A Spring In My Step

Over the past ten days I’ve started to notice a major change since the end of my cancer treatment. After approximately six months of being free from Immunotherapy, I’ve finally started to feel less fatigued, or at least I think I have!

I recently had a couple of weeks off work, which allowed for some much needed down time; it culminated in a trip to the Isle of Wight to see one of my friends get married. It was a fantastic weekend, full of sunshine and dancing and on the evening itself I didn’t get to bed until the early hours! I couldn’t tell you the last time that happened, and I’m not sure I could’ve done that a few months ago! The day after the wedding I felt exhausted, but in a different way to after hospital treatment. I felt really tired, but it certainly felt different to the extremely fatigued, glazed over sop-you-in-your-tracks feeling that I have been so used to. It was a great realisation that perhaps the long term effects of receiving cancer treatment might be fading slightly, therefore allowing me more room to breathe. Once I’d caught up on sleep, I felt really happy I’d danced the night away.

Despite feeling as though I have more of a spring in my step, I still feel broken by everything I have been through, and I know that feeling will never go away (or at least not easily). Over the past two years I’ve seen three different counsellors, had CBT and now take regular antidepressant medication and I am not sure my mental health will ever truly recover.

No matter how hard I try, I still have days where I am completely exhausted by the whole process of just living my life. It’s hard to navigate in this new world I’ve suddenly found myself in, I’m still baffled that I haven’t been to go to the GP in the past month. It’s literally blown my mind! This must be what other people feel like?!

I still live in constant fear of disease reoccurrence and I have frequent dreams about my demise, include finding out I have another brain tumour, or being in constant abdominal pain due to another bowel tumour. Sometimes I wake up and It takes me a moment to two to realise it wasn’t real after all. I don’t want cancer to define me, but it has been such a huge part of me that I am finding it hard to separate my life with cancer and my new regime without treatment. This is what I have dreamt and hoped for, but it’s much more difficult than I ever imagined it would be. I hope that in time I can start picking up the pieces of my shattered existence and start taking small steps forward again.

I haven’t written on much on my blog recently as I’ve been trying navigate in the new world I’ve recently found myself in, and hoped a blogging break  would help me to feel less like cancer is still ruling over my life. I do think it has helped, but I also find writing is a little like therapy, and helps in a similar way to my counselling sessions. 

I have a busy month ahead as I am due to celebrate another birthday in a couple of weeks. All birthdays are milestones for me, and I am very happy to be turning the glorious age of 32. My situation has changed beyond comprehension in my 31st year. Having been diagnosed with stage 4 melanoma with metastasis in my brain and my left lung at 23, it was a shock I made it to my 25th birthday, let alone my 30th a couple of years ago. I also never thought in a million years I’d seen the younger members in my family grow up, but two are about to enter into the adult world, and we had a new addition join our family at the end of last year, which has been life changing. These are life events I never thought I would be alive to see, and when I think about it, this makes me the happiest. I know I need to keep reminding myself of how far I’ve come and try to use this to my advantage.

I hope my energy levels continue to increase and get more plentiful as time goes on. I’ve already got the date for my next PET CT scan in July, so I am hoping and praying i continue to reap the rewards Pembrolizumab has offered me so far. 

Finishing Cancer Treatment

This is a blog post I never thought I would write, I’ve been keeping some news to myself over the past 12 weeks, which is a pretty big deal. I am no longer receiving Pembrolizumab on the NHS. For now, I have finished taking the drugs and am treatment free and am adopting a ‘watch and wait’ approach.

I am no longer making the trip to Leicester Royal Infirmary every three weeks for Immunotherpy and am now on surveillance. After receiving various chemotherapy and Immunotherapy treatments over 4 and a half years I have now pressed pause on this part of my cancer journey. This means I will have regular scans to check for disease progression and wait to see what happens, and make a decision about future treatment when the cancer returns.

For me, being told my stage 4 cancer diagnosis meant I’d likely live for 18 months back in 2010, It’s difficult to know how to process where I am at right now. This remains even more difficult to explain to others, and I am sure there will be many reading this blog post who will ask how and why this has happened. Some my query the status of my health, does this mean I am cured?! Sadly not, but for now at least, it appears that my melanoma is under control and my last few scans have appeared to show little or no evidence of disease present in my body. Melanoma is hiding away for now, however, it is an aggressive cancer so I really don’t know for sure what could happen later down the line. All I am able to do for now is to attempt to live in this new world and continue my day-to-day life, in the hope it’ll be a really really long time until I have to resume treatment.

