It occurred to me recently just how quickly things change when you’re living with cancer and how, for every stable period, there’s inevitably one more struggle lurking just around the corner. It’s one of many things that make life difficult.

When I started this blog, around four months ago, I remember saying that I felt as good as any time over the past two years. Fast forward to now and I’m experiencing some difficult and frustrating side-effects from my immunotherapy that are making my day-to-day life feel like hard work.

Many of you reading this will have no doubt already experienced cancer tiredness in some form. For me, this has been there most of the time since I had chemotherapy, although there are times when it’s worse than others. Resting and sleeping don’t help. In fact, I sleep too much during the day and not enough at night… although that’s more related to pain, which is all over my body now. And the fun doesn’t stop there folks. I’ve been feeling sick lately and so I don’t always feel like eating, I get an acne-type rash on my face and I’ve noticed some definite hair loss too. On the plus side, my fungal nail infection finally seems to be clearing up.

Got me on a technicality

It seems unbelievable that I was even contemplating going back to work in February (I am still employed, It’s just that I haven’t been in for two years so I’m listed as inactive – reasonable if you ask me). I had some talks with HR (Human Resources), however, the reality is that it simply doesn’t, well, work. For them, or me.

Now, I’m not saying that you can’t work if you have terminal cancer. UK law protects employees with any terminal illness from discrimination and employers are required to make reasonable adjustments to allow the person to continue working if they wish. It will very much depend on your individual circumstances, and you should consider things such as your health, current treatment, and financial situation.

Fortunately, my employer has been supportive and understanding of my situation since the start and I’m sure they would be able to accommodate the adjustments I would need (such as reduced working hours, working from home and a reduced workload). Certainly, I wouldn’t be able to work my old full-time hours, indeed, there would invariably be periods when I wouldn’t be able to work at all.

It wasn’t long ago that my cancer had spread to my pleural cavity and, as with most things with cancer (and its treatment), I found this affected me mentally, physically, and emotionally – I would also add socially here too because there are times, like now, when it can be difficult to maintain relationships. It took fours months to drain the fluid and stick the lungs to my chest wall.

Another issue I now face is that, as a result of the intense chemo regimen I had at the start (the one I should never have been on), I have stage 3 chronic kidney disease which also has its challenges and can leave me feeling tired and weak. Then there’s the swelling in my hands and feet, the dry, itchy skin. Oh, and muscle cramps too. In fact, if cancer doesn’t kill me, my kidneys will – albeit not for 20 years or so which feels like a win to me. Honestly, if you were ever in any doubt, living with cancer is hard folks.

One other thing that is true is that it can also have an impact on finances, despite assistance being available (if you haven’t already, I’d encourage you to look into what you’re entitled to). I receive Personal Independence Payments (PIP) and Employment and Support Allowance (ESA), aswell as Personal Health Insurance (PHI) from my employmee and yet, I’m worse off than when I worked full time, in part because my ESA is reduced and then taxed (because of my PHI). Okay, so I’m not exactly on the breadline but living with cancer can be surprisingly expensive (I would be even worse off if I went back to work on part-time hours).

Hindsight is a wonderdul thing, and I do wish I’d arranged life and critical illness cover when I had the chance because, like PHI, my life insurance is tied to my job – the consequence of this being that I’m unable to cash in my pension because, in doing so, I would effectively be retiring – Ergo, no life insurance for my family. That isn’t something I’m prepared to do (I would also lose my PHI too). For any of you unaware of this rule, you may be able to take your pension early on the grounds of ill health (or serious ill health you are deemed to have less than 12 months to live). Still, what’s done is done; it can’t be changed so much better to focus on the things I can control instead.

Besides, we were fortunate enough to have some savings. We were also left some money in a friend’s will; an incredible act of generosity that I’ll never forget. She died of cancer last year after being told that she had a good chance of being cured. Sadly, it wasn’t to be and her body couldn’t tolerate the treatment… Had I known what I know now, I would’ve urged her to go to Germany where you can get some of the most sophisticated and advanced cancer treatments in the world.

I was told to plan for the worst and so I lived every day like it was my last, as it very well might’ve been. Oh how we had fun. We made some wonderful family memories too. Truly, had I died on schedule, I’d have no complaints. Of course, I didn’t die, which is great, but it did mean we would have to rein in our spending, just a little because my oncologist was only prepared to give me six more months – Max, and he was so convincing that I didn’t put aside the money I’d normally save for Christmas presents (I haven’t made that mistake this year). So, those six months came and went and happily I’m now in my third year (not bad for someone who was given two or three months to live).

There are a couple of downsides of living longer though. Physically, I find it gets harder. Then there’s the fact that my money will run out – and that kinda scares me, to the point where I find thay I’m not wanting to spend it. Now, don’t get me wrong, I don’t think you need money to be happy and my life is worth a lot more to me, and my daughter. I genuinely believe some of the best things in life are free (or at least cost very little). It feels hard to explain (even if it isn’t) but there are still so many things I want to see and do before I die and being able to have these wonderful experiences helped balance the utterly devastating side of coping with a terminal illness.

Some of you reading this might think that I shouldn’t feel this way. I made a promise though to be honest, which means expressing the reality of my own life truthfully, regardless of any fear or judgment. It’s about facing up to my own thoughts and emotions and owning them because now is the time to make peace with yourself and practice self-compassion. I used to be a people-pleaser, doing what was expected of me and not what was right for me. You know what though, all this did was stop me from learning to grow on my own and I lost myself for a while.

Living well is the best revenge

Since my diagnosis I’ve been living a much more authentic life. This is one of the reasons I’ve been able to cope so well and I used my situation as an opportunity for personal growth. No doubt, the past two years have been a rollercoaster of exhilarating highs and devastating lows and the truth is that I’m scared of the money running out because then… then what. It’s the fear of the unknown that is often the hardest to cope with. The thing is though, we can’t let fear control our lives. If we do, the cancer wins no matter what and so, we have to allow ourselves to live. If I run out of money then so be it, surely it’s better than dying with regret.

There are times in life, like now, when I feel it’s necessary to pause so you can take stock of your life. That’s why I take the time to regularly reflect on my thoughts and actions. I find that I make better decisions and it even increases my sense of fulfilment… I’m not sure I could describe what living with a terminal illness is like but I can say how proud I am of myself for not giving in (it hasn’t been easy) and, if it simply isn’t possible to be upbeat all of the time, it is possible to have a wonderful life.

Yes, there are plenty of times when I feel sad or sorry for myself. Every day can be a constant battle just to stay on top, never mind stay alive, and I applaud all of you out there surviving cancer because it takes courage and compassion. If we can accept some of the more unpleasant aspects that come with living with cancer though, while also being willing to endure the difficulties and challenges, then it is possible to end what can feel like an eternal struggle.

It’s your life, and it’s now or never.