Here's to my Journey!
Monday 14th November
Hi everyone
I hope this find everyone well and positive!!
I know it's been ages since I have been blogging but I have been in Hospital and had my surgery. It went pretty well, although I am pretty sore. They took out my Sentinel node, another lymph node and the cancerous lump.
The pathology came back with cancer all around the margins, the sentinel node full of cancer and the random tissue samples the surgeon took were also cancerous.
Oh well! Never mind...I never do things by halves!
So I'm back for more surgery next week (wk beginning 21st Nov) and subject to what they find I may or may not have a mastecomy. At this stage they will be attacking more of the area where the lump was and taking out the majority of the lymph nodes. This means that I'll have the drainage tubes as well.
I am meeting this week with the oncologists from Peter MacCallum Cancer Institute to discuss my suitability for radiotherapy. You see I have a very rare skin condition (just like my very rare breast cancer!!) called epidermolysis bullosa (also known as Cotton Wool syndrome). See what I mean - I never do things by halves!!!
This is where you are born with only one layer of skin instead of the usual seven and any knock/trauma scars badly or blisters/bruises. So you can understand why they are concerned about the day in/day out radiation and the resultant burns. I'm not so sure my skin could take it, so it will be interesting to see what they think.
I even went so far as to do some extensive research on the Internet (where WOULD we be without it I ask you??) and found out Stanford University in America had a whole circumulum devoted to determinology and it's where they train determologist studying various skin conditions.
Amazingly they had a whole section devoted to EB so I contacted the Associate Professor in charge to ask if during their studies they had come across anyone with EB who was about to undergo Radiotherapy and, if so, what was the outcome.
Unfortunately he did not have such a case recorded however he has put me onto his colleague who works at NSW University so I'm going to try to contact her to see if she has any recorded cases.
So far no one, including the oncologists have heard of anyone with this skin condition having radiotherapy.
It doesn't really bother me either way as long as they know what they are doing which I'm sure they do. It's ironic really as I used to work in the Radiotherapy Dept there about 10 years ago so I understand it all which is a huge advantage. I think it's helped me cope with this enormously. The Chemo (which I'm assuming and anticipating) should be ok.
I had quite a few visitors while I was in hospital which was lovely. I always find that if I'm in hospital there are two things that really cheer me up - a visit from my lovely husband and family and a visit from friends. You don't feel so lonely then.
Then when I got out lots more visitors dropped in which again was lovely.
So for the moment I'm taking it easy, doing a bit of Chrissy shopping on the Net and resting up.
My poor husband has been very upset especially when he found out that I had to have more surgery, but he now understands that this sometimes happens and is not uncommon (which i didn't know and I'm relieved to find out) and he seems to have accepted it more readily.
He has been a pillar of strength for me, always caring and worried about me. As have my family, especially my elderly parents and I'm trying my hardest to reassure everyone that it takes more than this to defeat me!
I'm still really positive and just want to get on with things - I'm famously impatient by the way!
And for once in my life I am accepting help from people because I'm SO tired! I think sometimes it takes something like this to jump up and bite you on the bum to make you realise you can't be superwoman, superwife, superfriend to everyone....even if you really want to.
I've decided it's time to stop and smell the roses and concentrate on getting better so I can be a better wife, daughter and friend.
I'm sure I'm going to make it.
Well time to sign off and think about bed....take care everyone out there.
See you tomorrow!
Comments
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Glad to see u back
Have missed your daily blogs. Not so good to hear u need more surgery
good luck with ur next round of surgery and yes rest up and get pampered!!! lol... will catch up soon
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Glad to see u back
Have missed your daily blogs. Not so good to hear u need more surgery
good luck with ur next round of surgery and yes rest up and get pampered!!! lol... will catch up soon
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Hi, Helen good to see you back , soo sory to hear that you need further surgery, but you will be ok . Glad to hear that you taking time to rest and concentrate on your recovery and let other look after you, enjoy it. Regards Monica
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Hi, Helen good to see you back , soo sory to hear that you need further surgery, but you will be ok . Glad to hear that you taking time to rest and concentrate on your recovery and let other look after you, enjoy it. Regards Monica
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