Newby
Hi everyone. I'm new here. My name is Jo. I'm 35, live in Melbourne and work at the zoo. I'm separated from my husband and we're getting a divorce this year.
I found a lump in my left breast in December, had an ultrasound on the 29th, followed by FNA on the 6th Jan and was diagnosed with early breast cancer on the 10th Jan. My lumpectomy was on the 13th (yes it was a Friday!), and I started chemo on the 27th.
The first week of chemo was very rough (although the day after the treatment I was hyperactive!). I have decided to cut back my job to part time, which is realistic for them but financially puts me in a very difficult situation.
I have a theory that chemo brain is caused not by the chemo, but by the overload of information about the cancer and treatment and also by the huge amount of paperwork and financial spaghetti you have to wade through!
My family, friends and work have been so kind and generous and supportive. It breaks my heart to think that there are women out there who are not as fortunate as me to have the kind of cancer I have (the best kind) and to have my support circle. One friend even offered to throw a fundraiser to help me pay my bills. Of course I said no thank you, but it was quite humbling to be on the receiving end of such kindness.
That's all I guess. I just wanted to dip my toe here. This is a bizarre situation to be in, especially after an extremely rough and emotionally gruelling year in 2011. We had two traumatic deaths in my family, the worst happening in September, and I am still making my way through that deep grief, only to find myself here. I don't feel like I've dealt with the emotions brought up by my diagnosis and treatment. I don't know if I'm stuck, or if I've shut down. Everyone thinks I'm dealing beautifully, as I have such a sense of humour and ability to laugh and make cancer jokes which put myself and people around me at ease. But on the flipside, when I'm alone I am numb and in a constant state of shock. Maybe it works by shutting myself down as a defence mechanism, because if I let myself feel everything I'll explode. That wouldn't be pretty.
I'm frustrated because I started really working out and going for runs last year, only to be stopped in my tracks by this. All I want to do now is run, but of course I can't.
I wonder how many times I've used the word "I" in this post. I know it's not very well written, but it's just spewing out of me at this rate, so I apologise to anyone who is reading this!
Comments
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Love & Hugs Jo xoox
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Love & Hugs Jo xoox
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We never know what life is going to throw at us. Like Samantha I acknowledge that there are parts of my old life I will never recover, but from my point of view it is a very positive one! I've decide I'll never wear a bra again, no more arriving at the front door and as soon as you step inside reaching behind you to undo your bra! No reconstruction either, don't care if I'm lopsided.
You'll find that the Dexamethasone they give you to prevent fluid retention and nausea around your chemo days will make you hyper.
At this stage you need to take time for yourself to heal and to grieve. There is a limit to the time you can be upbeat in public. Gather your friends around you and give yourself permission to fall in a heap. Many on this forum have consulted psychologists and/or attended support group meetings to help them through. This sort of help is available, just ask your treatment team.
I found that I only read the information about what I was going through at the moment, but got better and more specific advice from questions I asked of my treatment team - breast care nurse, Medical Oncologist, Radiation Oncologist, Breast Surgeon, Plastic Surgeon, Physio etc.
I made the decision to be treated as a Private Patient in a Public Hospital because of the committment to this Multi-Discipline Team approach and have had an absolutely dream run through the system.
If you still need to have Radiotherapy ask to be treated at a public hospital if at all possible as there is a substantial out of pocket expense if you are treated at a private radiotherapy centre.
With love
Joy K
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We never know what life is going to throw at us. Like Samantha I acknowledge that there are parts of my old life I will never recover, but from my point of view it is a very positive one! I've decide I'll never wear a bra again, no more arriving at the front door and as soon as you step inside reaching behind you to undo your bra! No reconstruction either, don't care if I'm lopsided.
You'll find that the Dexamethasone they give you to prevent fluid retention and nausea around your chemo days will make you hyper.
At this stage you need to take time for yourself to heal and to grieve. There is a limit to the time you can be upbeat in public. Gather your friends around you and give yourself permission to fall in a heap. Many on this forum have consulted psychologists and/or attended support group meetings to help them through. This sort of help is available, just ask your treatment team.
I found that I only read the information about what I was going through at the moment, but got better and more specific advice from questions I asked of my treatment team - breast care nurse, Medical Oncologist, Radiation Oncologist, Breast Surgeon, Plastic Surgeon, Physio etc.
