I had my biopsy yesterday. I hate all the unpleasant things you have to go through just to find out unpleasant news. They used a CT scan for positioning and a local anesthetic. After the doctor injected the anesthetic, I asked him how long it would take to numb the area. He said it has already numbed the skin but you can’t numb everything inside. So that scared me a little. All in all it wasn’t that bad. It was worse when the anesthetic wore off so it must have numbed the inside more than he said.
I asked him if I could look at the monitor to see where they are taking a sample from. He showed my a round ball shaped thing which I won’t call the tumour until the results come back. He said it was 2cm which was comforting. With the amount of pain I have I thought I would see tumours everywhere. I didn’t ask him if there were more tumours. I’ll leave that until Monday when I see the doctor who will be replacing my oncologist while he is on one months leave.
It is an unfortunate time for him to take leave because I felt comfortable ringing him up anytime I needed a question answered. This replacement, well as yet, I don’t even know his name.
I am quite please thought that if this all had to happen, it’s happening now in spring. Nothing like sunshine to put you in a good mood. I love the sun and I truly feel happy on days when the weather is perfect. The temperature is just right and you can feel the warmth of the sun on your skin. It really helps you to keep a positive attitude. On these days I just feel so lucky.
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14 comments:
Hi Anita, I hope all will be good news. I am thinking of you and what an amazing person you are! Keep those positive thoughts coming! It's spring for a reason because the world loves you :)
Shine on sunshine
Anita, you are an inspiration. So brave and keeping positive. I am sure that it helps. Please know that I am thinking of you and sending much love. Michele
Hi Anita,
Love reading your blog. You are so strong and always look out for the positive signs. Here's to many sunny days ahead,
Love,
Annette
Hi Anita
Feeling not so great at the moment.This meso has had its way with me. 2 tumours exiting my chestwall and back.With 2/3 of my lung now collapsed.Lyph nodes included and apparently now invading my pericardum (heart) and moving down thru my diaphram to my lower spine.Not to mention a constricted oesphagas and can only eat soups and soft foods.Things arent great but luckily no pain.Doc says I have 3-6 mths.
Just need someone to check in with as its difficult to discuss with people who don't know about this disease.Trawled the net especially for someone to be in contact with in Australia.I live in Newcastle.
Wish I too could be as positive as you but also know when to get real.Not everyone can fight this disease as successfully as you obviously can.
Thank goodness its spring.
Pete
Thanks everyone.xx
Hi Pete,
Sorry to hear things aren’t going so well. I know I’ve been pretty lucky so far because meso is an absolute bastard. I hate watching what it doing to so many fantastic people that I have met.
We have an amazing network of support that has evolved on Facebook for people with meso and their families. Do you have a Facebook account. If so, you can request to be my friend and I’ll introduce you to others.
http://www.facebook.com/anita.steiner
Just remind me in the invite that you are pete from my comments.
Also we have an amazing support group here in Melbourne. I’m not sure what is around your area but our president Rod knows a lot about the other support groups and could possibly put you in touch with them.
Also if you want to just talk you are welcome to email me. I think my email is on the sidebar of the blog.
Hi Anita,
Thanks for your response.
I didn't realise you live in Melbourne.
I think yesterday I was feeling a little sorry for myself.Sorry if I may have come accross negative.
Its just difficult some days to keep upbeat.
I have no right to be so negative when there are people out there fighting so successfully this disease.Its great that you have created such a place for people with Meso to participate.As I mentioned previously I have trawled the web for some support and found very little.
As you have gathered my name is Peter and I am 53 living in Newcastle.
I have 3 beautiful boys who don't live with me.
The truth be known I decided when first diagnosed (Last November) that I would not participate in Chemo as I was told it would make little differance to my longevity.
I also had little in the way of symptoms and was in a bit of denial I was actually unwell.I thus promised myself that I would reevaluate the treatment option once symptoms were apparent.
All went Ok for about 6 months and in fact still not feeling unwell found my doctors not interested in my progress saying that if I didn't wish to participate in Chemo why was I bothering to visit with them at all.
After this I lost confidence in them and again I searched the web for a doctor in Australia who may be better experienced.
To that end I travelled to Melbourne with my mother (Yes still hang out with my Mum) and met up with Dr Feigan from the Austin hospital.
