Cancer You Picked the WRONG Chick!

Well with only 7 weeks left of 2016, Rick and I can finally breath, finally plan and finally enjoy what's left of the year. Why? Because I am officially done!! No more surgeries, no more treatment, I am done, done done.

Our visit to my lovely surgeon today, heralded the best news ever. I went in expecting to be told, that those pesky nodes in the armpit that showed up in the last two scans, would be removed. But no, after the team meeting with the local specialists, and a phone call to one spectacular Professor in Brisbane, the decision has been made that I am to be treated as a person who no longer has cancer in her body, and I move to the next phase of watching. I will be seeing my surgeon and my oncologist every 6 months, which actually means I'll see someone every three months. At each visit I will have a thorough examination, I will have mammograms and ultrasounds every 6 months with the occasional CT scan thrown into the mix. They and I will be vigilant of any symptoms and my health. My goal is to drop another 5 kilos to get me to about 66kg and increase my exercise. My diet is pretty good so I'm heading in the right direction.

The word "cure" today was used, but I'm not yet comfortable to hear or accept that yet. I know that my particular cancer has a higher risk than other breast cancers, or recurrence in the first 3 years. So I'm going to go with remission for now. Having said that, I will do my utmost, to put this now behind me. I will spend the next 8 weeks working on improving my health and healing from the chemo and radiation and getting ready to get back to work in January.

This year has been long and hard for our family, but there are also families for whom it's been just as difficult or traumatic and worse. We are lucky, we can put this behind us and move forward. Others have not been so fortunate, and I am so grateful for the second chance I've been given.

We've also received so much love and support from so many people. Lots of lovely offers have been made, and while most haven't been taken up, just the gesture meant the world to us. Rick and I are so not used to being people in need of help, we are usually ones to help out. So the role reversal has been challenging, and humbling. But the love shown to us, and our families, has been overwhelming and just beautiful and we thank you from the bottom of our hearts.

I will still pop in here to say Hi and keep you all up to date after each visit. Thank you for following my "adventure" and thank you for the love xxx

Are We There Yet???

Well I had hoped to be able to let you all know by now, that all treatment is finished, and now I'm just taking some time to heal my body, find my new normal (pfffft as if I'll ever be normal) and find some real enjoyment in the last part of this year before I return to work in January. Well as we know, this road is never straight let alone straight forward. So here's an update thus far.

My last was during the last week of radiation therapy. That was fun, the dial was turned up and I was given what they call a "boost" week. So the highest radiation they can give the body to the neck tumour site, the axilla (remember I hadn't had the surgery in that area that's usually done, due to it spreading to the neck and therefore being rushed into chemo treatment) and to the tumour site to the neck. My fatigue increased, and I experienced some breakdown in the skin to the neck and the top of the breast area, but I really feel I got off lightly compared to many who go through this. I also had my fabulous mask to wear to lock me into place for the treatment to the neck. Thankfully I discovered I wasn't too claustrophobic and handled that okay as well.

Following the radiation, I got to put my handprint on the radiation clinic wall to signify the end of treatment. My mum had treatment there 12 months ago for skin cancer, and I got to squeeze my little hand in with hers. That meant a lot to me.

The next week I had my bone scan and full body CT as well, and the results came back really good with no real sign of cancer left. So we're all pretty happy with that news. But as always there's always a "but"  I am waiting on a decision from the multiple disciplinary team as to whether I have more surgery to the armpit to remove the nodes that showed up as enlarged in my scan just prior to starting radiation treatment.

It's been explained to me this way. The normal process for my breast cancer treatment, following the discovery of the cancer in the sentinel nodes (remember they are the fist line of defence and if the cancer wasn't there, it wasn't further in the body) was for mastectomy and full clearance of the nodes in the armpit, then chemo and radiation to mop up any leftover cancer cells. But because I'm so freaking special, and the cancer was found in the node in the neck, I had to have chemo to stop the spread of the disease. So now they need to go back and consider whether the correct procedure will be to watch and observe these small nodes in my armpit, or is it safer to just remove them, and that way the can look at them and determine if there are any cancer cells in them. 

I was never happy with the idea of this, I'd been warned of the high risk of lymphedema (I've added a link here so you can read all about it, just click on the link). However my surgeon feels that with the new way of removal etc, my risk will be minimal, as long as I'm careful. Either way, if they decide that's the best course of action for me, and that means the risk of recurrence is reduced, then I'll take it thanks.

