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 –
- Cancer taught me what it means to be strong. And you will never know how strong you are until it’s your only option.
- 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.
- 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.
- Cancer taught me that life is not a given. Every single bad day is so much better than no day at all.
- 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
When I was diagnosed with Testicular Cancer, I was a little shocked and lost. I didn’t know where to turn to get some information and support. The medical staff gave me all the information about courses of treatment and what could happen and would happen, and by the end of it my head was spinning so I didn’t know which way was up. It’s in the Bag put me in touch with men who had been through all the treatment and come out the other side. This was so important as it showed me that there was light at the end of the tunnel.
It’s in the Bag also supported my wife and family through my cancer journey. When you get diagnosed you become very self-centred as everything is focused on you, and you forget how much it impacts on those close to you. My wife was fortunate to go on a day organised by It’s in the Bag, where she got the chance to talk to other wives, girlfriends and mothers who were in the same boat she was. This allowed her to build a network of support with people who could relate to what she was going through.
It’s in the Bag helped me rebuild myself after my treatment, as going through the journey robbed me of a lot of who I was. I lost confidence, gained weight, and it felt like I forgot who I was before cancer. Through the support of It’s in the Bag, I have been slowly finding myself, rebuilding who I was, with improvements, and making me a better person. The It’s in the Banter events played a huge part in that, making me feel like a “normal” man, doing normal things with people who can appreciate how you are feeling, and also understand what you have been thorough. I made some really good friends and became part of a club because we share a common thing – we survived cancer.
Without It’s in the Bag, I would still be cancer free, but I would not be the person I am now. I feel I would still be broken. It’s in the Bag’s support has been invaluable in making me, me again.
I was diagnosed with testicular cancer on the 11th October 2012 when I was age 19. My twentieth birthday fell on one of the days I was having chemotherapy.
By the time I noticed something was wrong, my right testicle was rock solid. It was also the size of a small satsuma according to the surgeon! It was very big compared to my left one.
Embarrassed to get help
I put off going to the doctor for around 2 to 3 weeks. I thought it may just be something that would go away in a few weeks, which obviously didn’t happen. And I felt very embarrassed about going and talking to my doctor, and it was hard for me to tell my parents about it.
Because I was scared to tell mum and dad about my problem, they only found out I was ill when the consultant rang them up after I went to see him on my own. I was alone when he told me I had cancer.
It really wasn’t nice going on my own, and that’s why it’s very important to me to say to other men, don’t be scared to talk about it. I don’t want anyone else to go through what I did.
Bolt from the blue
When I first went to see my GP, he thought my testicle was just swollen and said I should be sent for an ultrasound just to check it out. The ultrasound results came back to be clear – they said no cancer. However, three weeks later the specialist I got sent to told me that yes, it was a cancerous tumour.
I was shocked, as I’d been told I was coming in for a routine blood test. But when I was told I had cancer my heart stopped and my life flashed in front of me. But I knew that I could beat it, and I did. It took four cycles of BEP chemotherapy over four months and two operations.
Don’t go through what I did – Check your balls!
When I first noticed the change in my testicle, I had no idea it could be cancer. I’d never really been aware of testicular cancer before being told I had it. So now I’m determined to spread the word.
I think my story could have been a whole lot different if I’d been aware of how to check my balls. If I’d checked my balls more, I might not have ended up having all those cycles of chemo. Early detection of lumps is key, because in the early stages it might only take a small operation to remove the testicle and to stop the cancer from spreading.
Remember: a five-minute check once a month could make the difference between the cancer spreading and it not spreading. I can’t stress enough how important it is not to be embarrassed if you find something strange. Tell your GP as soon as possible, and get support from the people you trust.
Finding strength mentally
In the moment I was told I had cancer I did think to myself, “I could die”. But once I’d got over the initial shock I knew that I would beat it. That’s what I said to my friends and family, right from day one. I told them not to dwell on what had happened. I just had the thought that I’d beat the cancer set in my head the whole time I was being treated. I kept repeating it to myself. I was determined not to let cancer stop my everyday, normal life.
