No title necessary...

Week 52 - It ain't over till the fat lady sings

I don't know whether to be relieved, or relieved.... It is still sinking in: I was more worried than I realised. But today I got the results of my full-body PET/CT scan, and it is NEGATIVE! So there it is: After a year of interferon, we appear to be winning.

I know that this is not the final picture. This melanoma could re-appear at any time. And we all have to die sometime - The only questions are how? and when?

But for the present, I only have two more interferon injections, and then I can start getting my body back to normal. I can't wait to get back to gym, and walk the dogs, and build up my strength again, and all the other things that I have put on hold over the last year.

Peace!

Week 51 – How to get through a CT/PET scan

The big news this week is that I went for a “final” CT/PET scan today! I don’t have any results yet, and will only get that next Monday when I have an appointment with the oncologist.

I was so worried about the actual scan itself – more so than the possible results. At my first scan, a year ago, I suffered quite badly from claustrophobia, and had to take a couple of pills to get through it. So I was building up this fear in my mind. This time was longer, as they did two scans, covering from the very top of my head to the bottom of my feet!

I discussed my fears in advance with them, and I was given a dormicum tablet, and this helped greatly. Also, a couple of weeks back I decided that I had to prepare myself with some positive imagery, and I planned to spend 20 minutes every day practicing. However, I somehow “forgot” most days, so I did not do much practicing. I think this was because I really wanted to put it out of my mind, and put off the evil day.

Anyway, I did use some imagining, and it seemed to have a good effect. I chose as a subject the beach at Sedgefield, in the Eastern Cape. We have been going there for close on 40 years, and I know and love this place. I pictured myself getting out of the car at the beach, walking down the old wooden steps to the beach, then taking off my shoes before walking down to the water. I walked along the beach, getting my feet wet, and remembered all the nice things I have seen there: The gulls, who never let you get too close; the periwinkles which breed in the sand; the occasional piece of dead jellyfish, which drive the periwinkles wild – must be good food for them! The Black Oystercatchers, which are protected on these beaches; Once we even found a seal which came up out of the water and was sunning himself on the sand. The beach runs on for a long walk, around a small bay, and over some rocks, until you reach a small island which we call The Sphinx.

Anyway, you get the idea. I found I could picture myself there, and it helped to take my mind off the scan. When I tried this at home, I found it so relaxed me that I went to sleep, and woke up 10 minutes later, wondering where I was!

The scan must have been worrying me more than I realized: When I got home I felt rather flat… And had to think carefully what I wanted to do for the rest of the day. I think I was concentrating so much on the scan that I could not think past it.

So next week I will find out what the scans show. I am “cautiously optimistic” that the scans will be completely negative! We caught the original melanoma fairly early on, and I have been on interferon treatment for almost a year. I had some chest and torso ultrasounds a few months back, which showed nothing. And those of you who have been reading my blog know that I have been working hard to do everything in my power to make the treatment a success. I lost some weight, I have tried to keep active, both physically and mentally, I have improved my diet, and I have been taking some good vitamin supplements. I have also been watching my health, and have probably overdone the visits to the dermatologist!

So, next week all will be revealed!

On another topic, I continue to be amazed and impressed by the wonderful (and sad) stories I have found on the internet. The stories are unique, each written from the heart by someone who is battling this scourge. Each person brings a new view, and I have found enormous strength in reading them. Not all the stories have a happy ending, and I have cried at a few of the losses. For a while I stopped reading other stories, as they just made me too sad, and I felt I could not cope with them.

With the way the blog world works, these stories remain on the web, and are still accessible, unless someone has taken the trouble to remove them. I’m sure this is not an original thought, but I wondered about whether one could collect them together in some way, to make then available to those who will follow us. I first thought of publishing them in a book. This may work to some extent, but a book is limiting in many ways: It would become fixed at a point in time, and miss out on new additions. Also, it would be fairly complicated to obtain authorization from each author, or author’s family, and this could further limit the range.

Another way would be to simply publish an index on the web. This would point to the original document, wherever it may reside. I don’t see any problem in doing this, and I don’t think anyone would object, as the source material is already available in the public domain.

What do you think? Could we start such a list? Or has it been done before? It could be a combined effort, not depending on any one person, and could have a continuity all its own.

