Titch's Journey.......living with incurable cancer.
Hi, my name is Titch aka Tania..... I am 39 years old New Zealander. Mother of 3 kids and nana to a one year old gal. I fought IDC breast cancer in 2009, (after 2 rounds of chemo, masectomy, and 5 weeks of Rads..... just under a year of treatments. I was winning the battle, and I had two years of clean health.... Living and loving life and thankful that I had beaten the cancer.
In February 2012, I found a lump on my shoulder blade - it was small. But rang my health team, and was asked to go in and get it checked out. With the ultrasound and biopsy it confirmed my cancer had spread into a node. So Ct scans were held.....
Last week was results, and the oncologist advised, the cancer has spread further than the node i felt, it is in lymph nodes in my chest, and then multiple lumps in my lungs. I knew this was not good. They then advised it was incurable. Surgery was not an option and treatment would be done to prolong my death......Timeframes they given is two years...... I had no idea I was so unwell, and had no idea my lungs were affected, I have had shortness of breath and a cough which would not go, but these were not limiting me in any way......... so why I feel well I am adjusting to this news....... I have incurable Lung cancer which originated from my breast cancer. Not even a smoker.
I am a fighter, and I have hope and do believe in miracles, but also realise that this news is what it is...... I am aiming for twenty years, definitely longer than the two the specialists are
So this is where my journey begins....... Titch's journey is about living life and making the most of everyday for however long that will take....... If you want to join me on this journey..... please come back......
Comments
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Hi Titch
Im so sorry to read this news but as we all know.........doctors cannot give us a timeframe. I've heard this said all to often and some many years later folks are still here and still fighting.Also each day brings on more treatments and your may be just around the corner. Keep the faith and come here often as this is the place to get all the love and support you need. God Bless!
hugs to ya
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Hi A new beginning.... Huggles back.....I do agree, that doctors do not know everything and timeframes are not able to be predicted...... I have the faith, hope and courage........to carry on living. The research is amazing into curing / treating cancer.
What I didn't put in my top bit, was my initial lump on diagnosis in 2009 was 6 cm and in my lymph nodes. I was Grade 4. I was advised my cancer was aggressive, so had chemo before the masectomy. My results on my diagnostic box was when surgery occurred, so I have personally seen how treatments can stop and shrink the cancer. I have faith in the medical specialists.
This site was my rock when I went thru treatments in 2009. The chemo discussion board for May 2009 -The May Marvels, was where very special bonds / friendships developed and i have maintained these. Hence why I have come back..... I know there will be others in a similar boat, who may want to share......
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Many of my family and friends are asking - Do I have a bucket List? The simple answer is NO, and I don't think I need one..... I do have my humourous one...... but that is just a giggle..... I don't need a bucket list cause I have chosen to live my life and do the things I want to when I want to do it.... So I have no unfilled dreams I want to fulfil........ I hope you all live your life just the same....... Live for the now, have no regrets....... Have fun....no matter how you think it is immature doing it....... We only get one opportunity at life, so make the most of it......
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I just wanted to share my friend Donna was given 2 years to live. She stated she needed 18 years because she needed, absolutely needed, to see her son graduate from college. She did, via skype and passed away a few days later. She lived 16 years longer than expected and a good quality of life for many of those years!
Had i not known Donna, I may have not believed this.
May we all live bravely with no regrets....I am following your journey with prayers for you.
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Hi titch, i'm sorry you got this dreadful news but glad you have no regrets. I truly hope you continue to live every day and stay strong for a very long time. I was struck by the 'togetherness' of your post and your beautiful picture. My sister hated the word 'incurable' she talked a lot about making friends with her new situation- and she did that. Cyn was very very sick when she was first diagnosed and was given months not years (although she lived for three years). She approached her journey with this diagnosis as she approached everything else in her life. She was tenacious and stubborn. Our other sister has been free of cancer for over 8 years but continues to be beaten by it and stopped living long before cyn did ( so very sad). Very very best wishes to you titch as you do things YOUR way xx
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Evening everyone, hi crystal and cyn... thanks for your sharing of your stories of people in your lifes. There is many inspirations out there, who against the odds still fought.
