Andy’s Story

Andy Heather and why he is helping It’s in the Bag Cancer Support

I think it fair to say that life has thrown a fair amount at me in the 50 years I’ve been on this planet……2 disabled children, cancer and then cancer again or so we thought….

Let me set the scene for you…..

At the age of 26 I got married and at the age 29 I become a father to a beautiful baby boy (born in June 1996), I took for granted that everything would go to plan. I wanted 2 or 3 children, who I could play football in the garden with, make things in the garage, go exploring in the countryside. All the sorts of things I did as a boy – the nice stuff. I didn’t relish the thought of sleep deprivation, snotty noses, tantrums but knew that for a few years – that was part of the deal. I did not imagine still having to deal with all this and cancer 20 years later. My life now contrasts entirely with what I had imagined – and in reading “my story” you will understand why I have spent the last few years initially fundraising for disabled children’s charities but more lately a great testicular cancer charity called “It’s in the Bag”.

I now have 3 children – Edward (21), Amelia (18) and Harry (17) – children that I am very proud of.

Everything seemed normal when Edward was born, a beautiful boy, blond hair and blue eyes. Yet one by one the milestones he should have met passed him by. Excuses were made. At about 12 months we were referred to a paediatrician. We were told he would probably never walk, talk or live an independent life. Overnight all our dreams for Edward unravelled. Instead of hopes for Edward we began to fear all the basic things in life for him. Living an independent life, getting dressed, walking to the shops, going to the pub – all the things you and I can do without really thinking about it.

We had Amelia, normal in every way, closely followed by Harry. The moment he was born parental intuition told us he had the same condition as Edward. We were proved right.

Edward and Harry have an undiagnosed genetic condition. Their lives are not easy. They cannot communicate in the way that you and I do. They use sign, symbol, gesture, facial expression. They are lucky that they have now got an “electronic voice” – their communication aids. They have fine and gross motor difficulties – they find co-ordinating body movements very difficult. They have complex learning needs. They are bright beautiful boys – along with my beautiful daughter, who I would move heaven and earth for to make life easier for them.

Fast forward to the current day…..

I’ve been happily married to Emma for 24 years, the children are all happy, we still have to fight to get them the help they need, but the last 12 months has been the most testing period of my life.

In May 2016, I noticed my trousers and pants started to feel a bit uncomfortable. Initially I thought I was putting on a bit of weight but it wasn’t until one evening as I laid in the bath and realised one of my testicles was quite a lot larger than the other. I wasn’t immediately alarmed but knew I needed to see my GP so promptly made an appointment. “Don’t worry too much, you’re a bit too old for testicular cancer” I was told. That thought had never even crossed my mind but I now had a nagging doubt….

Relaxed conversation isn’t easy when you’re naked from the waist down and a radiologist is smothering your testicles with jelly, but we managed it pretty well. He took me through the process, first the right one.

“Perfectly normal, good blood flow”. I nodded in approval. But when he started work on the left side, he went a bit quiet. And judging by the dark mass that had appeared on the monitor, you didn’t need 10 years of medical training to work out that this one wasn’t right. The silence seemed to be endless.

“There’s no easy way of saying this I’m afraid. You’ve got a testicular tumour and you’re going to need to have it removed fairly urgently.” “Is it cancer” I ask.  “Highly likely was the answer.” The urologist will look at the scan and make the final decision.

My visit to the urologist was one of mixed emotions. I sat in the waiting room with Emma, and sat…and waited, and waited. Finally, we were called in. The first thing I noticed was the Macmillan nurse sat next to the consultant. “Oh no, I thought. This is going to be really bad news….”

He explained she was there to offer support and talk me through what would happen. When a surgeon cuts off one of your testicles, it comes out where your groin meets your waist. The reason is to minimize the places where the cancer cells might be left behind.

