Last physio

Wow, I am amazed and humbled by the number of people who have looked at this since I first opened it up less than a week ago. The feedback I have had from friends and friends of my daughters has been so positive. Thank you... Quite a number of those have been from overseas i.e. England, Ireland,  USA, Canada, Greece, Spain, Taiwan and of course our neighbours across the ditch, Australia. It doesn't really matter where you live, we are all susceptible to that dreaded breast cancer. I would assume that treatments are the same? I know the fears would be...

I went for my last physio appointment Monday after work. I had been given three subsidised sessions through Pinc and Steel who work on rehabilitation for those with cancer so I am very grateful. She worked on my shoulders and back as I have limited movement in both my arms but especially the right one. I had 33 lymph nodes taken out from under that arm pit (only 3 were positive for cancer, but guess it only takes one for the cancer to slip through) but I think it has more to do with the scar tissue after my bilateral mastectomies and my back has been aching constantly since my infusion on Wednesday. The physio has given me some exercises to do to get the movement back in my arms and also to stretch my back out. You can only get out of it what you put into it.

I ended up leaving work at 2.45pm yesterday. I was exhausted. To be honest I had been struggling for the last couple of days but I am so determined to stay at work for the whole day. I was off work for five months when originally it was supposed to only be for a month, and I really dislike taking time off work, but I have to work hard to remind myself my life is different now. I think the zometa infusion takes a lot out of me, but I hope as each month goes by, these effects will lessen. I ended up crashing out to sleep for two and a half hours! But then I couldn't go to sleep last night, talk about a vicious cycle.

Never mind, it is a new day, the sky is blue and I feel great (apart from a sore back!)

Life is precious, lets remember that...I think we can get caught up in the minor crap that really doesn't mean a whole lot.

Take care...

31/8/16  - 7.07am

Educating is so important

Thank you to everyone who has supported my decision to start this blog. I initially thought about it a number of months ago, as I had lots of anger, frustration and disappointment building up inside of me. This would be a way of alleviating those feelings without having to constantly shove it down the throats of friends and family on Facebook.

I was filled with fear at the thought of opening myself up so widely for people to see. It didn't matter if those people were my friends or my family or if they were strangers to me. I had been online and read a number of blogs by other women and I thought it was a good way of keeping people updated, as well as an online diary for myself and a legacy for my daughters. Something they could read when they felt they wanted to, even though they live this journey with me every day. Even those closest to me aren't able to read what is in my mind. At first I started writing this blog without telling anyone but then I thought if those other women could open themselves up to tell their story, then so could I.

What really pushed me was when I was at the BC support group meeting last week, there was a young lady who came to talk to us about her experience. She was 27 when first diagnosed, doing her OE, being in London when diagnosis was made. She is now in her early 30's and since coming back to NZ, has been working tirelessly to reach out to young women, starting in high schools to educate them about breast cancer. I was so struck by her determination and passion, and then I thought of my own daughters who are aged 20 and 17 and I thought she is so right. She has managed to get in to 30 or so schools and speak with over 3,000 young ladies. So inspirational! If I can reach out and touch one person, it will all be worth it.

What people need to realise is that BREAST CANCER KILLS!!!!!! That is a fact...but it doesn't have to be the outcome if people were to become more aware.

We need to educate all women, but we especially need to start educating our young women. If they grow up knowing about breast cancer and learning what the symptoms are and how to self-examine themselves, surely the devastating numbers we have can only decrease. Approximately 3,000 kiwi women (and 20 kiwi men) are diagnosed each year and over 600 will die from it each year. These are phenomenal numbers, it is almost an epidemic. It is such a prevalent disease, almost everyone is touched by this terrible disease in one way or another.

My own mother had breast cancer when I was in my 20's - but it wasn't enough to alert me. I knew I had a lump in my right breast. It was there for months and I did nothing about it. I assumed it had something to do with menopause. Breast cancer did not remotely even occur to me. I am filled with self loathing every time I think about it. How could I have been so stupid...its too late to change my story now but please don't let the same thing happen to you.

I want this blog to be about my living with cancer, not dying of cancer. I want it to inspire other women to be vigilant about their health. How wonderful would it be if each of you turned around to talk to five other women about the risks of breast cancer and they can turn around and speak to another five women and then they talk to another five women each and so on. It would be like a human education chain.

Work is holding a pink and blue ribbon breakfast in October (blue ribbon for prostate cancer) and I have decided to be a speaker. I was so shocked when I was diagnosed and devastated when we discovered it had spread. Now I want to use that shock and devastation to help others.

