LIAM'S JOURNEY

We attended the long awaited Genetics appointment on Thursday at Kenepuru Hospital.  I haven’t written before now as I thought I would give myself time to calm down.  Unfortunately 3 days hasn’t done it, I am still angry.  The professor that we saw was very nice and had obviously done a fair bit of research into Liams type of tumour, however had not had a look at any of Matthews history as privacy laws being as they are they needed my permission, yada yada yada.  He did write down a family tree, mostly focussing on the Todd side.  Considering that Matt had 8 siblings he decided that there would be more evidence of cancer if there was a genetic link.  What probably pissed me off the most was that he kept telling me that there is no documented link between a Glioma (Matts tumour) and myoepithilial carcinomas.  Well hello, there is hardly any documentation on myoepithilial carcinomas full stop!!!  I find it difficult to believe that they could make these decisions without even looking at Matt’s history, or going into a more detailed family history.  Obviously I don’t have all the needed information about the Todd side as I joined them in 1991 and it wasn’t usually the topic of conversation over a nice cup of tea! 

There are documented rare links between glioma’s and bowel cancer (Matt’s Grandad passed away at a young age from that) but again nothing to link it with Liam’s type.  What I want to know is that isn’t there always going to be a first instance where a link is located?  Why does there already have to have been a link discovered. 

I was then addressed by the Professors supervisor who basically sat there and said to me “Most people in your situation think they are pretty unlucky” What the???  Nah I don’t think that, hell I think I am pretty bloody lucky.  Really what a stupid thing to say.  Then she went on to say that no they would not be doing anymore research into it unless I came up with more information.  I guess that is saying that hey if someone else in the family gets cancer give us a yell.  At least the first Professor said that they wouldn’t be able to give me an answer by the end of that appointment and would do more research, but then she comes in and says, no, no link, see you later. 

As you can tell I am still fuming.  I felt like a child who was being told off for wasting their time, I have never felt patronised by any of the specialist we have seen throughout both Matts and Liams treatment, but by christ that was exactly how I felt at this appointment.

I keep thinking that Liams tumour is so very rare that there has to be someone in the world who is interested in looking into it.  I did say that, with all due respect we are only a country of 4 million people, would there be a benefit of me contacting some of the Doctors overseas, but was shot down again and told that they had looked into the worldwide documentation, but if I wanted to to go ahead, but that it probably wouldn’t help.  Well guess what, I will be contacting the Doctors overseas, and finding somebody that actually does care, and may want to look into our histories, perhaps a student specialising in Oncology who needs to do a thesis or something.  Surely Liam must be of interest to someone???

I haven’t really got the headspace for this at the moment.  I have my first of 4 varisty exams starting on Friday, so once they are over I may be able to sit down and figure out a plan of attack.  But all I can say is look out I am on a mission!

Right, after that vent I feel a bit better, so will leave it at that. 

Becs