The day of surgery soon arrived, in and out in a day. The surgeon arrives with his big thick marker pen before the op and duly draws three enormous arrows pointing to my left testicle. A radical orchiectomy is the process I’m to undergo. Goodbye old chap I think. It’s a strange loss that couldn’t really contemplate until about a week later when I was brave enough to take a peek at my undercarriage. It doesn’t look a lot different, just empty. I envisage what a pair of cherries would look like before a bird ate one them. Strange the things you think about…

I was desperate to know if my cancer had spread but my inability to walk after the surgery and the pain I was in made moving virtually impossible but I was damn sure I was going to make that CT scan the following day.

Now for the waiting bit which people who have had cancer will relate to; has it spread? biopsy results? how much chemotherapy? how long until I feel better?

Things you hear referenced a lot when you have testicular cancer, number one: “Just look at Lance Armstrong.”

After surgery, the biopsy results.  What I didn’t realise is that cancers are all different and there are various centres of excellence for treatment. My nearest hospital is Bristol, an hour’s drive from home. I arrive at the Bristol BHOC, glance around and see people of various shapes and sizes that appear to be at various stages in their treatment. A bloke in a bright orange polo-shirt wonders over. “Your first-time mate?” he says.  “Yes” I nervously reply. He explains he works for a charity called “It’s in the Bag”, he’s had and survived TC and is now involved in supporting men and their families at times like this. It was good to see a friendly face with words of reassurance.

I’m called into the consulting room, another consultant, friendly and plain speaking and a nurse I later learn to be Sue, one of the founding members of IITB.

The doctor advises it’s a seminoma – apparently, the best kind – and it hasn’t fully escaped the testicle. It has, however, reached a point where a blast of chemo would significantly reduce the chances of it coming back – from a 20% chance to 2%. It’s a no brainer for me. I want to do everything I can to avoid this ghastly disease ever coming back.

There’s nothing like a chemo ward to put things in perspective. Looking around, I realise that I’ve got it good. There really are people who look so terribly ill, I almost feel a fraud sitting amongst them. I’ve got one visit and I’m free, free to plan the rest of my life.

One long term side effect I hadn’t considered was my loss of energy and libido, I just couldn’t be bothered, what was wrong with me I wondered? It transpired after two or three blood tests that my testosterone levels had fallen so low that I had the level expected of an 80-year-old! I’m fortunate in that my specialist cancer nurse, Sue, had battled hard to get Testosterone Deficiency Syndrome recognised and consequently was able to prescribe testosterone replacement therapy. The downside is I have to cover my arms and shoulders in a sticky substance every day if I want to function “normally”! I’ve since learnt from other “one-balls” that they’ve had to wait years. I’m lucky to have such a great team of specialists looking after me.

In December, this year my fears were realised again. My youngest son Harry presented with the same condition as I had. Lots of visits to the hospital scans, ambiguity but ultimately the same decision, they needed to operate and remove the offending testicle. We couldn’t believe it, not again, surely lightening could strike twice. I wasn’t sure at that point that life was fair. Here we were sitting down again talking bollocks and prosthetics!

Harry was in and out very quickly. Up and about much faster than me (hours not days!) and appeared to be recovering well. We still had to wait for the biopsy though, eventually it came back…all clear…thank God. It did take me back to the early days of my treatment again. A place I didn’t want to go back to.

So here I am, just over a year later, reflecting on things. Of course, I never wanted to go through this. It’s taken its toll emotionally and been tough on those I love. Having disabled children has taught me many things but what has cancer taught me –

  1. Cancer taught me what it means to be strong. And you will never know how strong you are until it’s your only option.
  2. Cancer taught me the definition of fear. Nothing I do in my life or career or anywhere else will ever be scarier than where I’ve already been.
  3. Cancer taught me the definition of happiness. That wanting more and always striving for what’s next will never compare to what you already have. That nothing will ever make me happier than a healthy life with my wife and children.
  4. Cancer taught me that life is not a given. Every single bad day is so much better than no day at all.
  5. And most of all Cancer has taught me that life is not a rehearsal. You only get one go at it so make the most of it. Tomorrow is an excuse. Anything worth doing is worth doing today

The other great positive to come out of this is the group of people involved with the charity It’s in the Bag who have been a great support throughout. I’m now an ambassador with them, actively involved in fundraising and raising awareness of this dreadful disease and how you can check yourself