I am simply waiting, and taking things one day at a time, as only time will tell if and when my cancer will return. I have been on ‘watch and wait’ earlier in my stage 4 journey; after surgery to remove my lung tumour in January 2011 I remained disease free until May 2014. I still had the occasional subcutaneous lump crop up somewhere that was surgically remove, but for the most part was considered NED (No evidence of disease).

Pembrolizumab has been my life line over the past two and a half years and 40 odd cycles later I am going solo. For me, this is incredible news that until just before Christmas seemed like a total pipe dream. Immunotherapy is still so new, so it has been difficult to predict what the future holds with limited data on treatments, and the likely effectiveness they could continue to have in the future.

To cut a very long story short, I visited my oncologist in November last year and he informed me that it was looking likely that The National Institute for Health and Care Excellence (NICE) were planning on making some changes to how advanced melanoma is treated, specifically for patients who had been taking the drug for over two years and were currently NED. He explained that the current guidelines were set to change, which meant that if I stopped taking Pembrolizumab I could be re-challenged with the drug again if necessary in the future, therefore giving me a chance to have a break for the gruelling routine. This came as a huge shock to me, as it was the total opposite to what I had been told before. I have been living in the knowledge that I would be on the drug for the rest of my life, or until it stopped working, as I wouldn’t be able to take it again should I stop voluntarily and recurrence occur.

My oncologist told me that when the drug was first given on a trial basis eight years ago it was only given for two years, so I believe there might well be some people out there who are doing well six years post Pembrolizumab, but the data doesn’t go any future back. If so, I’d love to hear experiences of these patients. Naturally, I am sure the decision by NICE is also a cost saving measure, as it is so expensive to produce. I guess it works out cheaper for patients to re-challenge later down the line rather than be on the same drug for years on end. I am ok with this approach as long as I know I have options. When I first took Pembrolizumab in 2016 it was my only treatment option, but now there have been other drug developments in the field, meaning in the future I might not have to put all my eggs in one basket. It is petrifying, but I am hopeful there will be more positive change around the corner.

In late January, after a delay in the final decision I was told I would now be under surveillance. This was just two days before I was due back for chemo following a Christmas break. Being under surveillance makes it sounds like I am been threatened with as ASBO, or about to take an exam under timed conditions!

As my portacath is currently not in regular use it now needs to be flushed frequently. Right now I am unable to have it removed, I asked my oncologist about this and he said it should be left in for the foreseeable future and we might be able to discuss removal at some point down the line. Due to my hospital being far away from where I live this has taken longer that usual to sort out but hopefully my portacath will play ball at my scan tomorrow.

Over the last three months, the decision to stop chemotherapy has had a big impact on my mental health. This hasn’t come as a huge shock to me as I have felt as though a rug has been pulled from under my feet. All of a sudden the security that I once knew has disappeared and I am in uncharted territory. As much as I hate having treatment, I felt like I was doing my part to keep this awful illness at bay, but without it, I feel like I am going into battle without any armour. Surely I can’t just do nothing?!

I have been cautious not to mention this to many people, as the future is so unpredictable, but it’s now been 12 weeks since my last infusion and I am due my first PET CT scan tomorrow to check for any progression. This is the first time I have had a scan since early December, so I am keeping everything crossed the drugs are continuing to work after treatment has ended.

I’ve heard a couple of stories from people who have also stopped Pembrolizumab, but have done so in the knowledge they cannot be re-challenged. Apparently, it takes a few months to adjust, so unsurprisingly I haven’t felt better in myself as yet. I am waiting for some new energy levels to kick in sometime soon!

If I am honest I still can’t believe it, given all the negative things I have been told during my cancer journey it is a lot to get my head around. Despite everything, I know how lucky I am, even on days when I don’t feel good. I will never be completely rid of cancer, it will always be a huge part of my life, but for now things are ok.

I will update with my news once I’ve had my results in a few weeks.