I have an appointment to see him again on Monday. By then they'll have had their specialists team meeting and he'll have spoken with Professor Ung in Brisbane who has been involved in my case all the way through. If it's surgery, I'm classed category one which is surgery within 30 days, so I am hoping to be still on track to return to work in January :) YAY Happy Days!!

In the meantime, I have had other lovely days to celebrate. Our beautiful Lilly bug turned one the day I finished treatment. These grandbabies of ours have given us such light to an otherwise crappy year. I know I complained long and loud when the kids decided that they'd both have babies together and I'd become a nana twice 8 weeks apart, but the cuddles and kisses (and videos when they or I have been too unwell to be round them) has kept me going this year.

Also we had our Girls Night In and I got to talk to all the lovely ladies there about my journey. Firstly let me apologise for talking so long. But many of you know me, my family and my friends, and I wanted to to really grasp this journey. We've all attended these nights, and listened to these statistics and talks for years now, yet I was completely blindsided by this. I wanted it to be personal so that you would really take in the information that could help you or your friend who might find themselves walking this walk. I promise to anyone else if I get to speak to your group, I will keep it much shorter lol.  

The great news is that the weekend raised just over $1000 so great job girls!!!

So that's it for now, stay tuned folks and as soon as I get more news on Monday, I'll let you all know.

Thank you for all the love and support shown to Rick, Kiah Michael and me, my family and my friends. I'm hoping that we really are nearly at the end of this treatment and all that's to happen is wait out the next 3 years and be cancer free. xxx

Are We There Yet????

Its Wednesday!!!! That means I have 7 days of radiation treatment left!!!! 7 days of filling in my day with stuff till I have to drive down and spend half an hour with my big friendly machine. 7 days and my time is back to being my own. Auspiciously, my last day of treatment coincides with our granddaughter Lilly's 1st birthday! 30 treatments done and dusted.

As usual, I don't do things easily. This last treatment will deliver the highest boost of radiation that they can give me, to the breast and armpit. Then they come in, reposition my arms down by my side, strap my Hannibal Lecter mask on and pin me to the table and give the node in my neck the largest dose as well.

My skin has held up very well considering most people end up with nasty burns, sometimes blistering.  It is tingly like when you first get a sunburn, up until last week, the scar site would ache as would my armpit (those pesky nodes). I now spend longer in the bathroom applying 4 different creams to the area to avoid the nasty burning issues, and come out looking like I've been plastered with zinc cream. But worth the effort if I can avoid the worst of it.

HAIR HAIR EVERYWHERE!!!   I have now got a full coverage of hair about 0.5 cm long along with some fine wispy baby fluff about 1.5cm. The male pattern baldness area has been the last to cover in, but I'm ready I think, that by the start of next week, I'll walk down the street without a hat or scarf.... I am SOOOOOO over hats and scarves. The wig was never my thing and now a hat just makes my head itch.  But the down side????? I have to shave my legs again and I have discovered that those bloody hormonal hairs are back!!! Son of a b!tch chemo... could you not have kept those! I still don't have armpit hair, I do have lovely dark eyebrows again, I don't have nasal hair, I do have my lady hairs, but for the love of god, could you not have kept the odd chin and moustache hair.... sigh.....

So before we rejoice and think I'm back to normal, unfortunately we still have some side effects from the lovely chemo, and also radiation fatigue has well and truly kicked in. With the chemo, my nails are still trying to repair themselves and 10 weeks post chemo one nail has decided to turn blackish. Toenails are still a mess, and I'm still not sure I won't lose one of the big ones. My legs have finally stopped aching and I'm starting to walk more. Standing is still an issue, so bum on chair happens a fair bit. My tastebuds while improved, still leave me with an unpleasant aftertaste half to and hour later, even to the point of nausea. I can't stand the smell of bread cooking!!???  Somethings I still can't bear to go near. Cups of tea are a right off, I usually only drink 1/3 of a cup of coffee, my sweet tooth has taken a beating, biscuits are terrible. Chocolate and sweets, nope. All of these really are a good thing, as I still need to lose more weight for the doctors to be happy for my long term health (despite losing about 8 kilos all up so far). But my brain still wants a sweet after a meal. I guess I have to get used to being a savoury tooth now... after 50 years of one habit, it's going to take some time to get used to a new one.

The radiation to my neck has left me with a constant sore throat with a golf ball inside making swallowing interesting. The doctor keeps asking if I'd like some painkillers to help, but I told him I just need to learn to put less in my mouth and chew my food properly! He thought that was funny. I just don't want to take any more pills.