For now, my health is good and so is life.

27/8/16 - 1.00pm

The day after...

It is the day after my second infusion and I have stayed home from work. Last night I was gloating thinking I had got away scot free with the side efects but was awoken early this morning with throbbing feet, aching back and feeling nauseous. Nowhere near as bad as the first time, but I struggled with myself wondering if I could go to work and get through the day. I find it really hard taking time away from work for appointments and 'this'.  However, sometimes I have to remember to be kind to myself and to my body.

It is now almost 2.00pm and the nausea has pret much subsided. Actually maybe it hasn't...someone is cooking something and the smell is making its way up to my room and I am undecided about whether I want to put my head out the window for some fresh air.

My back is still aching as well, quite considerably. I am sure by my next infusion in another 27 days, the side effects will be bearable.

I am happy to report that my mate who was diagnosed with cancer the other week had an MRI and it has not spread elsewhere. In fact they think they got it all in her recent op and will monitor her every three months. No further treatment at this stage. FRIGGING AWESOME!!!!! I am so, so happy and relieved for her. Wonderful to hear good news😀😀😀

second Zometa infusion

Today was my second Zometa (bone strengthening) infusion. I was really nervous at work before I went. I'm not really sure why, perhaps because I had such an awful reaction the first time. But once I got to the hospital I was fine.

I managed to find a parking spot in the oncology carpark down the hill. But unfortunately I had to walk up the hill to reception to get a strip of paper proving I was an oncology patient, then I had to walk back down to the car to pop it in the windscreen and then had to walk back up the hill for my treatment...talk about bloody exhausted before I had even started!

                                                                                                                                                                             
Anyhow I trudged my way to 'acute oncology' (nothing cute about it! I know...a dumb 'mum' joke as my girls would say) and before long was hooked up to an IV for my second ever zometa infusion. I was in a room with others hooked up to infusions sitting up in armchairs. Having chemo maybe...I don't really know and was too shy to ask.  I then had my usual Zoladec hormone shot, which was so damn painful and I have the bruise to prove it! But if that is all I have to complain about, then I am doing ok.

As I glanced around the room at the other three ladies in the same room as me, I realised we are all in the same club together, or have a common bond. "CANCER" and that none of us look like we have a serious and deadly disease in our bodies. That always shocks me. Even now I think that people with cancer should look sick and have no hair. Strange how we perceive things in our minds.

'acute' oncology

Zometa infusion no. 2.

  

A day at home colouring in

My back is aching as well as my right pelvic area so I have decided a day at home tucked up in bed colouring in, is the tonic I need today before starting another week of work.

40 hours, it can be tough going, especially when my alarm goes off at 5.30am 😞

Pink ribbon tattoo - a show of support

An amazing show of support from my sister and her 21 year old daughter...

They both got pink ribbon tattooes...not just for me but for all their loved ones whose lives have been touched by breast cancer.

Amazing...xxxx

Quiet days

Quiet days at the moment - not too much happening. Physio appointment on Tuesday morning. I was given three subsidised physio sessions through Pinc & Steel. They help with rehabilitation for cancer patients, and so this will be my last one. I may keep going for myself as I have limited movement in both of my shoulders especially the one where I had the 33 lymph nodes taken out. Sometimes I go to throw a small blanket around my shoulders and I feel a ping. Or I may stretch up to a high cupboard and have to pull back again as it hurts and just recently I have a pain in my groin region, on the side where the cancer is in my thigh. I don't know why this happens, but it is definitely since the cancer diagnosis. The groin especially is a nuisance, as I find it tough getting in and out of the car. My back has been aching a wee bit over the last few days now that I think about it. I was putting some bits and pieces away at work on Thursday and it started after that. Last night at my cousins place, I was washing the dishes and same thing. But then again, the cancer is in four of my vertrebrae and in my lower back bone. Such a drag, nothing too major, not even really anything to whinge about when you think about what some people have to put up with.

                                    Ember lying in bed with me on a chilly Sunday morning

I have been feeling so much better over the last few weeks. Once I got over the effects of my first Zometa infusion (bone strengthening med) I feel like I am slowly getting back to myself. I am managing to stay at work all day, although at times I get tired, but manage to stick it out. I guess if I was completely exhausted, I know to go home. By the time I get home from work, I am pretty tired. But its the weekends where I have found the difference. Since starting back at work after a five month absence, a double mastectomy and five surgeries in a three month period, I finally feel like I am able to get out and about. I have two people who I find is really important to be with right now. They are people who I owe so much to, and so I find it easy to get up and spend time with them.