I made the decision to be treated as a Private Patient in a Public Hospital because of the committment to this Multi-Discipline Team approach and have had an absolutely dream run through the system.
If you still need to have Radiotherapy ask to be treated at a public hospital if at all possible as there is a substantial out of pocket expense if you are treated at a private radiotherapy centre.
With love
Joy K
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You are having a really rough trot - death in the family,impending divorce and breast cancer AND only 35. That is probably too much for anyone to cope with. You poor darl, no wonder you are numb.The trouble with this bc journey is that you never quite know when you'll be brave and when you'll fall in a heap. Often it's the little things that can make you come unstuck.You do need 1 or 2 people to be close and honest with but if humour helps you deal with others then that's fine.Even coming on this site will be helpful cos you can vent your feelings /ask questions and there is always someone to chat with. You'll get lots of info and support here and won't feel so alone.
Tonya xx
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You are having a really rough trot - death in the family,impending divorce and breast cancer AND only 35. That is probably too much for anyone to cope with. You poor darl, no wonder you are numb.The trouble with this bc journey is that you never quite know when you'll be brave and when you'll fall in a heap. Often it's the little things that can make you come unstuck.You do need 1 or 2 people to be close and honest with but if humour helps you deal with others then that's fine.Even coming on this site will be helpful cos you can vent your feelings /ask questions and there is always someone to chat with. You'll get lots of info and support here and won't feel so alone.
Tonya xx
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Thanks everyone. It's nice to feel like I can just be myself in the moment without having to put a face on. I have heard this journey likened to a roller coaster. I feel like it's more like a luge. No safety bar, completely vulnerable and not fun!
I shaved my head and now awaiting the hair loss. I keep having dreams about losing the hair, most recently this morning. I dreamed I woke up and walked into the bathroom and there was a bare patch above my forehead. Even though I've done the shave (which was both traumatic and empowering) I'm still anticipating the hair loss with dread. I keep tugging at the hair but it's still stuck fast, and I know that on TC chemo, people seem to lose it on day 14. That's this Friday. I'm glad I shaved it off first, so it's not such a shock when it happens.
I went to work yesterday and today and unfortunately it seems as though the word hasn't gotten out there yet and a lot of people don't know, so I'm having to break the news yet again. I'm so over it. I feel like wearing a t-shirt that says "I've got breast cancer" so that people aren't put on the spot and have that weird reaction of shock and pity mixed together. Someone asked me how my holiday was, as I've been off for about a month. It was horrible to say "holiday? No. I was diagnosed with breast cancer". Even now I feel like scrubbing the memory of that conversation from my brain.
I'm at a complete stall. My heart aches for the loss of my aunt. She was cycling whilst on holiday in QLD and was involved in a hit and run. Even though this time in my life is traumatic and upsetting, it does not compare to that event. I miss her so terribly. She would have been the perfect person to hold my hand through this. My mother is my support person, and I love her very much and appreciate everything she is doing for me, but my aunty was a trained nurse, down to earth, centred and calm.
Anyway, that's my whinge for today. Yesterday I had such a good day. I had lots of energy and went to work for a whole 5 hours! Today I only managed 3. I've got a Zoladex implant during chemo and today I had a breakthrough bleed, which explains my pity party I guess. Thanks for listening/reading.
Oh, I made a video of the before and after hair. Feel free to have a look http://www.youtube.com/watch?v=hI4ZbdTDjNM
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Hi Joey, Great video, i had about the same length hair and had mine cut off today, not shaved yet, but very short. I haven't started chemo yet, but getting me ready for it. What a journey! Sending you positive thoughts. Hugs, Donna
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What gorgeous hair - that will make a great wig for someone.
Go ahead and whinge - your life is going through a hard patch & if you can't whinge now when can you?
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Welcome.. I hope like I have you find amazing support on this site. There is always a welcoming hand reaching out to walk the journey with you.
You have had a terribly tough 2011. I understand completely the overload your mind suffers from your bc diagnosis. I try not to think about the financial impact for my family at the moment. I am a single mum of 3. I am a preschool teacher and have had to take leave due to the high infection risk. My oncologist has said no work or visits to work till the end of radiation at least. I had my second chemo last Friday.I have 15 more to go then radiation. My work have been extremely generous and supportive. I am currently waiting on a decision from my income continuance claim so fingers crossed. I try not to worry about the $$ but it's hard not to.
