Another Year With Cancer

Another year seems to have gone by in a flash! Christmas 2018 is upon us and I’ve been thinking about everything that has happened over the past year.

In some ways in been a quiet year in cancer terms, I recently had my 41st cycle of Pembrolizumab and all remains calm on that front. Luckily I have a break built in over the holidays and I am not due back at Leicester Royal Infirmary until mid January. Hooray!

My scan results in early December indicated all remains stable, which is fabulous news. It doesn’t mean I’m cured of cancer, or that I’m in remission, however it shows how amazing Immunotherapy is and that things are continuing to move in the right direction. I know my fourteenth year with Melanoma will continue to challenge and surprise me, but hopefully I can turn this in to more of a positive.

In the last twelve months there have been some highs (trips of a lifetime, new family members) and some lows (feeling overwhelming sadness for the life I feel I’ve lost, getting major FOMO, feeling left out and generally feeling not good enough for others). The stability of my mental health has been hugely challenging, and there have been multiple times where I’ve felt I had control of life; only to realise that I couldn’t be further away from feeling in control and it actually feels as though my whole world has come crashing down around me. Even as recently as last week! I haven’t felt as bad as this since I was first told I had a brain tumour over eight years ago. With another year looming I’ve began to worry about the year ahead, and the challenges living with cancer might throw at me. No amount of therapy or medication will make this disappear, but it’s slowly making things a bit easier. I know that I will have to continue combating my anxiety and depression in 2019 no matter what life throws at me.

In truth, I’ll never quite get my Christmas miracle of a cure for stage 4 cancer, but I can still dream. Deep down what really matters is spending time with family and people I care about during the holidays. Last January I started a full time job alongside chemo, and it’s meant down time has been less of a feature in 2018. That crazy thing is, I did it! I held down a full time job whilst having treatment for twelves months and I am determined this will follow through into next year and beyond. Often I don’t feel as that I have many ‘successes’ so to speak, but If I had to pick something I am most proud of in the last year, that would almost certainly be it.

As ever I’m apprehensive about the next 12 months and hoping it’ll be peaceful and calm.

Wishing everyone a Merry Christmas and a very Happy New year!

Scan Results And Festive Freedom

Yesterday I received results from my last PET CT and MRI scans and I’m relieved to say that the results were good and everything continues to be stable.

After getting over the Scanxiety, I was feeling somewhat confident that the results would be stable, however the worry is never too far from my mind. Hopefully this means I can relax a little over the Christmas and New Year period.

I am fortunate enough to be having a chemo break and am not due back to see the oncology team at my hospital in Leicester for another six week. In my 2 and a half years of receiving Pembrolizumab this is a rare occurrence, and one I am especially grateful for at this time of year, fingers crossed this will be a blissful time of freedom over the festive period.

I haven’t written a blog post since The Truth About Depression three weeks ago. Part of me has been living in purgatory waiting to get my scans over and done with, and the other part has felt like I’ve not really got anything more to say. I haven’t suddenly snapped out of my downward spiral, but I am taking more steps to try and help myself.

I have now had my 41st cycle of Pembrolizumab and the fatigue seems to be hitting me more than ever. Lucky I have been working from home and resting which always helps, but powering through never feels like an option when it comes to post treatment tiredness. This is something I didn’t appreciate before I started having Pembrolizumab. A while back I wrote a post called Tired of Being Tired, which summarised my feelings on being physically and mentally exhausted. After reading it back, I feel the same as I did back then, annoyingly getting used to it doesn’t make me feel any less exhausted.

Exhaustion comes in waves, and when it hits it seems to affect my energy levels straight away. There is something about being in a hospital waiting room which makes me feel so sleepy, even with all the alarms and buzzers going off every few minutes. Having the treatment itself makes me become a total zombie, and I often struggle for a few days afterwards, making small things such as walking up the stairs or packing a bag seem like a huge struggle. I don’t trust myself to drive after chemo as my judgement certainly isn’t what it should be. I long to feel free and full of energy again, so perhaps having a treatment break over Christmas is exactly what I need.