I'm working on healing my gut. I've got my probiotics, I'm taking charcoal tablets to help get rid of the toxins, and my lovely boss/gp told me the other day that I'm looking the best I have for a long time. That really made my day.  Now if I could just get through the day without a 2 hour "nap" and stay awake longer than 8.30pm, I'd be happy.  Can't have it all though....... just yet!

Spring has sprung... and so has my hair!!!

Week in, week out, I have at least one dream of a night time, of my hair growing, or having long wavy locks. To say that I'm obsessed about my hair is probably a little bit of an understatement. Like looking at Donald Trumps "hair" I am found regularly in the bathroom, examining my scalp for signs of new sprouts!!!  And it is happening! Even the family checks out the new growth when they see me. We're all eagerly anticipating the arrival of a full head of hair!!!

What is concerning me at the moment although, is the apparent way that its coming back.                 At the  moment, I look as though I'd fit in at the old fellows bowls club! It's all around the back and sides.... and seemingly sparse on the top. As to the colour, there is a lot of grey, but there is also a fair bit of black. I'm watching with different levels of jealousy, the other ladies who are going through this and are "ahead" of me (pun intended) who are now sporting a really cute short pixie cut style of hair. I've decided to embrace the nana side of me when it returns, and jazz it up a bit if they still make Magic Silver Rose. I'll give the greys a bit of a pink tinge. For you young ones, it's what your great (or even great great) grandma's would put in their hair to give them that lovely pink or blue colour. Hence the term "blue rinse set".
 I will avoid a Dame Edna look. I just don't have those glasses anymore :)








So this week I start week 3 of radiation treatment. The skin is bearing up okay so far, with just a bit of tightness and tingling around the decolletage area (again for the men and the young ones, the area of the neck under the chin down to the chest) The is my already sun damaged area, so I'm wondering if that is making things worse. I was advised by the lovely radiation staff to use "Moo Goo Udder Cream" liberally. It's made by a lovely Aussie company from Burleigh Heads. Their products are all natural and they send out samples to a lot of the radiation treatment Doctors, and also donate products from their Dusty Girls range of natural cosmetics, to the Look Good Feel Better workshops. If you spot their products in health shops or some of the pharmacies, please try them out. I'm finding them to be particularly good.

One side effect I didn't enjoy last week was a sore throat that progressed to something akin to a lump in the back of my throat that made swallowing food very difficult and painful. I got to the point of wondering if the next 6 weeks or so would end up seeing me on liquid meal replacements. The upside being that most of these are low calorie, so I would be doing myself a bit of a favour and hopefully losing a few more kilos that the boss/doctor would like to see come off. I need to get my weight down a bit more, to be at my optimal health and fitness and help keep me healthy and well and keep this nasty disease from rearing its ugly head again. Luckily, the lump feeling has eased, but food and I still don't completely get along. The brain is saying eat biscuits, cake, sweet stuff like I used to. But if I give in, the tastebuds revolt about half an hour later I have this awful taste in my mouth, and if I'm lucky enough I'll feel, not exactly nauseous, but just yuk for a while after eating. I guess I have to get used to going from a sweet tooth, to a more savoury palete.


I suspect the fatigue they suggested would kick in, has started to show up. I do get a bit tired by mid afternoon, but I'm not yet willing to admit that it's the radiation.

Today I'm off to have my neck CT Scan so they can map the last week of my treatment. That week will see radiation only to the area of my neck that the cancer spread to. I also get to wear a specially made mask to hold my head and neck in place so that the treatment is very accurate. It will also be a higher dose of radiation, so I can expect more burning to that area. Better stock up on the moo goo.




So for the next 4 weeks, we just spend our days, pottering around the house and waiting on daily appointments. It's an exciting life (insert sarcastic tired tones). But at least it's not chemo!!!!

Radiation has started! And.... before and after chemo.

This week I started my radiation therapy. Compared to chemotherapy, this is a walk in the park. However, it will come with it's own set of challenges, and "compromises" as my very nice Radiation Oncologist puts it. I go every day of the week except Saturday and Sundays for 6 weeks, and all up the whole process takes between 30 - 40 minutes. The staff are just lovely, and spend about 10 minutes or so making sure I'm in exactly the same position each time, apologising for their cold hands as the pull and push me into the right spot. Then they run to what I call their bunker, to avoid the "rays" as the machine moves around me and shoots me with the radiation. 