Today was a busy day.... worked half a day, then had to go to the hospital for a further CT scan of my pelvic area..... the hospital I had to go too, is about an hour away, but due to easter holidays and lots of people travelling on the roads it took a couple of hours. Thankfully the trip home was faster....
It quite strange feeling having this scan, you still get anxious about the results of it, but then knowing the news can't be any worst than what you already heard. Not sure when I will get the feedback. Then after the hospital went back to work, for a couple of hours.
I am meant to be preparing for camping, booked a couple of nights at a camping ground on a beach, for the whole family. But the weather is suppose to turn to showers tomorrow. So camping this easter may not be on the cards. Four days of no work, is something to look forward too regardless of what we do.
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Hello Titch (Tēnā koe)...
I just wanted to say I've read your story and you sound like an amazing and strong kiwi woman :-)
Have a great time by the beach - where are you going?
Jenn (kiwi bred - Auckland girl) -
Kia ora Jenn......
Had a great weekend camping with my kids and hubby. We were at a beauitiful bay called Orua Bay (Manukau Heads, Waiuku side). Went fishing and on some beach walks. So nice and relaxing, and the weather was perfect, had a few showers last night, but nothing drastic. Home now, and have two days to relax at home.
How is everyone.....?
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Come join us on the Stage IV section of the forum. You will see that many woman have been living for years with mets. Nobody knows how effective your treatment will be or not.
Would have loved to have gone to New Zealand at some point. My dream was always to go to Australia. Well, maybe next life!
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Hey Titch, Sounds like you had a great time away. We were supposed to drive to Nelson Bay (about 1.5hrs north of Sydney) and catch up with some of my cousins this weekend but I'm too achy and tired and didn't feel like leaving my comfy home. I'm having a pyjama day today...
Missing those kiwi Cadbury foil wrapped marshmallow Easter eggs - you can't get them here! Happy Easter!
Jenn -
Hi Coolbreeze I have popped in there, and had a look around....... just not posted yet......
HI Jenn Happy Easter too.....Wow no Marshmellow eggs. That is depressing......
I am having a quiet evening, got my sister in law and two kids visiting, and been feeling a tad unwell, so quite tired, I think caused by the packing / unpacking. Thankfully can rest tomorrow, before I go back to work on Tuesday.
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Hi Titch - sorry to hear about the progression on bc to your lungs. Your positive thoughts and energy come through with great zeal in your post. I have always adopted a "live in the moment" attitude. It sure makes life more fun. I definately like your take on refusing the 2 yr timeframe - 20 yrs is much more reasonable.
My DS, SIL, and DB were all in NZ for a month just this past Feb. My SIL has had a penpal in Christchurch since grade school whom they visited with. They had an amazing time. Their tours covered just about the whole South Island. I certainly enjoyed the virtual experience through their stories and pics.
Enjoy your weekend!
Peace and hugs to you
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Hi Titch,
What yhe ladies are telling you is true. While the cancer has metastasized tnere is a .ot they can do to keep you going. Br sure to koin us on the Stage 4 board. That is where you will see many women living with Stage 4 cancer. I am two years out from my Stage 4diagnosis and its always been in my bones and liver. Im still travelling and doing okay. You are right to enjoy each day all that. you can. It is all any of us can do. I will look for you on the Stage 4 Board.
Judie -
Hi Titch - another kiwi here, thinking of u from Christchurch - Kelleigh
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Hi Titch - saying hello from Switzerland. Packing my bags for a trip to visit my dad in the Philippines. It's such a long way, but at least it's not New Zealand!
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Hi Titch: Don't give up hope...I have a friend who has been living with stage IV for over 10 years and she still plays golf twice a week! She continues to get treatment and watches her diet carefully. Sending you prayers and positive energy!