Coping during treatment
I had to have four cycles of BEP chemo over three months, and two operations. The first op was an orchidectomy, which completely removed the ball with the cancer. The second was a major operation following chemo to take away the affected lymph glands.
When they removed my ball, they replaced it with a fake one. It doesn’t bother me really. It looks like I have two balls, and everything works normally as before – it’s just that one is fake and one is real. The prosthetic feels a bit different, but unless I tell someone it’s not real, they wouldn’t know!
Other physical changes came with the chemo. I lost all my head and leg hair, and some of my eyebrows. I was gaining loads of weight due to all the medication and fluid I was having. But psychologically, I managed to stay strong. Although I had to reduce my hours and take some time off to recover from treatment, I carried on working like a normal person, and seeing my friends and family as if nothing had happened. This helped me a lot, as it stopped me thinking about the fact I had cancer.
My friends and family were the most supportive people during my treatment. But the nurses at the Bristol Haematology and Oncology Centre where I was treated were absolutely brilliant too. Whenever I needed to talk to someone they were there for me. Before my treatment started I was told exactly what would happen and how it would all work, and I was updated at every stage. I was very happy always knowing what to expect.
I was introduced to It’s in the Bag by Germ Cell Nurse Sue Brand, and I knew I wanted to be part of it straight away. If you get the chance to be involved, I’d say go for it! What they offer patients and survivors is amazing. I’ve met some brilliant people through their activities. Meeting other people who have had testicular cancer helps a lot, as you can talk to any of them in confidence, knowing that both of you understand what you’ve been through.
Life after treatment
I’m now clear of cancer. The chemotherapy and operations were all a success. I’m in remission for 5 years, which means I have to undergo monthly blood tests and scans, to make sure there are still no signs of cancer in my body.
To be honest, adapting to life after treatment has been very hard. My mind was set on finishing treatment and I assumed I’d go back to work straight away, but it wasn’t like that and I’ve found it really difficult to adjust to. It’s going to take a lot of time to recover, so I am now aware that I have to take it easy and set myself realistic goals to achieve slowly.
Having had cancer, I now realise how lucky I am to have come through it and beaten it. I’ve had a second chance, and I’m going to take full advantage of it.
People tend to think of having cancer only as a very negative thing, but there are some positives I can take from my experience. I’ve met some amazing people – the nurses, doctors and other patients. Now that I’ve had it, I can be there for other people who get told they have it too. I can really help other men by making them aware of testicular cancer.
My advice to you
My advice to anyone who gets told they have cancer is to grab it with both hands. Stand up to it and say I will beat it and I will get through this. If you sit and dwell on it, I believe it will get the better of you.
Being open about it like I am is key too. Having cancer in your testicles is nothing to be embarrassed about.
For people going through treatment, I say keep a strong attitude and don’t let it play on your mind. Take each day as it comes. And for the people who’ve just finished treatment, I’d advise them to take it slowly. Don’t rush back into normal, everyday life as your strength won’t come back overnight. Set yourself goals and targets. But don’t let it stop you from doing the social things you enjoy the most.
No ordinary shower
I first discovered I had a problem with my balls at the age of 35, after I had finished a night shift and was having a shower. I checked myself as I have done ever since I played sport at a high level, and found three bumps shaped like crests of a wave on one of my testicles.
I was told about the importance of checking myself by a coach at one of the sports clubs I used to play at. I’m very sporty, you see. I used to play cricket for my county, and I’ve played football for Warminster Town and a few other local teams.
I believe my awareness of testicular cancer helped me to get a diagnosis relatively early. If I’d never checked myself, I may not have noticed until very late on, and – who knows – the outcome could have been very different.
Luckily, it only took me a day to get an appointment to see my doctor. I was scared at the thought that it might be cancer, but I didn’t put off going, as I know how important it is to have the problem checked out ASAP in all cases. Embarrassment wasn’t an factor for me, as I knew that without my health I might not get the chance to see my kids grow up – and I wasn’t going to let that happen if I could help it.
