Day 24 – Results of all Kinds

Today I am really inspired to write as I have had such a positive day yesterday on so many levels! I have good news a plenty.

The output to my bag, i.e. the contents from the leak have now dried up and this morning there is nothing in my bag – this means that the fistula is healed at the source and that is the best outcome and it took the minimum of 2 weeks to do so. The healing TPN food fed to me by vein has kept me going and allowed my body to mend and I am so grateful that I live in this day and age that these miracles are able to happen.

So as it was going in this direction my consultant Mr. Lamah came to see me and said I could start eating, so yesterday I had a very small amount of chicken soup, a little mashed potato with cheese and jelly. But best of all I could have a cup of tea, it was the only thing I really missed. I am amazed that I have not felt hungry at all and in fact it was a bit of a relief not to eat. So the little eating I did stayed where it was supposed to go and did not reappear in my bag. Everything seems to be working well.

The next piece of news is that I finally have a diagnosis ….. Wait for it

Maesentgeric fibromatosis/intra-abdominal desmoid tumour (a Desmoid tumour for short).

This is a very rare type of sarcoma (solid tumour) and happens to 0.03% of cancers. So both Rowena and I have had rare sarcomas. I great this with mixed emotions as hard to be in a group of people who suffer from something rare as there is no support group. If you are diagnosed with something that others have then there are charities, information and support. With Rowena we only ever found one other person whose daughter had the same as Rowena and survived (and then three others who had it in different places). The oncology CNS/Matron at the Montefiore had never heard of it, to put it in context, and she has been looking after cancer patients for many years.

The better news is that because it is rare I am going to be cared for by the Sarcoma team at the Marsden, so I am pleased about that as that is about as specialist you can get and so will have the most up to date treatment possible. In the little research I have done it looks like the first line of treatment is remove the tumour whole and then that is it. This has been done, my surgeon is 100% certain he removed it all. The downside is that it has a 50/50 chance of coming back and the second line of treatment is more aggressive as you can imagine. However this is information from the internet and The Marsden will have their own opinion on what will be done and so I wait and see when they contact me.

The final result was that I wore a dress to parents evening! Rowena had been adamant that she did not want her teachers to know that I am ill, so apart from the housemistress, one of the teachers who I tap dance with and one dyslexic teacher Rowena has confided in, no one knew. So we kept it that way. It was physically hard, walking up stairs is tiring, but doable for me, and just being on my feet for a while is quite exhausting. But I am so glad I made it.

Our first parents evening was in 1998 with Mrs Ward at Burgess Hill School, its will forever be etched into my memory she had us all sitting on the tiny chairs provided for the 4 year olds and she sat in the adults chair. She talked down to us all and told us exactly what she wanted of us. I don’t think that any of us dared even to ask a question! Skip forward this was the final one 20 years later. I am so proud of Rowena they were so happy with her. She and Mark are off to Glasgow on Friday and fingers crossed for that interview, this is where she really wants to go although Edinburgh is a close second and she might change her mind after the course open days. I hope she gets the choice, but Edinburgh will be a great destination if she does not.

I think I have approximately a further week here transitioning from the liquid food to a low residue diet, and then a few months to get me back to normal. A long slow process.