My cousins wife died in March. She had metastatic breast cancer and had battled breast cancer for over 20 years. These lovely people have done so much for my sister and I, and our families since our dad died in 1995 and so now it is my turn to be there for my cousin. His wife was told by her oncologist that they were unable to do anything further for her and so over a period of three weeks, she slipped away from us. I remember her saying to me "gosh Tania, I hope this doesn't happen to you". She was so fed up and was completely limited on what she could do, and had to rely on her daughter and my cousin to do almost everything for her. It was hard watching her leave us bit by bit. Not only because she had been in my life for as long as I can remember, but I would think to myself "is this how I am going to die?" It can be quite confronting...and then you think about the loved ones you will leave behind. I had to try and shake those thoughts out of my head. I still have so much life to live, I can't spend it thinking about my dying moments. Those will come soon enough whether it be in a years time or 20 years time. So my cousin is the first person I need to be with. I try to go and see him every weekend.

The second person is my mate. She comes with me to my oncology appointments and writes notes and then explains them to me in plain english (she has a nursing background so understands the medical lingo). My lovely mate has recently been diagnosed with cancer, stage 1a but they think it has escaped. An MRI has been done, so we are currently waiting on an update. She is also recovering feom major surgery (which is how they found the cancer) and so I try to see her each weekend and give her an escape from home for a couple of hours going out for brunch or afternoon tea. I need it just as much...

I have been so lucky in my journey so far. I have had wonderful support from lots of people, and so it feels nice to be able to give something back. With my mate, we talk about cancer and how scary it is and are both quite philosophical. I guess it is easy to be that when you don't actually have the diagnosis of death right upon your door. But I am scared for us both. I am worried and scared about what they will find in her MRI. But yet I want to be there with her every step of the way. Every time I ache, I am scared my cancer has suddenly got worse and so has my diagnosis. Sometimes when I think about the both of us, I start to feel like I want to puke my guts out or that I have a huge rock in the pit of my stomach weighing me down.

All I know is that there is always someone a lot worse off than yourself .

     

Quote - "don't count the days"

I just saw this quote and had to share it...

Pink Ribbon Breakfast with the Lions

This morning my beautiful family and I attended a Pink Ribbon breakfast which was put on by the Lions Club that I belong to. It is only a very small club and I have not ben attending any meetings since I had my mastectomies. But because this is so special to my heart obviously I had to go, and there was no hesitation from my daughters and my 'third' child (young daughters boyfriend) to come with me. It was lovely to see the other club members, partners and fellow Lions. An invocation was given which broughht tears to my eyes as she referred to the fact that a couple of people within that room and their loved ones had been touched by this disease. It was an emotional and humbling moment...and I must admit I am such a sop...

We had 62 people attend the breakfast and at the conclusion of it, they announced the amount of $1200 had been raised. As you can imagine, this brought more tears to my eyes! What an outstanding effort for such a small club! AWESOME...WONDERFUL...

Special guest...George the cat - who actually ended up getting chucked outside. But my lot (we are all cat lovers) managed to have lots of cuddles with him before he was extradicted outside. Actually, we had to stop him from climbing on the tables so probably just as well he 'left the room'

Sweet Louise support group

I attended my first 'metastatic breast cancer support group' meeting yesterday morning. Otherwise known as 'Sweet Louise'. Sweet Louise was inspired by the life of a young woman by the name of Louise Perkins who was first diagnosed with breast cancer at 27 and diagnosed with secondary breast cancer at 29.  A small group of people including Louise's husband set up Sweet Louise to help those with secondary cancer to support them but also to make people more aware of secondary cancer. They celebrate ten years this year...amazing! I for one am very grateful they are there.

There were about 12 women at yesterdays meeting of all ages and the thing that struck me was that by looking at them, you would never know that they have this awful disease within their bodies. I don't know about you but up to now I have always associated people with cancer as looking frail and ill. It was so interesting to hear their stories and everyone had a different story to tell. One woman broke down and cried as she told her story. She has just recently found out her breast cancer has come back. I wanted to break down and sob with her but I don't like crying in front of people and so I held it back with a few tears escaping. I wanted to go and give her a big hug but not everyone is comfortable with that. I left that meeting feeling validated, that the feelings I have been having are shared by others. I felt so invigorated and look forward to going back to the next one. They are every 6 to 8 weeks which is quite a long time but perhaps if they were too often, it would become a chore going.

