scan, thinking I knew what I was letting myself in for. I’ve learnt that with cancer I never know what I am letting myself in for!

Over the past couple of years my portacath has been my saviour and I’ve not been to a scan on my own since. Fortunately, one of the radiographers managed to put a cannula in my arm on the first attempt so the radioactive tracer could be injected into my bloodstream. Considering how many times my veins have failed me I was pretty impressed. Now I have to arrange another visit to the chemotherapy suite for my portacath to be flushed (never a dull day!)

After the initial hiccup my scan went smoothly, I did my usual hour long wait once I’d had the tracer injected and then spent 45 minutes being scanned form head to toe. I am due to see my consultant for the results in the next month. Each scan comes with its own level of stress and anxiety, especially since my hospitalisation and anaphylactic shock when I had a CT scan a few years ago. As the months pass and I learn to live on my new ‘watch and wait’ routine I can’t help but feel like my world could fall apart again at any moment.

I felt really unwell after my scan on Monday and had to go back to bed when I returned to my mums house. I slept solidly for almost three hours, and it just goes to show what a difference a day makes.

Twenty-four hours earlier I was waking through fields with my friends, feeling energised without much worry, and within such a short space of time I felt like an invalid. When I tried to get out of my dads car when I got back I felt like I’d suddenly aged 40 years – walking seemed so difficult and I felt sick and exhausted. All I’d done is lay there in the scanner but it took so much out of me! It felt as though I’d just come home from treatment and my body was drained of energy.

I don’t often share the moments when I physically struggle online, because I want to focus on the positives, but also because ‘dear diary, I was exhausted so spent the day in bed’ doesn’t have the same ring to it. It hit me hard, but I need to keep my head up and keep going.

That ever changing 24 hour period was a harsh reminder of how fragile life with cancer can be. I am slowly beginning to feel better, after some research, Dr Google suggests I might have a trapped nerve which is causing shoulder and neck pain, so have booked in for some more acupuncture in the hope that the symptoms will be alleviated. I know I should really google me symptoms either!

A cynical voice in the back of my mind is linking the pain to disease progression, but I don’t want that negative energy to impact me. I haven’t had any other worrying symptoms over the last few months. Another part of me thinks my oncology team would ensure I get the results much quicker if there were any red flags from their end.

The next few weeks are going to be testing, and I really hope Scanxiety doesn’t kick in. It’ll be easier once I know where I stand so I can breath again.

Independence Day

I write my latest blog post for America on July 4th, celebrating Independence Day with one of my oldest and closest friends. Unsurprisingly I’ve felt really happy and content during our trip so far, as I’m removed from the realities of my daily life. It’s exactly two years since I started taking Pembrolizumb after my second bowel surgery to remove a tumour from my small bowel.

Thanks to Pembrolizumab I’m celebrating another kind of Independence Day; one that is free from cancer and all the worries that come alongside it. I’m in full on vacation mode right now and it feels lovely to have a long break from work and get some headspace.

Ten years ago at the age of 21 I studied in America as part of my university degree and I made some incredible friends from all over the world along the way. I was lucky enough to be a bridesmaid for one of my closest friends in Maryland over the weekend. America and the people I met remain very special to me, and I feel very fortunate I’ve been able to return to the states over the last decade, even though there have been times when I felt it would never be possible again.

Looking back, I wish I’d gone travelling on my gap year, however nowadays I feel even more grateful that I was able to experience living in another country as a young 20 something.

Health insurance can mean the America ends up being one of the no-go places for cancer patients, particularly those who haven’t been given the all clear or are classed as in remission, however I managed to get a reasonable insurance cover policy through a company called Insurance With. They recognise Immunotherapy treatments alongside chemotherapy which has made the insurance process much easier.

I’ve been caught up with everything at home over the last few months; a new job, moving house, a charity trek and the never ending cycle of hospital appointments. So much so that I hadn’t realised I need to take some time out. Walking through a stunning National Park yesterday made me feel like I hadn’t a care in the world, I’ve been so relaxed in the beautiful setting in Maine I’d even forgotten what day it was. I’ve been spending time with my oldest friend who I only see around once a year, so it’s even more special. If you follow my social media you’ll see my various holiday photos.

Often I feel as though I’m living in the shadows of the life I had before, but not today. Despite tiredness and aches and pains from hiking up a beautiful mountain yesterday I’m ready for a new day. It seems crazy to think just over a week ago I was having Chemotherapy back home, my 34th cycle of Pembrolizumab. What a difference a few days can make! I have vivid memories of having this drug for the first time; I remember the smell of medicine and cleaning products on the ward and the long wait for treatment whilst sitting in a side room. I thought the wait was a one off before I understood how the drug is made at the hospital pharmacy.

Two years is a long time to constantly receive treatment, especially as I’d been on other treatments before, but I’ve been given another two years of a good life, so no complaints there.

Happy Independence Day!

The Waiting Game

I am now playing the waiting game, having had a PET CT scan last week to check for any disease progression. I am keeping everything crossed and hope more than anything that my scan indicates my cancer has remained stable over the past few months.

Due to a Christmas break and Easter holidays It’s been over five months since I had my last scan, so I’ve had an extra long break from the anxiety that usually comes every three months. It’s safe to say if something is wrong I’ll be kicking myself for not having had a PET CT scan sooner.