Scans, specialists and surgery
After seeing my doctor, I had to wait five weeks to get an ultrasound scan at Bath hospital. Then, a week later, I saw a specialist who diagnosed testicular cancer without a biopsy – this was in December 2011. He arranged for me to have an operation to remove the testicle. The date of the op was 25th January – my Mum’s birthday.
The operation was followed up with a course of BEP chemo. Once I finished this I was told to take things easy, and that I would need to come back for a CT scan between 4 and 6 weeks later. I had the scan, and unfortunately the results showed I still had a tumor. It took a major operation to get rid of it, which I had in September 2012.
The operation was a success, and I’m happy to say I’m now in remission.
A word to the wise
Even though I thought I’d caught my cancer early, I have actually been through a lot. So what I’d say to other men is this: if you have time to shower, you have time to check yourself. It only take a few seconds to do it, and if you do it regularly it could stop you from having to go through as much as I did.
My advice to you is to check yourself as often as you can. And if you do find something out of the ordinary, go and see your doctor ASAP! It may not even be cancer, so try not to worry too much. Don’t forget that if it is cancer, the recovery rate for testicular cancer is very high.
I was diagnosed with non-seminoma testicular cancer back in December 2011. I’d discovered three bumps on one of my balls while checking myself in the shower, which I’d been in the habit of doing for years. Because I was aware of testicular cancer, I knew how important it was not to wait around, so I saw my GP the next day. A specialist at Bath Hospital diagnosed testicular cancer five weeks later, without me even having a biopsy.
Staying on track
When I first got my diagnosis I was shocked. I basically thought my whole world had ended. I focused on the worst case scenario, got really upset, and also very angry. Looking around me at all the people who were still healthy, I couldn’t help thinking, “why me?”
Once treatment had started, I tried hard to stay positive. I didn’t feel different in myself, I just knew I had to get through the treatment to hopefully clear all of the cancer. There were many days when I could have just said, “sod it, I give up!” but the thought of not seeing my kids grow up was more than enough to keep me on track.
Having cancer is stressful, but I was able to cope by speaking to friends and family. After I was diagnosed, a couple of my friends came forward and told me that they’d had testicular cancer too. They’d never mentioned it before. I guess it’s not something people generally talk about unless they know someone who’s about to go through the same thing. One of the reasons I’m speaking out about it now is that I want to make more men aware, so that they get into the habit of checking themselves regularly. That way they’ll hopefully catch it quicker than me, and won’t have to go through what I have.
The chemotherapy I had (which was BEP 500) affected me quite a bit. I’m very sporty – I used to be a semi-pro footballer and a county athlete – and I went from being really fit to not being able to walk for longer than 30 minutes before getting out of breath. I found this very frustrating at first, but eventually just accepted it as a side effect of my chemo. I learned to cope by walking slower, and stopping when I needed to have a rest. Besides this, the chemo also made me lose my hair and my sense of taste. My attention span got very short too.
My friends and family were great when I was going through all this. I found rocks in people I didn’t think would be there for me. My friends would say to me that it was good to see me out and about, and that I was looking good. At first some friends and family didn’t know what to say, so I just said treat me like normal, and I didn’t mind if they starred at me. I did look different! Apart from losing my hair, I put weight on around my face. The steroids I was taking meant that I couldn’t stop eating.
Treatment: Round two
The treatment I received at Bristol Haematology and Oncology Centre was second to none. The staff were amazing – always happy to help or have a chat. After my initial course of treatment I was told to take things easy and that I’d need to come back for a CT scan between four and six weeks later. I had my scan, and the results showed I still had a tumour. I needed a major operation to remove this, which I had in September 2012.
Thankfully the operation did the job. When I was told my treatment had been successful, I was over the moon! I felt as if a big weight had just been lifted off my shoulders. The family and I celebrated with a nice bottle of champagne and a few drinks!
Help from It’s in the Bag
I got support from It’s in the Bag during my treatment by having travel grants. This was a godsend, as it used to take at least a hour and 10 minutes to get to the hospital by car. Unfortunately, the chemotherapy affected my work life really badly, and I was unable to work for a whole year from January 2012 to January 2013. So money was a bit tight at that time.
