So what’s happened since then, how many do you go back every 6 months for a check-up?

Arthur Frank replies’ It was every, it was every 3 months and then every 6 months and then once a year and when that ended in, 5 years ago, in 1996 or 1997, it wouldve been 1997, 4 years ago, it was very liberating, it was wonderfully liberating, because going back for those follow-up exams had really ceased to be reassuring, they were instead putting me back in a cancer mode. And they led to, in one case you know a very invasive surgical procedure that couldve been quite nasty; due to the skill of the surgeon it wasn’t, but it couldve been er that I just didn’t need, you know.

So when they were looking at the nodes it was possible you didn’t

need that at all?

Arthur Frank replies’ Well no I mean they never would have known that I had Sarcoidosis if they hadn’t been investigating me for cancer and if I didn’t have a history of cancer and I happened to have a chest x-ray and they’d found this they wouldve probably expected Sarcoid, they certainly wouldn’t have, it wouldve been far too aggressive to have biopsied a normal person because it’s a very risky biopsy, you’re going by all these major arteries in the chest and serious things can happen. So you know even if they’d happened to do a chest x-ray for some reason at that time they wouldve taken much more of a wait and see attitude. So, so for me now if I had had a recurrence of cancer of course I wouldve been very grateful to have had that picked up as quickly as possible and move as quickly as possible into treatment er but I think one thing that patients need to be clear on with their cancer centres is, What was the last recurrence you’ve ever had. And in my cancer centre the last recurrence was about 5 years after treatment, which means that the second 5 years of follow-up exams weren’t really in my best interest as a patient, I was really serving research at that point.

Arthur Frank’ You know my wife was unqualified in her support and she was always there. I think the thing that really is perhaps more worth talking about is the longer-term effect on a relationship.

‘the problem is really after cancer, not during cancer. It’s really putting together a kind of equal sharing relationship after this period when one spouse or partner has been so completely dependent on the other. Cancer is highly corrosive to relationships and you know our relationship will never be the same.

But cancer does, it does have this long-term effect and I think, I think it’s important for couples to realise that they’re going to have to do very significant ongoing re-negotiation of relationships afterwards.

Getting back to relationships I think that the real problem for my wife and me was dealing with these threats of recurrence. Because people just burn out on cancer, I mean I was burnt out with it, my wife was as burnt out with it and by the time I had this serious fear of recurrence, the most serious one, they were all serious but the most serious one we had a little daughter, we had an 11 month old daughter. My wife had had a very difficult pregnancy, she was still not back to you know her usual physical shape, we had this wonderful active baby to take care of, which was exhausting for any new parents, and we just really couldn’t handle this you know it was just, it just pushed us over the edge that we might have to go back into a world of cancer again. And I think that was really where our problem was and fortunately we didn’t have to go back into a world of cancer and we just you know we picked up again and went on. But I guess the message that’s important about all this is as I said it’s often when cancer is resolved medically, when you’re in remission that I think the real relationship issues begin, and that the people may need psycho-social counselling, whatever help.

Arthur Frank’ I think the really important message is that you’re entering this tunnel where very often you really can’t see the light at the end of the tunnel, when you’re in it, and it’s important to talk to people who’ve survived it.

I mean I think the thing I was trying to think of before that’s important is we did go, we didn’t have any fertility problems at all, and we conceived this perfectly lovely daughter. And I think the thing I’d really like to end on would be the birth of our daughter because theres something about that affirmation of life that’s just so extraordinary after you’ve nearly died, that that was, it made that experience so incredibly richer than it ever could have been.

But I’ve been very lucky, so if you’re lucky enough to be as lucky as I’ve been, as aggressive as the treatment has been, as terrible as the whole idea of a testicle on your tumour (laughs) a tumour on your testicle can be, and to say, it’s important to hold onto the fact that this will years later seem like a fairly short period of time.

Arthur Frank’ You know my wife was unqualified in her support and she was always there. I think the thing that really is perhaps more worth talking about is the longer-term effect on a relationship.

‘the problem is really after cancer, not during cancer. It’s really putting together a kind of equal sharing relationship after this period when one spouse or partner has been so completely dependent on the other. Cancer is highly corrosive to relationships and you know our relationship will never be the same.

But cancer does, it does have this long-term effect and I think, I think it’s important for couples to realise that they’re going to have to do very significant ongoing re-negotiation of relationships afterwards.

Getting back to relationships I think that the real problem for my wife and me was dealing with these threats of recurrence. Because people just burn out on cancer, I mean I was burnt out with it, my wife was as burnt out with it and by the time I had this serious fear of recurrence, the most serious one, they were all serious but the most serious one we had a little daughter, we had an 11 month old daughter. My wife had had a very difficult pregnancy, she was still not back to you know her usual physical shape, we had this wonderful active baby to take care of, which was exhausting for any new parents, and we just really couldn’t handle this you know it was just, it just pushed us over the edge that we might have to go back into a world of cancer again. And I think that was really where our problem was and fortunately we didn’t have to go back into a world of cancer and we just you know we picked up again and went on. But I guess the message that’s important about all this is as I said it’s often when cancer is resolved medically, when you’re in remission that I think the real relationship issues begin, and that the people may need psycho-social counselling, whatever help.

