Reflections - 2 years on.
When I was diagnosed with TNBC, I was told that it was rare and the most aggressive of the Breast Cancers. It scared the crap out of me - That was 2 years ago.
When I joined this Group, it had not long been formed and there were around 19 members - today there are 138. Given the number of people diagnosed with BC on a daily basis - that is just over 1 person pw to join this group. I have found that I am normally the only person in a group of "survivors" with TNBC. As my Dr said to me "It has the word "RARE" attached to it, so of course you had to have that one"
While it is "Rare & Aggressive" it no longer scares me. Over the past 2 years, I have met a couple of ladies who are "down the track". One of them is 6 years on and the other 20. Besides that I cannot change the diagnosis so dwelling on it is a waste of valuable living time.
For me - It is exactly 2 years tomorrow (28/09) since I had the Bi-lateral Mastectomy that saved my life. The Bi-lateral was by choice as my left breast had to go and I didn't want the right one to feel lonely - for me that was the best decision.
I have also chosen to not wear prosthetics for various reasons - again a personal choice. Partly because of my warped sense of humour as when I received the post surgery bra in the BCNA care pack with the soft padding, it reminded me of the movie Mrs Doubtfire, but there were no saucepan lids included. To this day, I have not tried it on. The one time I thought about trying, I picked it up and got a fit of the giggles that turned into full-scale laughter with tears running down my cheeks. Obviously, this is not for me.
As for my health in general, the mild leukaemia which compromises my immune system that I have known about for just over 5 years is rearing its ugly little head again (the chemo knocked it about for a while) - but that was to be expected. My BP, cholesterol & weight are at unacceptable levels - all of which are a work in progress to try and rectify. While diabetes is in the family, so far I have not added that to the list. At the moment, these things rarely affect my quality of life or how I live it.
One of my personal milestones was June 4 last year, as on that day I was exactly the same age my mother was when she died and she did not have cancer. She had been a diabetic since she was 13 and her health issues mainly related to that. Up until then, even though I was medically going ok, I think I was waiting to die, but on that day I walked outside, felt the sun on my face, heard the breeze rustle through the gumtrees in the back yard and had my horse walk up to me and nuzzle me on the shoulder, while the dogs were chasing a ball. I remember feeling sad that my Mum was no longer around to enjoy these simple pleasures in life and for the first time in a long time, I actually felt alive. The strange part about this was that outwardly, I had portrayed a positive attitude, which I believed, but did not actually feel.
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Now, I thank my long gone boobs and BC for giving me a wake-up call to go out and enjoy life - before I took many things for granted and I just existed - but I did not realise that at the time. A couple of those things are:
* Having lunch / picnics / walks with family and friends.
* Taking the dogs (4) down the beach and playing in the water with them.
* Walking with the local Heart Foundation Walking group.
* The scents and aroma’s of many things.
* The sounds of nature around us.
* And the list goes on.
I recently had a friend visit from the UK. It was the first time we had seen each other in nearly 40 years. Until she arrived, I think she thought she was coming to visit a sick person, before I kicked the proverbial bucket, as in many of our emails and communication she had stated that she did not want me to exert myself or do more than I could manage. If I had had a different mindset, she probably would have been right, but she soon learnt differently and in the 2 weeks she was here we went on a road trip and did the following things:
* Whale watching at Hervey Bay.
* Ate fresh prawns & drank champagne on the veranda of a true Queenslander (built 1860's) in Parkhurst.
* Visited the Aboriginal Cultural Centre in Rockhampton.
* Snorkelling at Lady Musgrave Island (southern tip of the Great Barrier Reef).
* Kayaked at the Town of 1770.
* Went to Outback Spectacular at the Gold Coast (I upgraded the tickets to the Winners Circle which gave us a behind the scenes tour as well as our own wait staff etc).
* Played catch with some of our food at the Morgan's Seafood Restaurant, in the Teppanyaki Room as they throw eggs and rice at you to catch in a bowl. All part of the fun.
Some of the things on my "bucket list" are:
* To visit my friend in the Yorkshire Dales & ride her beautiful Dales Ponies - hopefully I can afford to do it next year in August when she has holiday's (she is a teacher).
* Go kayaking (have already done it once more) and I want to do it a few more times to see if I still I enjoy it with the intent of buying my own kayak.
* Get a bike (hopefully with training wheels) and go cycling as I never had a bike as a child.
* Get a little motor scooter to "scoot" around town - would have to be more fun than driving my monster 4wd all the time.
* Start horse-riding again. This will depend on whether I can fix my boy who has had a series of abscesses and is lame. As the saying goes “No Foot – No Horse”
* I thought of adding grow up to the list, but I don't think that would be much fun.
I still have days where I am tired and simply do not want to play (apparently the Leukaemia can be a contributing factor to this) - they are my rest, recuperate, read a book, knit, sew, make cards (papercraft) and stick my head in the sand days. Absolutely no work gets done on those days.