I used to drive myself to the hospital for my three-day chemotherapy course, and my partner would come with my little boy and drive back with him after I’d got settled in. It’s in the Bag’s travel fund covered the cost of my petrol.
Working back up to normal
When I did go back to work, I was on reduced hours and light duties for about two months. I was able to build back up to full strength by increasing my hours bit by bit through the core hours of the day. By the time a few weeks had passed, I was back on full hours, doing my job as normal.
A new chapter
Cancer has changed my way of life and priorities. I now make more time for my friends and family – the people who are really important in my life. I also go for the things I want more, and don’t put them off until the next day.
Since finishing treatment I’ve got back to a high level of fitness. One of my main achievements in my life after cancer has been getting back to marathon running. I wanted to give something back after all the help and support I’ve had, so I ran the Bath Half in aid of Macmillan, and the Bratton Hilly Run in aid of It’s in the Bag. On top of that, I’ve got my local pub involved in raising awareness for It’s in the Bag. They now sell It’s in the Bag branded merchandise, including t-shirts, key rings and beer glasses!
Not all cancer sufferers have the same support network of family and friends as I do – people who can be there for them. So if I can help some of them cope better with cancer, and understand the effect it has on their family and friends, then I’ll feel I’ve made a difference.
What you should know
My advice to anybody who has just been diagnosed or is going through treatment is to keep positive throughout the process. Speak to your key worker, family and friends as much as you can to help relieve the pressure of dealing with cancer. You will probably make close friends with other patients, and find it a lot easier to talk to them, as they understand what you are going through. Always try to tell your family and friends, key worker or your ‘rock’ how you are feeling, because they’re there to help you cope.
Follow Lee’s lead by checking your balls once a month as part of your routine in the shower.
Life lessons from football
I played all sorts of sports when I was at school, but when I left I settled on playing football. Lots of it.
I’m old now, so I can’t play any more. But I still remember one of the physios at a club I played at telling us all about “checking yourself out”. I was probably 21 or 22 when I learnt that this was a good thing to do. From then on it became something that I did every now and then, even in my 50s. Told you I was old!
Finding a lump
At age 56 I found a lump during one of my checks, and went straight to see the GP. I then got sent for ultrasound.
It’s difficult to say that I wouldn’t have found the lump if I hadn’t been checking, but I probably wouldn’t have found it so quick. And if it hadn’t been for that physio’s talk I may not have gone to my GP straight away. If I hadn’t known to deal with it, I think it would have been a bigger lump and a bigger problem by the time I got my diagnosis, and possibly much more serious.
A shock result at ultrasound
Waiting for the ultrasound appointment wasn’t great, but it wasn’t bad either. I thought everything would be fine. After all, testicular cancer is a young man’s illness, isn’t it?
I had an early appointment on a Friday morning, so I took the day off work and went with my wife Laura to the hospital. Even in the room with the gel on my balls, I thought it would all be fine. But it wasn’t. One ball OK, the other not.
The radiographer asked me to wait while she spoke to her senior colleague… Well, to cut a long story short, he wanted to see me straight away. I had a bit of a panic then, and I still had to tell Laura, who was sitting in the BRI (Bristol Royal Infirmary) waiting area.
Anyway, I went to see this chap on the top floor of the BRI. He said, “it doesn’t look good”, and he’d already talked to the surgeon. A bit shocking really. It was all in a flash.
The surgeon came to see me and said it had to come out – no messing about, no sensitive discussion, just, “I’ve seen lots of these and it’s cancer, and I’ll take it out”.
The good news was that he said he could add me to his list on the Monday!
And he did, and now I’m a bit lighter on my left-hand side.
My message to you
I’m back at work now after a successful session of chemo. I’ve been very open with my employer and everyone I work with from day one and with all my family and friends too. They all know that men must check themselves often (but not on the bus or at the office!)
My message to you is this: Just take a minute to have a feel, because it could save your life – and why wouldn’t you want to save your life?