Had a Pet and CT and Dr Feigan confirmed again that I was beyond surgery but could possibly participate in his radiation treatment.
He also seemed to be getting some good results that were encouraging but for personal reasons again I chose no treatment.
Since then things have gone downhill.I won't run through my symptoms again as I have already mentioned them.
Funny thing is I still feel OK...Must say just OK at the moment but nothing that I cant deal with.
No pain (some discomfort) not much breathlessness even though I have 2/3 of my left lung now collapsed.
The worst symptom is tumour invading my oesophagus making eating a chore...(Have lost about 10kgs in the last few months.)
All in all though I feel ok and don't feel like I am dieing.
I have some good family support coming with a family spread all over the country.
My boys live in Sydney which is not great as I dont get to see them often but my ex wife has been sensational understanding that I need to spend some quality time with them.
She recently arranged a holiday away (with her as well) and we had a nice family week away at a holiday park north of here.We have told them that my condition is terminal and they are coping OK except for my little guy Spence(13).Looking forward to seeing them at Christmas..
Unfortunately pallative care doc suggests that things have gotten a lot worse recently and he suggests 3-6 mths to go.
I am actually OK with that.
I actually think I will last a little longer than that but have taken the warning seriously.
Better to know than not I think and it gives me a chance to get things in order before I go.
Done my will.
Writing letters to my boys and family.
Even having to think about a funeral and where I would like my ashes to be placed.
Might sound morbid but it gives me a sense of peace.
Better than being rushed away without saying all those important things to people that are often left unsaid.
So thats where I am at at the moment.
Nice to get it off my chest.
By the way I couldn't find your email address?
Pete
Hi Anita,
Just a note. I read you are interested in any bugs in your blog...I wrote some stuff earlier today and when I went to post it and got an error message something like "Too many characters"
So I cut and pasted the last bit into a second blog to post and found out later that it had in fact posted the complete first edition...Hope that makes sense.
Anyhow thats why I have 2 sections posted today.
BTW have read most of your stories today to discover that in fact this is your personal site I hadn't realised that it is probably to share with your friends.
Happy for you to delete my comments as they might sound a little......well not in keeping with the spirit of your site.Maybe we could catch up via email offline.
Your call.
Pete
Hi Pete,
I noticed my email address for this blog disappeared from the side bar. I’ve put it back now but in any case it’s blog@anitalive.com.
If there are any bugs in the software there’s not much I can do about it because it’s all from Blogger. I get to use it for free so no complaints from me.
I started off the blog for family and friends but a lot of people with meso have come across it and tell me it has helped them and that makes me feel very good. As long as it’s not spam, I’m happy for anyone to take part in the comments here.
I was very angry to hear that your oncologist told you that chemo would make no difference to your longevity. I don’t know the circumstances that lead him to saying that but clearly your meso isn’t of the aggressive type or you would have died within 3/6 months plus you were in the early stages. I guess you probably don’t want to hear all this. Shoot me through an email if you want to discuss anything with me.
Btw I perfectly understand your feeling negative and 'sorry for yourself’. It is very hard to keep your chin up all the time. I have a 22 month old daughter that I desperately want to be here for and I the only thing i can really try to have control of is my attitude. It’s hard work. Hope to hear from you. Anita
"the only thing i can really try to have control of is my attitude.".Anita, powerful words.
I am running A workshop at the cancer council tomorrow for clinicians on strategies to support hope in our patients. hope it is ok to quote you Anita.
You are an inspiring and amazing person,
Love
Judith
Hi Judith,
Hope all is good with you. You’re welcome to quote me. Love to hear more about your workshop. Looking forward to catching up when you’re down in Melbourne. Itai is here this week. He joined us for dinner tonight and I am going to catch up with him tomorrow morning for brunch. He’s such a sweetie.
Hi Pete,
I never heard back from you since my last message to you in these comments. I hope I didn’t offend you in any way because that was definitely not my intention.
Also a friend of mine knows some people down your way in Newcastle with meso if you are interested in linking up with them.
Hi Anita,
Thanks for your thoughts.
Wrote you an email at blog@anitalive.com
It would be nice to touch base with others with Meso.
My email address is phnse1255@hotmail.com.
Hope to here from you soon.
Pete
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