A couple of people have asked me if I planned to celebrate my stable scans results. A few years ago I used to mark them as more of an occasion, but I honestly don’t think about them as a moment to jump up and down for joy. Nowadays I am too scared of what the future holds and I’ve been feeling particularly vulnerable over the past couple of months.

Of course I am so grateful to be in this position, even if living with cancer does take its toll, but I prefer to try and reset my mindset to one that isn’t in complete panic mode. I want to try and look forward to the next few months rather than just celebrate one moment. Hopefully I will feel less like I’m holding a poisoned chalice and perhaps as though I am holding a glass half full instead.

Fingers crossed for more good news in 2019. Until then I need to go back to sleep, rest and try to fight off a cold I think is coming my way as I’m a bit under the weather.

Festive Feelings 2.0

Christmas 2017 is a day away, and it seems like only yesterday I wrote the first Christmas blog post Festive Feelings, but 365 days have passed and a lot has happened over the past year.

On Monday I went on a Christmas trip with my Mum and Sister to Brussels, which makes a huge change from the week before Christmas last year, when had my ninth cycle of Pembrolizumab. So far I have had 25 cycles of the drug and all remains stable, which is more than I could have wished for during 2017. I am pleased to say I haven’t had any last minute hospital dashes or huge scares over the past few months. I am also very lucky that I haven’t had another major operations in 2017. Once again, hospital is the last place I would want to be over Christmas, and am really grateful to be an outpatient, particularly at this time of year.

I often start to worry about the year ahead and the challenges cancer might throw at me. The unpredictable nature of the illness has been a huge part of the anxiety I have been experiencing lately. Melanoma is never far from my mind, particularly during the festive season.

I’m grateful to be well enough this Christmas to enjoy it again, although I’ve been feeling very down over the past few months I know how lucky I am. Overall it doesn’t matter how many presents someone gets, how expensive they are, how festive the house looks or how big the Christmas tree is. There are much bigger problems in life than what films to watch on Christmas day, or what gifts to buy family and friends. What really matters is spending time with people I care about, and trying to be as happy and positive as I can moving forward.

2018 marks a big change for me, I recently got a new job which I am due start in January. I am excited to have a new focus, and for the new challenges that will come with it.

Wishing everyone a Merry Christmas and a Happy New year!

The Season Of Good News

Following a recent report from Macmillan, there have been a series of articles in the news over the past few weeks stating that there are now thousands of people in England who have the most advanced cancers, and that they now surviving for several years after their diagnosis. There has been a lot of coverage in the news, for example on the BBC and Guardian websites.

The research, revealed at the National CancerResearch Institute Conference in Liverpool is based on data from England’s national cancer registry. The data captures people who were diagnosed with one of ten different types of cancer between 2012 and 2013 and were still alive at the end of 2015. For me, this isn’t really breaking news so to speak. Two years doesn’t seem like an awful lot of time to me, but its better than nothing, and who knows what the future will hold. It is of course good news! The data shows that new and improved treatments such as immunotherapy mean some cancers can be more manageable, similarly to that of other long term chronic illnesses. Sadly, this is by no means a cure. I still have a terminal illness, and I am still dying, but at the moment the disease progression is slower than I have been predicted in the past.

At my last appointment with my oncologist in Leicester I was told that my most recent PET CT scan was stable, there are no signs of disease progression at present. I ultimately can’t change the path my life has set out on, but I am always so happy to hear those words.

I have been a cancer patient my whole adult life, and stage 4 patient for over 7 years. Last May, after my second bowel surgery to remove melanoma one of my surgeons suggested I should think about giving up work altogether, given my diagnosis. Although that person was clearly incorrect, moments like that really hit home, and are a terrible reminder of how cancer has changed my life irreversibly. It bought me back down to earth with a huge thud. Life isn’t as simple when melanoma is involved.