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Hi Titch- I went through the May marvels with you back in 09. My heart just sunk when I saw your post. I have thought about you often and so many of the other ladies whom were part of that thread. Just wanted to say you are in my prayers. And dont listen to the Dr. They shouldnt give you a time frame. I hope you have many, many more years.
Warm gentle hugs. Debbie
How is Suzie, do you still stay in contact with her?
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I would be HONORED to take this journey with you...........I pray it will be many many many, seamless and joyful decades!
A loving sister from Atlanta, Georgia......USA
michele
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Hi Titch, sending you love and hugs from Christchurch xxxxxxxxxx
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Titch i am a fellow Kiwi living in Palmerston North. I am with you sis, you keep that beautiful positive attitude and you will be with us for ages to come. I had just had my follow up mamogram yesterdayfollowing rads six months ago and yet to find out results. My tumour was very small. 1.4cm, but i found out a couple of months later that if i had not had that mamo, i would not be sitting here. It was a particuarly nasty form of a ductal carcinoma and by the time it had reached any considerable size i would be either very terminal or not here, they gave Christmas just gone as my time if that had been the case. but they got me into surgery and radiation and stopped the spread as nodes all clear. so i am still here and hope i can be an encouragment to ladies like your self. am a little fearful of what results will reveal with recent mamogram, but i am vowing to enjoy each day and be there for you and others in need.
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Hi everyone, I have been reading the messages, but haven't logged onto my laptop for ages.....thanks everyone and a big HI to the fellow kiwis. Good to see so many of you on here. I have been keeping as well as I can, since the news I had two chest infections. Then there is the coughing, shortness of breath and then nausea. It is unlike any cough I had before. I am unable to walk up one flight of stairs without feeling like I run a marathon. I have been seeing the hospital every couple of weeks, and started Hormone Treatment, due to SE of Tamoxifen, it some injection. They are worried the cancer may have advanced so I have another CT scan next week, so they can compare results. If it has advanced, I will be on chemo again. At the moment I am appreciating not being on chemo.
For me I have been up to so much. As it is winter now in NZ, spending nights at home in front of the fire, just relaxing with my family. Weekends are crazy. The hardest thing about being in this position, is all your family / friends want to do something with you, it very hard to keep everyone happy and still do what I want to do. Everyone wants to take the cancer away, and change my situation, but helpless, so they want to do so much for me and my family. I have become very selfish with my time (Hospice call is "self love"), and only do what I want with who I want. So since my camping with my hubby and kids. I am still working, but for the first time ever doing 100% instead of 150%. I have been caving with my two daughters and hubby. Waitomo Caves in NZ is amazing. Been away with extended family up north, for a 50th Birthday. Gone to the movies for the first time in 6 years with hubby. Saw a wonderful kiwi movie, "the most fun you can have dying". The story of a man with terminal cancer who denies treatment, and takes off to europe and lives life to the fullest. Had alot of dinners with extended family / friends / family. Gone to live dance shows with friends. Been making memoirs for my family for when I am gone. Had photo shoot with my son and granddaughter.
Have been seeing a wonderful lady at our Hospice here, who just lets me talk about all my emotions and inner thoughts about incurable cancer, and living life to the fullest.
So life is still good.
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Kaara - I have heard so many stories of people living years, they all are very inspirational, and helps my own personal hope.
Debbie6122 - Hi gal, how are you doing? I think of everyone there often too, including those that are angels. Big hugs. Yes, I still see Suzie, we met for coffee at the hospital at my last appt, she was having her yearly mamogram, whilst I was getting biopsy results. We in touch mainly on facebook or via text. She has a beautiful property that she will be doing as a wedding venue / with accommodation, and is looking at also doing breast cancer retreats. I visited her a couple of times as it is the most perfect place to relax as well as see her.
midnight - hi gal, all the best with the mamogram results, I know they cause so much anxiety after having breast cancer.