I was 56 when I was diagnosed with testicular cancer, which makes me a bit more ‘mature’ than your average patient. I’d been ‘checking myself out’ every now and then since my early twenties, and then out of the blue, three decades on, I actually found something.
Although I was fully aware that lumps down there could mean cancer, because of my age I thought I’d be out of the danger zone. On the day of my ultrasound appointment I even put my walking boots in the car, expecting to take a hike into the countryside with my wife Laura after we finished up at the hospital. (You can read more about the events leading up to my diagnosis <a href=”http://itsinthebag.org.uk/ball-checking/real-life-stories/nigels-story/”>here</a>.)
It wasn’t to be. Everything happened in a flash. One minute I was lying there with the gel on my balls, the next I was being told I had stage 1A seminoma cancer. Three days after that, the problem ball came out.
<h4>Tactics for tackling cancer</h4>
Having the 2012 Olympics to watch helped take my mind off the situation, as did friends’ phone calls and emails. The really good ones came to visit, and some of them don’t live anywhere near.
I did short walks, especially after chemo, to the point of being told off (kindly) by my consultant for doing too much. Well, being an old sportsman, I took that as a challenge! I would also ask Laura to pick a page in one of Jamie Oliver’s cookbooks, and then I’d walk to the shops, get the ingredients and have a rest before walking back and cooking the evening meal. Some were even edible!
I read the It’s in the Bag website and others the hospital recommended, mainly to understand that testicular cancer is highly curable. I also kept a folder of information, and a chart to stop me getting confused over all the different drugs I had to take with the chemo.
Laura came to every treatment with me, and that helped both of us.
<h4>Coping with chemo</h4>
I had just one session of chemo, and it was mainly OK, but it left me tired. It’s not really surprising, but my testosterone dropped like a stone and didn’t come back up. So I’m having jabs to sort that out. It’s fantastic! It means I can get back to hiking a few miles.
Ever since my very first visit to Bristol Haematology and Oncology Centre, I’ve found the staff to be sensitive, approachable, helpful and honest. Germ Cell Clinical Nurse Sue Brand deserves a special mention for her excellent care of everyone. I got as much time as I needed to absorb everything, and Laura did too.
<h4>How It’s in the Bag makes a difference</h4>
It’s in the Bag is well worth checking out. It’s run by men who have had testicular cancer, and some fine supporting people. There are loads of activities – join in as many or as few as you like. Talk about cancer or don’t, it’s up to you. I’ve been to a few events and it’s great. A new bit of life for me and Laura.
<h4>Words of wisdom</h4>
To anyone going through treatment now, I’d say don’t try to be the tough guy. We’re all different in the way we can deal with things. I got very emotional – not really about the cancer, but about the worry to my family and friends. It’s normal. And recognising it’s normal is a good thing.
Some of your friends will need help to understand how to react. Be patient with them. Often they just don’t know what to say or do, and so they don’t do anything. And that isn’t good, as you need them. Banter is such a good friend.
You’ll know your own body, and what you could do before, and there isn’t any reason why you shouldn’t get back to that. But if your energy levels don’t return to normal weeks after treatment, tell the oncology team straight away. Don’t think it isn’t important – it is, and they will do all they can to help.
I’ve let my mates take the piss out of me for only having one ball, and I do take the piss out of myself as well. Returning my humour to (almost) normal has been a big achievement in my life since treatment. In my wife’s words, I’ve got back to be being half full, rather than half empty.
Follow Nigel’s example, and do something quick, simple but powerful for your health.
Testicular cancer – but not as you know it
Among the guys from It’s in the Bag, I’m known as ‘The Anomaly’. That’s because in April 2008, I was diagnosed with ‘mediastinal seminoma’ – basically testicular cancer in your chest!
Having testicular cancer where the primary tumour is located outside the testicles is exceedingly rare. But it is possible, and it happened to me. Each year, there‘s only an average of one case diagnosed in the whole of the South-West peninsular. So you could say that I was the 2008 case.