My friends and family often comment on how brave I am, and suggest they wouldn’t be able to do the same in my shoes. I just try my best to get on with my life, I have no other choice. There is no other way to deal with the situation, so it’s actually pretty simple, despite my life being overly complicated. I would be lying if I said it wasn’t mentally and physically exhausting to get out of bed every day and carry on like there is nothing wrong; but there is no other path I can take, no alternative route. I feel unwell and exhausted a lot of the time, more than most people realise, but I just have to get on with it.

Lately, I’ve had many more down days than I have done previously, there has been a lot of late night crying in bed. I need to keep positive, but its those moments when I am all alone and more vulnerable that I think too much. I’m not finding baths as relaxing as they give me too much thinking time! When the door is locked it feels like a gateway to my emotions opens up and everything comes flooding out. I am trying to be kinder to myself and allow a few melt downs or sad moments which I otherwise would have brushed off. it is worse to bottle everything up, but emotionally it drains me of strength and energy.

I am still the same person inside, however I am just overly emotional at the moment. I’ve cut down on a lot of social activities in the lead up to Christmas and December is upon us. I am finding sometimes it’s just too much for me, particularly with the seasons changing. It’s so dark and cold outside, I want to go home straight after work and sleep. Sometimes this can be detrimental, as it gives me more time to dwell on negative feelings.

The positive news about my PET CT scan is something good to focus on, as well as all the exciting events in the lead up to Christmas time. It might be dark and cold but T’is the season to be Jolly! Perhaps this is the season of good news.

Festive Feelings

The other Big C has reared its head again, Christmas 2016 is upon us. Over the past six years I’ve had my fair share of ‘good’ and ‘bad’ christmases, a mixture of feeling rotten or recently being released from hospital. 2016 is my second consecutive ‘good’ Christmas. My attitude is one of acceptance, right now I plan to enjoy Christmas and everything that goes with it!

On Monday I had my ninth cycle of Pembrolizumab, and my last for the year. Nine doesn’t seem like very many, but at this point I feel like I’ve had 90. I’m now used to the hospital routine and the expectation that each time I got for treatment I’ll spend my whole day in the chemotherapy suite. Despite knowing this, it doesn’t seem to get any easier as time goes on. This is the last place I want to be over Christmas, and am really grateful to be an outpatient at this time of year.

Over the past few weeks I’ve had numerous conversations with friends about plans over the festive period. I am home in a Northampton with my family for a few days and plan on eating my body weight in food, watching too much television and sleeping lots. I’m lucky to have loving family and friends around me, and am looking forward to stepping out of work mode and in to total relaxation mode.

I’m grateful to be well enough this Christmas to properly enjoy it. I might be a little fatigued from treatment, but it’ll be a million times better than some previous years. I’m also able to drive the dream machine (my lovely new car) which was my early Christmas present.

At this time of year I often start to worry about the year ahead and the challenges cancer might throw at me. 2015 started off very well, heading off to America for a holiday to visit one of my oldest friends. By May however, the game had changed completely as I underwent my second major bowel surgery. I’ve learnt there is no point in trying to plan too far ahead and second guess what might happen. Cancer is so unpredictable. I know it’s a waste of my energy to worry about things that haven’t even happened yet. In some ways ignorance is bliss. I wouldn’t say no to rewinding six years though.

In an ideal world I’d love nothing more than to be cancer free for Christmas, but sadly this isn’t a ideal world, and I know that this one wish won’t come true. I know the fight will never end, I am just hoping I’ll move onwards and upwards in 2017, and that the wonder drug Pembrolizumab will continue to keep my cancer stable.

I have a holiday booked to Rome in March and am hoping to go away around my 30th birthday in May, but don’t want or book anything too early for fear of tempting fate. I have to look to the future, even though sometimes I can’t see through the fog. I’m not willing to accept that this could be my last Christmas.

To all those who have read my blog so far, your support is incredible & It means so much, particularly the messages from those who I’ve never met. Merry Christmas!