I find myself watching people now, wondering if they have some kind of health condition that you cannot see. We often see people with physical disabilities but often don't make allowances for those that you cannot see and can be quick to judge. I too am not immune to it especially when it comes to kids. If I hear a kid screaming, I roll my eyes and think thank goodness thats not my kid and if it had been, they would get a good slap (yeah right! - NOT!). And then I think what if that child has ADHD or is autistic...you just never know.  Who are we to judge...

I do know though, that this diagnosis of secondary cancer has changed me. I have less tolerance towards people who bitch and moan about the stupidest things. I have become a little bit more serious...My temper can sometimes rise a lot quicker than before, but I try so hard to keep a lid on it. This is not anyone's fault and so I don't want to take it out on them. Its also not my fault...it just is. It is my 'new' normal. I hope in time I will relax a bit more, as it is all still so new to me and I can be so paranoid about the smallest things.

Metastatic breast cancer support group

its 7.21am and I have my first metastatic breast cancer support group meeting later this morning and I am feeling quite nervous. Not quite sure what to expect.

I will update on how it went later tonight once home from work, had dinner etc.

Where does this cancer crap end...

Honestly, I have to ask myself, where does this cancer crap end? We are all touched in some way by cancer, whether it be breast cancer or some other kind.

My very close friend has been coming with me to take notes at my oncologist appointments.  She has a nursing background, and has a no nonsense attitude which I appreciate. At my last appointment only last week, she dragged herself along with me after having just had major surgery less than two weeks previously. I won't go into specifics as her story is not my story to tell, but I will tell you, she has just been diagnosed with cancer!!!  Can you bloody believe it???  We were talking on the phone last night and having a bit of a laugh, and probably being inappropriate with our joking but for cripes sake...if you don't laugh, you'll cry and while it is good to cry sometimes, other times are right for laughing.  Perked us both up anyhow.  So she is now set for lots of tests to find out what happens next, and I will be there with her every step of the way.

Tomorrow morning I will be attending my first metastatic breast cancer support group meeting, so have taken a half day annual leave day.  I can't wait.  It will be interesting to see the ages of everyone, the stages they are at, and if we all suffer the same fears.

Beautiful winter evening

Our big guy "Storm" whose favourite spot is right beside the fireplace

Couldn't resist taking this photo...the sky full of orange and yellow...beautiful

Zometa - Zoladronic Acid

Visits to see the oncologist are now three monthly. My latest one was on Wednesday just gone. Finally got in an hour passed my appointment time... He had me a bit worried as he didn't seem too enthusiastic and asked if I was in pain. I had had a bone scan and CT scan leading up to this appointment, so I was eagar to receive the results. It seemed that I am respomding well to the medication I am on (exemestane daily and a Zoladex hormone injection every 28 days plus a vitamin D tablet every 28 days) and it appears I have lots of 'cool' spots which apparently is a good thing. But they were a bit confused because it looked like I had more lesions in the bone but thought a plausible reason for this was that the bone is trying to heal itself. My calcium levels are slightly elevated which they don't understand so have been told no more vitamin D for me....something has also shown up on my lung but they don't believe it is related but will investigate it further. Hope it won't be an MRI. I hated the previous one and had to work really hard to keep myself calm and think nice thoughts and think of my beautiful family. But it was a damn freaky experience. How claustrophobic people handle it, I honestly don't know - they deserve a medal afterwards.

Anyhow, it was decided I should start my bone strengthening infusion that day. Off we marched to the ward, dragging my poor buddy who had just recently had surgery but whom was determined she was coming along (she is my note taker). They proceded to try and find a vein to hook the infusion into, and hey presto! Off we went! The infusion itself took 15 minutes followed by a flush through of saline for a further 7 minutes and then once they dismantled me from the IV, we were able to go. You may experience flu like symptoms I had been told...by 11.00pm that night, I had a throbbing headache, I was aching all over, I felt extremely sick and was freezing cold. I managed to stumble up to get some paracetamol but I got bugger all sleep that night, waking again at 3.00am with exactly the same symptoms so had to stay home. It continued all of Thursday but managed to sleep on and off during the day and still felt a bit crappy Friday morning so decided to stay home from work again. I did eventually come right about lunchtime thank goodness. 

I think it is still taking a bit out of me. I am aching quite a bit when I wasn't before, and very tired and appetite not up to its usual standard. (That won't last long I'm sure). I was in bed asleep last night by 7.00pm until 5.00am this morning. Absolutely unheard of for me!

Infusions will now take place up at Akld Hospital every 28 days. They have decided to tie in my hormone injection on the same day, which is more convenient. The symptoms are supposed to get better each time as well, such a relief.  Fingers crossed...