As for the chemo... My first was on Friday 13th. The dex had me awake for 3 days straight with hot flushes, racing heart, chills, insomnia, and an incredible appetite. Day 4 I fell in a heap... On the shower floor exhausted. Day 5 I felt so much better.
Second chemo last Friday... Oncologist halved the dex through the drip... Took some short acting sleeping tabs and slept 5 hours. Shocking nausea and refluxagain.. Worse than first cycle... Insomnia without sleeping tablets... Why I'm writing this at 2.45 am
. But i am finding it less scary than I had imagined. Still getting thrown surprises like getting breathless from shortest walk.
I am the first to admit I was petrified if chemo... Still am if I'm honest. Scared me more than my bilateral mastectomy and then bilateral clearance. 2 chemos down ... 15 to go... Each day is a day closer to the end of treatment.
Take care Jo. Reach out.. Listen to your body and know we do understand
Mel xxx0 -
Welcome.. I hope like I have you find amazing support on this site. There is always a welcoming hand reaching out to walk the journey with you.
You have had a terribly tough 2011. I understand completely the overload your mind suffers from your bc diagnosis. I try not to think about the financial impact for my family at the moment. I am a single mum of 3. I am a preschool teacher and have had to take leave due to the high infection risk. My oncologist has said no work or visits to work till the end of radiation at least. I had my second chemo last Friday.I have 15 more to go then radiation. My work have been extremely generous and supportive. I am currently waiting on a decision from my income continuance claim so fingers crossed. I try not to worry about the $$ but it's hard not to.
As for the chemo... My first was on Friday 13th. The dex had me awake for 3 days straight with hot flushes, racing heart, chills, insomnia, and an incredible appetite. Day 4 I fell in a heap... On the shower floor exhausted. Day 5 I felt so much better.
Second chemo last Friday... Oncologist halved the dex through the drip... Took some short acting sleeping tabs and slept 5 hours. Shocking nausea and refluxagain.. Worse than first cycle... Insomnia without sleeping tablets... Why I'm writing this at 2.45 am. But i am finding it less scary than I had imagined. Still getting thrown surprises like getting breathless from shortest walk.
I am the first to admit I was petrified if chemo... Still am if I'm honest. Scared me more than my bilateral mastectomy and then bilateral clearance. 2 chemos down ... 15 to go... Each day is a day closer to the end of treatment.
Take care Jo. Reach out.. Listen to your body and know we do understand
Mel xxx0 -
Hi Joey love, I have just watched your video. What a good thing to do. You look wonderful with the shaved head. Embrace the freedom from caring for long hair. It will grow back it you want it to. Maybe slow but whatever!!! It has taken me 8 months to need a haircut. I too had long hair for a very long time (probably as long as you are old) I was surprised at how "easy" it was to lose it. My hair came back so curly. I want to grow it into a bob so had it permanently straightened last week. At least now I have hair that "hangs down" instead of "out". You will get through this. It is good to know that you were fit and strong before your diagnosis. I too was very fit prior to bc. It is difficult being "idle" during treatment but just "go with the flow" and before you know it you will be able to "find some of your old normal and get some new normal" back into your life. I have now started back at personal training. I waited until my body told me it was ready. Very important to listen to your body. XLeonie
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Hi Joey,
It sounds like you have had some great support so far, not only from your family but those connected with the online network! Thank you for sharing your before and after video - you definately showed courage, strength and seemed very empowered! :-)
If you want some more information there are some great posts on hair loss within the network - http://www.bcna.org.au/search/node/Hair loss - Have a look as you might find it useful.
Cheers
Daina0 -
Hi Mel,
I think I'm doing ok. I've lost about 1/2 my hair and very short on energy. I've been to work a little bit but now applying for sickness benefits. Emotionally I'm numb. Physically I'm getting a lot of head aches, jaw and ear aches and I have very little motivation right now. My 2nd chemo is on Friday and I'm dreading it. I know I sound like I'm throwing myself a massive pity party right now. I was extremely optimistic at the start of this journey, but I think that was to spare the people in my life. Now that I'm in the middle of chemo it's like it's taking its toll on my emotional and mental state. I wish I could laugh and smile genuinely, and I know I'm avoiding being around people because I don't want to have to put on an act either.
In short, I'm all over the place...
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Hi Jo,
You can tell I still have chemo brain!! Sorry I called you Mel??? How did the second round go?
Kelly.
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