A Wife's Perspective: Every Step Of The Way, I'm There! (My Experience of Testicular Cancer)

Member Name: Silverwillow

Product:	My Experience of Testicular Cancer
Date:	10/02/09 (93 review reads)
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When you're partner has cancer, so do you or at least that is how it feels! For every step of the way you have to be there too, every hospital appointment, every operation, every chemotherapy session, every check up. As strong as your partner has to be, you have to be stronger.

Cancer was already dark cloud over our family when my husband found a lump 'down there.' My uncle had just died after a long struggle with bowel cancer; my aunt was undergoing the latest of a number of lumpectomies and was set to start another cycle of chemotherapy. Having seen the extremes of cancer and it's treatments, he put his macho attitude aside and didn't hesitate to get a doctor's appointment booked.

He was seen the same day by his GP who advised that she couldn't tell him anything for definite: it could be a cyst, a simple blocked tube or 'something else.' He was referred to the hospital for an ultra sound. It was a two day wait until his hospital appointment and it fell on the day of my uncle's funeral. After the ultrasound, the doctors called and asked him to attend an appointment at 5pm that day. When he called to ask me if I would go with him to the hospital later that day I knew then it was bad news, for them to call him back that quickly, something had to be wrong.

Up at the hospital he went into the room himself, his show of strength. A nurse called me to join him some ten minutes later. On the screen were the results of the ultra sound and I will never forget that doctor's face as he told me to sit down. I couldn't sit down; I stood behind S and held his shoulders tight. I knew that I would have to be his eyes and ears in these appointments, take in everything that would have to happen, the changes that would have to be made. The cancer cells had spread and the doctors wanted to move fast, scheduling his operation for the week after. What shook me most was being able to see the obvious tumour on the ultra sound, being able to see the tumour and how it had infested his cells.

Some hidden inner strength kicked in during that appointment, I wanted to know everything and my business side took over as I began to understand the medical jargon that they had thrown at us. I knew that S had to fight and couldn't lie down to this disease, he couldn't let it win. From that point, even whilst in the presence of the deadly serious doctors, we started to have a giggle, winding each other up as we had done since the moment we met (much to the bemusement of the doctor). Keeping that hold on what was our 'normality' was important to me.

I'd like to mention that at the point of his diagnosis, S and I had been together just under 8 months, we were no where near the point in our relationship of discussing such things as children. The doctors were unsure of how the chemotherapy would affect the remaining healthy testicle and with them removing more than they had hoped of the other testicle and tubes, etc, they offered S the chance to freeze his sperm. We decided that the best way to proceed would be to leave every 'door' open. Everything was done so that if S was infertile he would have that back up regardless of what happened between him and I.

I read everything I could get my hands on with regards to the disease, the operations, the treatments, the survival rates and most of all side effects of the drugs being used in the chemotherapy cycles. I was going to be prepared for everything and anything, he would have to go through hell and back but I'd be there with him. We told those who needed to know and they instantly picked up on the positive, fighting attitude that I was trying to establish.

I spent every moment I could by his side. We made the trips to Edinburgh for the chemotherapy more like short holiday breaks, packing any form of activity that could be done at his bedside such as puzzles and games, deciding on the plans for the wedding (S proposed two weeks before starting his chemotherapy) and trying to have as much fun as is possible in a cancer ward. I cannot thank the nurses on that ward enough for their happy, positive attitudes and being so flexible as to allow me to stay every minute with him.

The chemotherapy did have its side effects, S was tired, his immune system was destroyed, the anti sickness pills played havoc with his insides and his appetite was non-existent. His bedside cabinet became a pharmacy, the pills the doctors had given him as well as a large supply of recommended medicines that they suggest we buy. The food cupboards were full of weak-scented meals and I spent a day each week cooking to make sure that there were fast and healthy meals in the freezer ready for him. He had to eat as soon as he felt hungry but strong smells would put him off very quickly. I think we kept Jaffa Cakes in business as these seemed to cover the metallic taste that the drugs had caused.

The routine of entering the house was the same as entering a hospital ward, no visitors if they had been exposed to bugs or viruses, use the anti-bacterial gel on your hands before going near him and leave your shoes at the door. S did contract Septicaemia, but that's another completely different topic. Thankfully he fought hard and the doctors were keen to keep his chemotherapy on track to prevent delays. The end was in sight.

I have no doubt that the cancer caused more emotional damage than physical, the months during and following the chemotherapy he was very insecure about his body and other people's perception of him. The doctors had warned that depression is easily to slip into after the chemotherapy ends as although the 'all clear' is five years away, there seems nothing to fight anymore it is just a long case of waiting to see what happens next. He did slip but we did everything we could to pull him out of his slump and keep him going, and thankfully after changing his job and refocusing he was as close to his normal self as he was going to be.

The advice I'd pass on to anyone else that has a partner who has been diagnosed with testicular cancer:

- Become their eyes and ears from the start. They will not be able to take in everything that the doctor advises at the appointments, it will be over the next few days that the questions they would have wanted to ask will come to them. It makes it easier if you have pre-empted this and have their answers.

- Research anything you don't understand. A lot of terms that the doctors use are terrifying but a little understanding can make them much easier to deal with. It is also easier to keep your partner calm and positive if you can push the doctors to use 'lament terms' or explain the jargon they have used.

- Buy a digital thermometer! It saved S's life. During chemotherapy if your temperature rises above 37.5 then you have to get to a hospital ASAP. Should this happen, tell A&E IMMEDIATELY that the person is undergoing chemotherapy as they should be moved to a private room away from possible infectious patients. Make sure that doctors/nurses use the hand gels once they are in the room as door handles are disgusting. You'd be surprised at the number of people that don't realise this even doctors.

- Keep all of the paperwork and letters from the hospital together in a pack, take it to every appointment and to the hospital if required. You'll be surprised at how much time this saves the doctors, as they do not have to rely on information from other wards/hospitals filtering in.

- Accept help! You're going to need someone to talk to as well as your man. CancerBacup is a great service if you need information or just a nurse to talk to about what is going on. You will have negative down days and whilst it's ok to let your partner know you are scared or a little stressed, it's best to have someone close that you can blow off all your emotions to without worrying about their reaction.

- Be prepared and aware of the chemotherapy side effects. Soups are a great food to have in the house as they can be prepared quickly, he will have to eat when he is hungry and before he loses the notion to. Keep lots of snacks and encourage him to let you know what is affected by the metallic taste so that you know what to have available e.g. maybe chocolate is fine, but crisps are not. Mouthwashes, constipation relief tablets and antiseptic gels are a must on the shopping list.

- Talk about everything with your partner! They will be offered prosthetics, different treatments, counselling and they will probably want to know your opinion on it all.

I wouldn't wish anyone to have to go through cancer or indeed for anyone to have to watch someone they love go through it. But if there is someone out there that is in the position I was, I hope the above helps a little. It's daunting to be thrown out there in the midst of it and although there is help out there it's not the same as hearing it from those that have been through from the same perspective.

To every guy that reads this - I cannot stress how important it is to check yourself for lumps. Rather you go to the doctors, suffer a little embarrassment and find out it is nothing than let a cancer spread. You don't want to hear those "if you had come to us sooner..."

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