Melanoma - muck and marvels

THAT conversation with the kids

2010-04-28T20:55:18Z

Putting my two youngest to bed tonight, my 4yr old said, 'I'll be sad when I'm grown up because I won't be able to see you anymore'. 'Why's that?' I said. 'Because I want to be a horse rider'. She seems to be thinking that when you grow up, you are either one thing or another, and not, say a Daughter and a horse rider and a Mum etc! So I explained that I would still see her no matter what she was going to be, I pointed out that I see my Mum, her Granny, and that she only lives around the corner. I carried on that I would always see her, although I started to lose track and stumble, trying not to say the wrong thing.

Then my 6 yr old piped up 'What if you die?' OMG I felt like I'd been punched in the stomach. The obvious answer of course we all want to say is, I'm not going to die, don't worry about that, but I couldn't say it. On the spot I said 'Well if I die then I won't be able to see you will I?' Matter of factly, 'But I promise if I die I will always be looking down on you, from the stars'. 'The stars?' she says 'Yes, I'll be the brightest star in the sky' 'But I thought people go to heaven?' Eek! 'yes we do but thats in the sky with the stars isn't it' I said. 'But how can you see us?' 'Well' I said its like magic when you die you can do anything you want, and I would want to be watching over you'. 'So is Great Grandpa a star?' 'Umm, yes probably'. 'I don't want you to die' she says, repeated by 4yr old. 'I don't want to die either!' I said 'I want to be with you always'. But of course you know everyone has to die eventually. Now stop worrying about that and get to sleep'.

Thank God they were happy with that little explanation and went happily off to sleep. I breathed a huge sigh of relief when I left their room. How random was that? Are they picking up on whats going on? I mean I know they know 'Mummy's poorly' and I spend a lot of time at the hospital but I look well. Hopefully it was just typical kids wondering about the bigger picture. Now I'm thinking back over it, did I say the right things? I was so on the spot I just tried to carry on chatting like normal.

Sorry if this is a little too personal or emotive, but I wanted to share as I'm sure I'm not the only one here dealing with this type of thing.

more photo's. SOME GRAPHIC view with caution

2010-04-28T14:14:50Z

My last operation 08/04/10. They used the previous scar from my pelvic clearance in Feb 09, then cut it out and made a new one.

Below is a picture of my skin graft now, nearly 4 years on! It doesn't notice nearly as much as it used to and I feel comfortable not to cover it up as it doesn't stand out since the redness went.

This is a picture I took immediately after my pelvic clearance that I had in Feb 09 to remove a mass from my pelvic nodes.

Photo's, surgery SOME GRAPHIC do not view if you are likely to be sensitive.

2010-04-28T13:37:02Z

My first major surgery was the WLE, SNB and split skin graft. June 2006.

Sentinel Node biopsy from behind my knee. These nodes were negative.

Sentine Node Biopsy, groin. Three of these nodes were positive.

The dressing on my thigh was on the donor site for the skin graft.

Having the taples removed from my split skin graft. June 2006.

follow up with surgeon 3 weeks post op

2010-04-28T10:50:09Z

I'm fuming I just wrote all this out and then lost it!! AAAARRGGHHH!!!!

Anyway, again!!

Yesterday I went back to see Mr Sharma at St George's. He was one of the two surgeons who operated to remove my last tumour 3 weeks ago. The wound has healed fantastic, I'm so pleased with it its so neat! I'll show it on here when I can work out how to publish photos in this blog.

The lab results confirmed that it was melanoma, no surprises there as I'd already been told it had doubled in size since the CT. They also confirmed that they'd managed to remove all of it with good margins which is great as it had been difficult for them to get to, and remove. So job well done!!

The main problem I have now from the op is nerve damage (peripheral neuoropathy?) that has left me with burning pain on the front and outside of my left thigh. Mr Sharma said this is due to him having to disect the tumour from a bunch of nerves. (He could have cut through the nerve but that would have meant permanant damage) this will get better but will probably take months. He has prescribed me a drug to try called Gabapentin. Apparently it can have pretty harsh side effects so I'd be interested to hear anyone else's experience with it, good or bad!

Friday I'll be going to see the other surgeon and my oncologist to discuss where we go from here. Assuming I'm still disease free, I've no idea if there are any options for me other than sit and wait. I'm guessing not. Does anyone know more about stage 4 options? NED or not, I'd be interested to hear.

I'll leave you with a little gem from my 6yr old daughter Kayla this morning. My husband went in to wake her up for school, she said VERY crossly..'I don't come in your room in the morning and wake you up do I!!'

Its these moments that keep us smiling :o)

Introduction...

2010-04-22T17:29:00Z

I was diagnosed with melanoma in May 2006, after a 'mole' was removed from my left ankle after giving birth to my 3rd little girl. I was sent to St George's hospital in London to be under the Melanoma team there. A daunting place at first but somewhere I've become comfortably familiar with! I had a sentinel node biopsy (sentinel nodes removed from behind my knee and groin) and a skin graft. The snb was positive in my groin so I then went on to have a groin dissection. Then in Feb 09 after a very painful 08, I had a large mass removed from my pelvis along with a pelvic clearance. I was on the Avastin trial from May 09 until January 10, when a CT showed a nodule in my abdomen/pelvis, somewhere next to my colon. I had this removed on 8th April and am now waiting for follow up with the surgeons and oncologists next week.

I'm now 33, married my husband in August 2008 we have three beautiful, fun and frenzied little girls who are 11, 6 and 4. The shock of being diagnosed with cancer has thankfully passed, I would never want to go through that again. However, the emotional rollercoaster that came along has led us to some bad times but also having learnt to appreciate the small things and life in general, some truly wonderful ones. Hence the title muck and marvels.