To everyone on my journey.... Thanks for the prays and thoughts..... big hugssssss
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You've been keeping very busy! It's great to hear that life is still good!
I will definitely look up that movie.
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Titch- So glad you checked in, i was getting worried about you. Sorry about maybe having to start chemo again, keeping fingers crossed your scans wont show anything new. Im sure you are having scanxiety right now waiting for those tests to come back. The waiting sucks!
Glad you are staying busy and doing a lot of things you enjoy with family and friends, I remember how much energy you always had, taking care of your kids, DH and working all through treatments. Im glad your family is loving and supportive. but also glad you are taking time for you, I love the saying "Self Love" Just take care of you.
Wow, thats great suzie is doing good things to help others with BC. Sounds like a wonderful idea. Hope it all goes well for her.
You are in my thoughts and prayers, love and hugs- Debbie
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Hi Titch, hey hows it going. i have not got my mamo results as yet, it has been about a week and haif, 18th of may. i rang B C Nurse yesterday, but she must be busy as not heard back yet, hey i am thinking of you and take care. glad that everything is still good as can be with you and that you are enjoying family time. cold down here in Palmy today, was 7 degrees at 12.30 and now 11dg. i go get under electric blanket when i get cold. yummy. take care.
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Today is August 3rd, and I notice the last post is in May. I pray all is well with you Titch, as I just found you again. I too was a "May Marvel" having been diagnosed late February 2009 with triple neg, and actually had my first chemo the last week of April, but chose to go with you May guys. I hope you are doing okay and am a bit nervous about the space in time since you posted, but I will remain as "up" as you always were during all of our chemo, etc., and keep checking back to read your next post. You are in my heart and prayers.
Hugs,
Linda
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Hi Linda, yes I have been worried about her too, her last log on was in May. We were all a great group of ladies on that thread. Sure hope she is just busy and just hasn't had the time to check inl
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Hi everyone, it has been awhile since I posted big hugs to those who posted. I am still really well, am on chemo and hormone treatment which I am breathing normally again. The chemo doesnt lose my hair and no steroids. Had 3 weeks prior to starting chemo I was kind of stressed. Could not keep any food down felt nausea.... Lost a lot of weight got scared when I lost 6 kg in 4 days. But chemo stopped that and I regained weight again.
I am still working full time and having a ball with life. Been doing lots of activities with my family and friends. Been in comedy show audiences, been to river dance performance, been away for luxury weekend retreats, and just having a lot of fun.
I am organising a big event for kids (and grand kids) who's parents (grandparents) are terminal... Where I have called in friends and family to help. I got v8 car race drivers, v8 stimulators, stuntmen, bouncy castle etc organised. I am so excited about it really and making a lot of kids happy, when they are going thru a lot.
There is sadness today I lost one of my friends Jenny Williams a kiwi with ibc on Tuesday. I saw her hours before she died and she was coherent and well even though she was sick. Today is her funeral so I am going. But otherwise life is pretty good. I must remember to pop in. Big hugs. -
Titch,
You are still the amazing woman I met three and a half years ago! So wonderful to read your post and am so happy to hear you regained the lost weight and are breathing better. I wish you a gentle journey with the chemo.
YOur busy schedule sounds wonderful and so very, very thoughtful of you to do what you are doing - as I said above - a truly amazing woman. Wish you weren't so far away........So sorry to hear your sad news. I hate it with a passion when we lose another wonderful sister to this disease. So very, very sad. Will there ever be an end to the loss that goes hand in hand with this beast.
And a shout out to you too, Debbie - so glad to be back in touch. Don't want to lose touch again!
Wishing everyone a serene and good weekend,
Linda
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Titch, you are truely inspiring. you are living your life to your full potential and that is very awsome, very sorry about yr friend. it is sad when we loose somebody with this disease, let alone any cancer. i hope you will have a very succcessful event for the kids. what a great time they will have, and a busy time for you. GO GIRL>
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