My mystery illness
For me, discovering I had cancer wasn’t as straightforward as finding a lump and getting it checked out. It took five visits to my GP over a period of two or three months to get referred to an Ear, Nose and Throat specialist, who immediately sent me to Southmead Hospital for a CT scan. I thought I had nasal polyps! My breathing was a bit wheezy, I had what I thought was sinus pain and my neck had begun to swell. But the CT scan showed that I had a tumour in my chest cavity, near to my heart.
The darkest days
I’d never been seriously ill in my life before, and to be told that I had a life-threatening disease was like a sledgehammer blow. I was completely shocked. We were in a small consultation room when the specialist broke the news, and I remember looking around as he was talking to me, thinking he must be talking about, and to, someone else. The shock turned into a sort of numbness.
At the time, I didn’t know it was testicular cancer. The week it took between being told I had a malignant tumour in my chest and confirmation that it was actually testicular cancer was the worst time of my life. I felt broken, very lonely and very scared.
Chemo packs a punch
Things improved once I’d got my diagnosis. As soon as I knew that there was a good chance of a complete recovery I was OK, especially as after the first session of chemotherapy I immediately felt so much better.
I had to have four courses of chemotherapy in total. Each course lasted five days, making twenty days of chemo in all (that’s a lot!) Treatment would start at about 3pm in the afternoon and often didn’t finish until around midnight. The chemo itself wasn’t so bad. I didn’t have too many side effects besides fluid retention (which made me look like the Michelin Man at times!) The worst thing was having to be an inpatient and stay at the Oncology Centre over the weekends – it got very boring at times as I was often in on my own!
The chemo has a cumulative effect on you, which takes its toll over time. It wipes you out, and you have to take a lot of time to recover – resting and sleeping a lot in between cycles.
I found I was able to deal with the stress of having cancer, mainly because I had loving family and friends around me who were very supportive.
All the messages and cards of support I got were overwhelming, and made me very emotional at times. You find out about your true friends in such a situation. Several people travelled a long way to see me more than once, and I was very appreciative. Visitors helped to break the monotony of the chemo.
Also, the staff at Bristol Haematology and Oncology Centre were all brilliant. We’re lucky here in Bristol to have such a caring and professional team on hand. To be honest, when I was first diagnosed I wasn’t too sure what to expect, and because I was such an anomaly there was nobody around with the same type of tumour as me who I could ask. But I couldn’t have asked for better treatment. I owe the Oncology team so much – my life in fact!
A great result
Because I didn’t have an initial operation, there was always a chance that the chemo might not have removed the entire tumour. As it happened, my small ‘residual mass’ (what was left after chemo finished) turned out to be only scar tissue. Finding this out was a huge relief! From then on I just had to go for regular checkups – first of all every three months, then every six months, and now it’s every year. Bit like having an MOT.
The first few times I went back to the Oncology Centre for follow up I got very anxious, as it reminded me of when I was first diagnosed. But now its OK and I know the routine – chest x-ray, blood test, quick chat and out!
My way of saying thanks
I’m one of the original group of ex-patients and staff who formed It’s in the Bag in 2009, and I’m currently its chairman. It’s an honour to be associated with the fund, and helping to turn a group of volunteers into a proper working organisation has been one of my main achievements in my life since treatment. I got involved because I wanted to help other men who were facing the same journey, and it’s also my way of saying ‘thank you’ by giving something back.
All about the positives
I won’t pretend that being a cancer patient was a bundle of laughs, but I can definitely say that the experience has changed my life – and in very positive ways. I now try and live much more for the moment and worry less about the future.
Before having cancer I worked all over the UK and in Europe, and I was away from home a lot of the time. But once I’d gone through all that chemo and got better, I realised I didn’t want to do it any more. So I started my own PC repair business here in Bristol. I love it and wish I had changed career path years ago!
I’ve also made a bunch of very good friends from the IITB group, who I would never have met if I hadn’t had testicular cancer.
If you’re about to start treatment, or currently going through treatment for testicular cancer, then try not to worry. You are in very safe hands. Having testicular cancer is not the end of the world. Far from it. The survival rate is very good. I’ve been there, and mine was a complicated case. But I’m here to tell my story like so many others, and that should reassure you.