Luckily I’ve been fairly busy over the past few days, which acts as a good distraction from all things melanoma related, but it doesn’t make the thoughts and feelings go away all together. I’ve had a few nights where I’ve been laying awake panicking about dying, a very real concern, but a very unhealthy thought process.

Waiting for results is the worst past of cancer treatment, my mind races with so many different thoughts it’s hard to keep on the right track and keep a grip on reality. In the past week alone I had three different medical appointments on three separate days, which in itself is exhausting. Having stage 4 cancer is a full time job and it will always be more important than anything else going on in my life.

My last four blood tests have shown I’m suffering from anaemia, which is not at all unusual for me, but is a bit of red flag. I’m normally boarder line when it comes to my haemoglobin levels, so I’m now taking iron tablets prescribed by my GP religiously in the hope they will help me feel less exhausted. I’m off to the Lake District to do the 5 Peak Challenge for Trekstock next week so I need to be on top form. I just hope it doesn’t lead to a blood transfusion!

When I had my PET CT scan last week I had a problem with my portacath. Over the last 12 months It’s been completely reliable, taking away the anxiety and stress of having a cannula fitted or blood taken every few weeks. Despite the nurses best attempts my portacath refused to bleed back, even though it was flushing normally. In the end I had to have the radioactive tracer for the scan injected via a vein in my arm, which was not ideal, as I have the world’s most pathetic small and thin veins! Luckily it was fine in the end, however there was probably about 20 minutes of failed attempts when my anxiety levels were through the roof (I previously had a couple of extremely bad scan related experiences).

Hopefully my portacath was just having an off day and will flush ok when I go for my next chemo appointment, otherwise I may need medicine to help unblock it! It’s the least of my issues but certainly adds to the stress of the whole treatment process.

Keeping everything crossed for my results!

Tired Of Being Tired

I have now been living with cancer for 12 years, and today marks my 7 year stage 4 diagnosis. At the time, being alive and well at the age of 30 seemed impossible. There are so many conflicting emotions around particular dates such as this one, I am sad I feel I have missed out on so much, but am hoping there is much more to look forward to in the not to distant future. If I can make 7 years as a stage 4 patient who is to say a couldn’t make another 7! I literally owe my life to those developing new treatments and the healthcare professionals that have chosen cancer as their specialist subject.

The issue that has been haunting me most of late is that for me treatment doesn’t have an end point, and I struggle with this often. I’m tired of it. This is not a temporary situation which I can learn to power through, every aspect of my life until my dying day is governed by this illness. Having immunotherapy every three weeks has become the norm. I often grieve for the life I could have had without cancer, but It hasn’t broken me yet. I guess I have probably learnt a lot about myself in this time. Sometimes (not always) I feel I am now a stronger person for what being ill has taught me.

Coming to terms with the physical changes cancer has had on my body has been an extremely challenging task, not to mention the impact on my mental health. Hospital visits make me particularly emotional and sometimes I burst into tears so quickly, and then my mindset will be negative for days on end. It’s small things such as having to cover up my portacath, or not wear something too revealing as I don’t want to exposes too much of my sensitive skin to the elements. Lucky, winter is slowly setting in so I’ll fit right in.

I live life in a different way now, the pace is slower than I would like, but I cannot change it. Sometimes I get on ok, other times I want to scream at anyone who claims to be tired. TIRED? You don’t know the meaning of the word. Exhaustion comes in waves, and when it does hit seems to effect me in an instant. And I am one of the lucky ones. It is as if somebody clicks their fingers and my energy levels plummet straight away. As soon as the drugs are pumped into my blood stream I become a total zombie. My legs feel like I’ve been hiking up mountains for days on end, I’m going to end up needing one of those fold out camping stools for when I just can’t walk any further.

My thoughts don’t seem to make sense anymore, like a ‘glazed over’ feeling of not quite being in the room. I had no idea what exhaustion was really like until I had chemotherapy and immunotherapy; even the thought of being active exhausts me. I just want to be able to click my fingers and be in bed with a large pizza. That’s one super power I would love to have.

There are so many ups and downs during each cycle, as soon as you get over one intense period of treatment its time to begin the next cycle all over again. Nothing ever seems straight forward, after some appointments I’ll feel sick, others will give me a bad stomach or a rash. All very bearable of course, but aside from the fatigue there doesn’t seem to be standard reaction each time I have treatment. This is typical of me, as I’ve been told many times I am ‘not the norm’.

Over the past few days I’ve know I’m  in a bad way as I’ve been caught at the barriers at London Underground stations. So embarrassing, but funny when you think about it. I tap my Oyster card and the barriers open, yet somehow it takes my brain a while to figure out I should be walking through. My mind and body are slower to react, and I end up being one of those people who get their bags caught because they weren’t paying enough attention, much to the amusement of others.

Suffering from this kind of fatigue and trying to resemble normality is exhausting. I’m tired of being tired. It’s taken me ages to finish writing this blog post as I just haven’t been able to find the energy. I am not even sure I remember what it’s like to feel awake and energetic.

I’m powering through this week, but by Monday I should feel vaguely normal again, regular levels of tiredness as opposed to completely wiped out. They often say normal is boring, but I’d love to feel normal and part of the In crowd again.

I’m a morning person so I am off out for a jog / walk – it’s the last thing I want to do, but I’m hoping the fresh air will do me some good and somehow help to replenish my energy levels. That’s if my legs can do what my brain wants them to!

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.