However, I have found that the more active I am, the better I feel both physically and mentally. On that note, I had better get off my butt and go and cut the grass as it won’t cut itself. Then I will sit back with a cuppa, relax for a while, and watch it grow again.
LAUGH LOTS AND CRY IF YOU HAVE TO.
Comments
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We sound very simular in our attitudes to this rubbish. For me it was one thing to get my head around the gravity of having TNBC, but then I threw in the BRCA1 gene mutation & the shitty numbers that go along with that, and I simply tell people, "Well, I'm not going to half do Breast Cancer....." what else can I say? Theres no point crying or digging myself a hole & waiting for it to get me. I just have to get on with my chemo for now, hysterectomy in January & double reconstructive mastectomy in Jan/Feb. After that it's time to hit LA & Disneyland, sell the house, ride & live more!
Am I scared about the return of my cancer? A little, but I'm not going to let TNBC & BRCA define my life. I'm only 41 & have a whole lot more living to do.
As for your scooter thoughts....DO IT!!!!! I got my bike licence about 4 years ago & I absolutly feel alive with the engine roaring & the wind in my face. I'm sure scooters are just as much fun! I ride a Ducati Monster. We're doing North to South Vietnam for my 50th Birthday
Love Sam xoxox
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Dear Mrs Doubtfire
Lovely to meet you and to read your post.
I felt so many different emotions while reading. There was sadnes and tears, there was laughter, there was inspiring thoughts and thoughts that I need to start a bucket list.
I have been through my BC journey which is done and dusted as best you can with Femara in the background and ongoing lil things from the onslaught of chemo but I am alive and kicking.
I to have been diagnosed with something "rare" and it isn't BC this time. It is called radiotherapy Morphea so I am also classed as" unique" just like yourself. Aren't we the lucky ones.
I am not quite sure what is ahead of me but your post has certainly got the emotions happening and as far as I know I should be alive and kicking at the end of my next journey.
If your sense of humour and fighting spirit is anything to go by you will be around for a very long time. Too many things on the bucket list to consider going anywhere that is for sure.
Don't ever grow up Mrs Doubtfire, we like you just the way you are.
Lots of love today, tomorrow and always, Mich xoxooxxo
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Dear Mrs Doubtfire
Lovely to meet you and to read your post.
I felt so many different emotions while reading. There was sadnes and tears, there was laughter, there was inspiring thoughts and thoughts that I need to start a bucket list.
I have been through my BC journey which is done and dusted as best you can with Femara in the background and ongoing lil things from the onslaught of chemo but I am alive and kicking.
I to have been diagnosed with something "rare" and it isn't BC this time. It is called radiotherapy Morphea so I am also classed as" unique" just like yourself. Aren't we the lucky ones.
I am not quite sure what is ahead of me but your post has certainly got the emotions happening and as far as I know I should be alive and kicking at the end of my next journey.
If your sense of humour and fighting spirit is anything to go by you will be around for a very long time. Too many things on the bucket list to consider going anywhere that is for sure.
Don't ever grow up Mrs Doubtfire, we like you just the way you are.
Lots of love today, tomorrow and always, Mich xoxooxxo
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Dear Mrs Doubtfire
Lovely to meet you and to read your post.
I felt so many different emotions while reading. There was sadnes and tears, there was laughter, there was inspiring thoughts and thoughts that I need to start a bucket list.
I have been through my BC journey which is done and dusted as best you can with Femara in the background and ongoing lil things from the onslaught of chemo but I am alive and kicking.
I to have been diagnosed with something "rare" and it isn't BC this time. It is called radiotherapy Morphea so I am also classed as" unique" just like yourself. Aren't we the lucky ones.
I am not quite sure what is ahead of me but your post has certainly got the emotions happening and as far as I know I should be alive and kicking at the end of my next journey.
If your sense of humour and fighting spirit is anything to go by you will be around for a very long time. Too many things on the bucket list to consider going anywhere that is for sure.
Don't ever grow up Mrs Doubtfire, we like you just the way you are.
Lots of love today, tomorrow and always, Mich xoxooxxo
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Hi We have a support group for triple negative diagnosis. Coffee mornings are once a month in Brisbane but we also E-mail a monthly newsletter and have a facebook site. There is a luncheon onece a year in March and participate in events and forums run by bcna. E-mail: triplenegativebreastcancerawareness@**** this will put you on the mailing list to keep you updated. Regards Lynda
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Hi We have a support group for triple negative diagnosis. Coffee mornings are once a month in Brisbane but we also E-mail a monthly newsletter and have a facebook site. There is a luncheon onece a year in March and participate in events and forums run by bcna. E-mail: triplenegativebreastcancerawareness@**** this will put you on the mailing list to keep you updated. Regards Lynda
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