Road to recovery – the beginning

It has been a long time since my last full post (The Cancer Returns), six months to be exact. Wow, the time flies by. Since then, so much has happened that there is no way I’ll get it all down in one go. So what follows will be the beginning of the story of my road to recovery, with many bumps, diversions and potholes along the way.

 

Just a quick recap – I was diagnosed with recurrent metastatic breast cancer in July 2018 following a trip to Spain. The cancer had, completely unbeknownst to me, set up house in my lungs, liver and most of the vertebrae of my spine. People keep asking me, “did you not suspect it”? No! I had no idea. The few symptoms I was getting: pain in my abdominal area, slight shortness of breath when pushing a buggy uphill and pain in my shoulder I easily brushed off and attributed to either being slightly unfit from my last brush with the disease or muscle soreness from doing some weird and wonderful new Pilates exercise. This just shows how good I am at compartmentalisation. Most people I know who have had cancer, once given the all clear, worry every time they get any little ache or pain. I went the opposite way and got on with my life burying my emotions about the whole shitty cancer episode and pretending that it had never happened and I was perfectly fine. Well, it turns out I wasn’t.

This brings me to life lesson number 1: stop burying emotions. Compartmentalisation may work at the time but in the long term will come back to bite you on the butt.
Jen in hospital
In hospital with new haircut (thank you Lorna)

I was kept in hospital for two weeks and was finally released on the day of my second chemotherapy. I was sent home with a PleurX drain inserted into my left lung cavity to drain the fluid off of my lungs, portable oxygen tanks, a commode and a wheelchair given to me by a good friend. My legs were swollen up like tree trunks so that I could barely walk, my liver and abdomen were swollen and just to make it up the stairs at home was a challenge and required me to walk around with my oxygen tank. It was also in the middle of the hottest summer I have ever encountered in this country which did not help. Needless to say, I was not very happy and feeling pretty sorry for myself. However, despite all that I still managed to savour what turns out to be one of my happiest memories ever. Pulling up outside our house after a horrendous, two-week hospital stay, I stepped out of the car and immediately saw my son jumping up and down in the window yelling “mummy, mummy” just before being pounced upon by my whippet Jarvis, with toy in mouth. What a greeting! I will never forget that and just thinking about it makes me smile.

 

And that brings me to life lesson number two: find happiness when and where you can. Despite the utter crap that life sometimes rains down on us, if you look hard enough there is always something positive to grab hold of.

 

So at this point, I was pretty much confined to my chair and needed to be pushed in a wheelchair to get to my hospital appointments, or indeed anywhere. My lungs were full of fluid which meant that I could not lie down or it felt like I was drowning and I had to sleep propped up with pillows. I was having intravenous chemotherapy every Friday up at the hospital.

 

So now might be a good time to bring up the small matter of my prognosis and treatment plan. There is a question that, let’s face it, I know is on everybody’s mind when they find out that I have cancer that has spread (ie. stage 4 cancer). How do I know this? 1. I can see it in their eyes and 2. I think the exact same thing when I hear that somebody else has stage four cancer. And, ironically, it is the one question that nobody dares to ask. So, here it is, get ready for it…

 

How long do I have left? No, not how long do I have left before my blue badge runs out (yes, I do have a blue badge and it has made parking so much easier. Now that I am walking around again I feel slightly like a fraud using it. I actually sometimes get out of the car and pretend to limp so that I look like I need it!)

But I digress. What is my prognosis? How long do I have left? Would you believe, that I have never, in all this time, asked my oncologist and he has never volunteered the information! Oh, I can work it out … I was told that my treatment is “palliative” (ie. The cancer is fully expected to get me in the end) and that I will have chemotherapy for 18 weeks followed by hormonal treatment consisting of two drugs: one that usually keeps the cancer at bay for about six months and another that will extend the first drug for about another six months. After that, the cancer works out a way to beat the drugs. So, from that, I could work out approximately how much time the medical professionals thought I would have left  and I will leave you to do the same. Luckily I don’t often believe the medical professionals.

I always thought that if I were in this situation I would want to know what the statistics are. I figured I would be looking up the stats on the Internet. But I have not done this. When it came down to it, my first thought was that I am not a statistic. I don’t fit into any boxes and my cancer journey is different to anybody else’s. Knowing the statistics wouldn’t help me. In fact, just the opposite. I think it would box me in and I would be more likely to give up and become one of those statistics myself. So instead, I hold up my middle finger (with the greatest respect) to prognoses and statistics and say, that’s what I think of you!

So, there I was out of hospital, in a wheelchair and thinking at the time that I only had about 18 months left. For all I knew I would not get to see my little boy grow up and, in fact, he may not even remember me. I started to get things organised (life insurance, pension, important documents) and even started planning my funeral (and just so you know, I want bright colours, sunflowers and lots of ABBA music!)

Jarvis in park
Jarvis in Greenwich Park

And now, here I am six months later, just finished chemo, walking the dog for about an hour every day up and down big hills without oxygen, no lung drain, no wheelchair, able to lie flat, and feeling pretty positive about life (with occasional moments of doubt, sadness and despair). I am not healed by any stretch of the imagination and am beginning to have scan anxiety as I get the results of my latest CT scan this coming Tuesday, but, I am much, much better than I was. So how did I get from there to here? Well, it has been an interesting journey (what I call a “healing” journey… Notice I don’t say “fighting”. More on that one later) and I feel like it is only just beginning. I don’t have the energy to go into it now, and you probably are beginning to get a bit fed up with me, so I will leave that for my next post but will give you a bit of a teaser… The journey began with a couple of fateful e-mails from well-meaning friends and involves making radical changes to my diet, becoming best friends with a juicer, searching for answers to questions that I haven’t yet discovered, having colonic hydrotherapy, participating in a class full of people making the strangest wailing noises and meeting a Kuwaiti princess and three ladies called Jennifer. And much much more!

 

But for now, I am going to love you and leave you and go drink some Dino juice (thanks Charlie and Peppa Pig for naming that one). More to follow later…

 

Yours in health and smoothies,

 

Xoxo

 

Justjen