Arthur Frank said Losing hair is weird and in some ways losing hair was almost more powerful than losing the testicle, even though I took it by then that losing hair was temporary. I had an interesting experience at the end of chemotherapy about hair, I still didn’t have any hair but I was through chemotherapy and the chemotherapy had apparently been quite successful.

And I remember being, visiting my older daughter and as soon as chemotherapy was over I didn’t feel any need to wear hats or anything and some people were kind of, this child I think was asking his mother you know why this guy was virtually bald er and I remember thinking actually I didn’t care. To me the problem with hair loss was that it marked me as someone who had cancer and as soon as it no longer was associated with cancer for a man at least it wasn’t that much of a problem.

Today it would be even less of a problem because it’s stylish to have your head shaved anyway and, and again though theres a big difference between shaving your head because it’s stylish and knowing your head is shaved because you’ve lost your hair, because you’re a cancer patient. And it’s that visible marker of having cancer that I think is the really difficult thing about hair loss. Plus all of a sudden having these great amounts of your hair fall out is just, it’s a horrible thing. I mean theres no getting around it, this is one of the traumatic moments of illness er but as I say fortunately now there are a lot of models who have been stylishly head-shaved and I hope it wouldn’t be as much problem for men now as it was for me back in the mid 80s before shaved heads had that kind of niche in fashion.

Did you ever pursue any complementary therapies?

Arthur Frank replies’ I was all set to if orthodox medicine had ever failed to deliver what it said it was going to achieve at the time it was going to achieve it. I was certainly interested in other things. I think the real value, I mean testicular cancer treatment is just so successful in mainstream medicine that really I think someone would be crazy not to pursue mainstream treatment. Where I think complementary alternatives treatments can be very useful is controlling side effects and minimising the damage of chemotherapy, particularly nutritional treatments. But a lot of complementary alternative herbal treatments can have interactive effects with medical drugs and so it’s important to find medical practitioners who are sympathetic to what you’re trying to do and to be very clear about what other things you’re taking, even herbals, because herbals are, to be effective they can’t be that benign. So you’ve got to be clear on what the interaction effects are. I wish I had had greater possibility for things like massage therapy. Physiotherapy I think can really help during certain stages of chemotherapy. There are just a lot of adjunctive therapies and then as I say the big one is better nutritional counselling, that I had.

Arthur Frank said Well after that I had surgery which was really not much of a problem. I mean er an orchiectomy as we call it in Canada is about like having your appendix out in terms of surgery, it’s just not a major operation. The loss of a testicle was a big thing for about a week and a half may be. I mean at first there was this great sense of loss and particularly because your pubic hair is shaved, you’ve got this scar, you’ve got surgical dressings. I remember the scrotum just kind of hanging there and I did feel a definite sense of loss. Again I would say that really lasted for you know no more than 10 days or so because the, the surgical site quit causing me any problem within 2 or 3 days and then very quickly I was moving onto chemotherapy and I had other things to worry about.

Before you go on can you just expand a little bit about your sense of loss, was it, I don’t want to put words into your mouth?

Arthur Frank’ Well

In a sense of your masculinity or part of your body or

Arthur Frank’ Both, both I mean theres this common expression, at least in North America where you talk all the time about balls you know “that really took balls,” or “hes really got balls,” and all of a sudden you don’t have balls, you’ve got ball and so there is a kind of threat at least to masculinity. It was important to me to realise very quickly that sexual function wasn’t impaired at all er and really that the funny thing (laughs) is that once I got used to having one testicle which was really again very quick it all of a sudden seemed incredibly clunky to have 2. I mean the idea of “well don’t they bump into each other/” and they do bump into each other and all of a sudden having 1 just seemed like a very natural and even sort of preferred way to go through life.

Arthur Frank said And then I was amazed to begin to have these symptoms that I had an intuition might be cancer very early. Like about half the people I think who have testicular cancer I went through a long period of misdiagnosis. I first began to notice a lump on one testicle in July, I wasn’t eventually operated on until October and during that period the secondary tumours grew very quickly as of course they do and I was in extraordinary pain, back pain and I couldn’t sleep at night and so I was in pain, I was sleep deprived and physicians were insisting that they couldn’t feel anything unusual around the testicle. Now of course they did not get a urologist and this went on until I’d finally been in the hospital for a couple of weeks and finally a urologist came to see me and it was very quickly and easily diagnosed. But since then the studies I’ve seen which were a small sample have all indicated about half men with testicular cancer do go through this period of diagnosis. I think one of the most difficult issues that that sets up is the problem of trust because then I really entered medical treatment for what finally was diagnosed with a strong suspicion of the medical system that it had failed to diagnose me through these months of as I say very extreme pain.