Week 50 – How to warn someone about skin cancer

A couple of weeks back I was dealing with some family business, and I spent some time standing in queues at a bank and a government department. In both cases I was there for what seemed like ages, but was probably only half an hour or so.

When you are in a queue there is not much to do except observe the other people around you. If you brought a book or magazine you could at least read. Talking on the mobile phone is a no-no, but you can catch up on some text messages.

So, I was behind a nice lady in this queue. It is late summer here, and she was dressed in a sun dress. I always notice girls with a nice tan… But I couldn’t help noticing that she had a couple of suspicious looking moles on her shoulder and arms. Now, over the last year I have learnt a lot about skin cancer. I know that not every mole is dangerous, but I also know that it is better to see a dermatologist early rather than late.

So, what to do? I think all of us in this melanoma boat have been through the same experience: To start off with we probably don’t take it seriously. And even if we do, we think it will be easy to “fix” the problem – a little liquid nitrogen, or some minor surgery, and the problem will be gone. But if it develops into melanoma all the simple rules go out the window.

I know from many visits to my dermatologist that he can take one look at a mole or mark, and almost instantly classify it – usually as something benign. But when I was first diagnosed with melanoma, it was slightly different. He removed a small growth, and sent it away to the pathologist. I did not really think much about it, but he called me very early the next Monday morning, and wanted to see me immediately. And within another day I was in the clinic for some surgery to remove more material from the site!

So, what to do? Should I introduce myself in the queue, in front of many other people, and suggest she should see her GP or a dermatologist? Will she just get embarrassed, or will she get upset or worse, and tell me to mind my own business? Or will she think I am trying out a novel way to meet girls, and just ignore the whole issue?

I suppose we need to recognize that each person has their own life, history, and problems, about which we know absolutely nothing. So it would be dangerous to jump in and assume that our approach would be understood. In this country, there could be language differences. The lady-in-the-queue may have a skin ailment, and may be only too aware of it … and will not be happy to have attention drawn to it in public! Or she may have a more serious problem, such as HIV/Aids, or eczema, acne, psoriasis, or even shingles.

So, there seems to be no easy way to decide what to do. I have found in other circumstances that a good way forward is to tell my own story, even if only briefly. This will set the scene, and establish my credentials – Not a pick-up line, etc. Then one can decide on whether to raise a concern, and suggest a course of action. Not so easy to do in the queue at the bank!

Makes sense to me.

Week 48-49 – Cape Town family visit

Been away in Cape Town for the last week. Catching up with all the family, and doing all the holiday things. Eating too much… I put on about 2 kgs in 7 days – not too good!

Started off feeling quite good, but after a few days it all caught up with me and I had to take a day off – Spent some time reading and generally keeping quiet. However much I would like to ignore it, the interferon has a continual effect. Some days are better than others. I have learned to take it as it comes – It is just very frustrating to want to do more than I can, and then be hit by fatigue for a day or two.

On Monday morning we went out early with my-nephew-the-pilot for a flip around the peninsula. Was absolutely fabulous, no bumps or turbulence. About an hour’s flight was over much too soon! This picture shows Table Bay with Table Mountain in the background, and a good view of the ever-present “tablecloth’ on top.

The mountain is just over 1000 metres at its highest, and it forces the wind to rise rather rapidly. The tablecloth forms at the level where the dew point causes moisture to condense. Although it looks static, if you watch carefully you can see it continually forming on the one side as the air rises, and evaporating again on the other side where the air drops.

Cape Town is one of my real favourites. We spent a year here on a contract, and I spent many weekends trying out all the climbing routes. Now that I am on interferon it is really frustrating – knowing I can’t do any climbing! But in a month’s time that will be over and I hope to be getting my strength back. So the next visit I will pack my boots again.

Tuesday we flew back home. Getting up early and getting to the airport etc was quite a strain. But once we were back home I really felt lousy – I think what really made it worse was leaving sea level, and returning to altitude – We live at about 1600 metres above sea level, and there is definitely less oxygen at this altitude!

Had a call from the PET/CT scan people today, and now I am scheduled for my scan on 20th March. I don’t mind admitting I am very apprehensive about this. But I have something great to look forward to, and that is getting to the end of the interferon treatment.