Living with ocular melanoma

2009-12-01T11:28:08Z

Dont know where to begin . iItis now three years since I was diagnosed with Ocular Melanoma(from now on known as OM). Which on original diagnosis was small enough to be treated successfully and I would be able to go back to work within a month. However no one took account of the fact that this tumour was going to do what it wanted and would not be dictated to. The following procedure of putting a radio active disc on the tumour with the idea that it would shrink over a period of time did not work I therefore I had my right eye removed.

The main concern at the time seemed to be that the cancer would spread to my liver. Lo and behold it had not and therefore I thought not long now and life will resume to normal.Just got to wait for socket to heal and get prostetic eye but no old OM had other ideas and within three months of having my eye removed it had taken up residency in my dermis and multiplied by five but still not my liver. So the five lumps were removed.

I went through a course of chemo which lasted for nine months but as soon as lumps were removed they re appreared somewhere else . At the end of the nine months I had another seventeen removed and some more chemo but the CT scan showed that OM had also taken up residency on my lung( but still not my liver).

It is now three years since this all began and lo and behold the last scan showed that I have brain mets. I made the decision with much soul searching and by driving people mad (as I always do) with questions ,that I would have radio therapy to shrink back the mets. Which I had about four weeks ago and I am now waiting to see what happens.

I guess the thing I have learned is that because this is a rare cancer no one knows for sure how it will progress. At first I felt as if I was alone with something that I had never heard of but as time has gone on I have found the support needed and am lucky enough to live in a area that not only has a good oncologist but we also have the Helen Rollason Chemo unit and Farleighs Hospice . I also now have a macmillan nurse which was really strange as I have always found it hard to ask for help. Like many people thought you dont actually need all this help untill you ar dying. How wrong could I have been.

Like everyone, I suppose, I have good and bad days but am learning to live with OM( although would prefer if it moved out) . I am still determined to live as well as I can for as long as I can because no one know for sure what will happen.

I was not sure how to start a blog or what to write but it would certainly be nice to hear from people about how they cope.

10.12.2009

Now four weeks since radiotherapy have had a few hairy moment not least losing all my hair for the first time. Was always worired that if that happened then I would look sick. For me that is exactly what happened however I tried to take control of the fact I would lose my hair before it actualy fell out , sorted a wig and hats but was still of the opinion that thus far nothing had quite worked out so I may not lose my hair.

But no it did come out after about a week and it was a case of pulling it out by the hand full. After a couple of hours I decided to take the sissors to it and cut it within an inch of my head.This I felt put me back in control.Walked around with a bag pulling out the short bits untill all that was gonna come out did.

Getting information initially about wigs seemed to be a problem for me as I did not know where to starat.When I visited the hospital they were brilliant and told me all I needed to know.

There are lot of hairdressers who are part of a charity which helps people who have lost their hair and will help as much as you need. Which was great because now I dont have to look ill and can get on with living.

Not say that the effects of the steroids is any less or that I dont get pain form the rest of the melanomas in my dermis but I am back feeling that I am living with this and need to get on with what we want to do.

kimmaphy's blog

Living with ocular melanoma