For now, I have no side effects and in fact, the last couple of days, I've felt the best I have in months. My muscles are all very stiff and sore and I can't believe how inflexible I've become. It's time to drag out the pilates/yoga dvd I was given by the Breast Cancer Network at the beginning of this adventure and try to go from feeling like an 80 year old, back to a youngish 51 year old. If I spend too much time on my feet, my ankles swell so it's a balancing act between doing something and not over doing it. My tastebuds still are out of wack, although some days are better than others. I still tire easily, I have three iffy fingernails that I reckon I'll lose thanks to the chemo. My left hand nails smelt absolutely horrible for a couple of weeks as the nails started to separate from the nail bed. They needed a fair bit of care to get them feeling healthy again. I've lost feeling in the tips of my fingers, and my hands have ached continuously like I am riddled with arthritis. My handwriting looks like a preschoolers', and don't even ask me to open those stupid clip lock bags... it usually ends in tears or me cracking the you know whats and using scissors instead. I'm hoping that given time, these poor hands will get back to what they were. I miss my craft.

The side effects of the radiation to come, will be sunburn to the area (breast, armpit and neck) The breast and neck will both receive a higher dose for a week each, just to be sure that any lurking little cells that may have escaped the clutches of the chemo so I have to be extra vigilant in those areas and keep up the special moisturiser several times a day, and be careful of the sun and hope it doesn't blister, or it doesn't blister too badly. There are risks involved with radiation, and especially when they give you a higher dose. There can be damage to the lung and the heart. I do worry about my ribs and collarbone, so I must remember to ask about that when I speak with Dr Wong (radiation oncologist) next Friday. He touches base with me at the end of each week. 

My CT body scan, and bone scan was completed before I started radiation, and compared with the ones done just before I was to have the mastectomy, but was sent off to chemo instead. In this latest test, they flagged a few nodes in my armpit as being a little enlarged (I think it was) but anyway, they were a little different to the first scan. We had a discussion about that on Friday with Dr Wong and he agreed with my thoughts that they were basically pissed off nodes that had had the cancer through them (the cancer had to get to my neck somehow, and they were the likely pathway) I knew that the cancer was in the armpit (axilla) because the cancer had already involved the sentinel nodes. Remember the original surgery (lumpectomy and sentinel node biopsy) was to remove the original tumour and see if the sentinel nodes were involved. The sentinel nodes are the first line of defence, and if they weren't involved then the cancer couldn't have gone further. Unfortunately I had heavy deposits in three of the nodes so it made sense that it had already spread through to the nodes in my axilla. Thats why they wanted to do the mastectomy and full axilla clearance. But then the neck issue popped up. 

Anyway, I asked the question that given this new CT scan had highlighted the nodes to the axilla as being different to the first scan, if the next scan after radiation still had them concerned, would it be likely that the surgeons would want to remove them. Apparently that could be the case, and the node in the neck. But the surgery to the node in the neck is very tricky, and would likely be done in Brisbane by Professor Ung. He's the fellow who made the final decision to not do the mastectomy and instead send me to chemo when they found the cancer had spread. I'm not keen to have axilla surgery because of the increased risk of lymphoedema (permanent swelling of the affected arm), and voiced my concerns to the good Dr. But we'll wait and see what the final outcome is once radiation is complete, and tests are done. I guess it's just a reminder that I need to keep my mind open to changes in my course during all of this.

What I really want is to just finish my radiation, heal my body and get back to work in January. I want to put 2016 behind me, and get back to whatever normal feels like next year. But I guess what was normal in 2015 is not going to be my normal in 2017. Already I've had to face so many changes and find that inner strength to cope with them. By far the biggest challenge has been in my appearance. I really feel I've aged about 20 years. My loving and patient husband tells me how beautiful I am every single day, and I love him for it, but when you look in the mirror and on a bad day, feel like Uncle Fester from the Addams Family, it's sometimes hard to find the old me in there, let alone, feel beautiful. Makeup is a wonderful thing, and helps me feel more normal, but during chemo, I was often too sick, too tired, too in pain to care and take the time to paint on a face. Then there's the whole "no hair" issue. While I've not used my wig as I find it uncomfortable, sometimes it's just been easier to stay home than fight with a scarf, so I've found myself being more reclusive than I used to be. The hair is slowly making its return, and I keenly watch the ladies I've met who are ahead of me post chemo and their lovely hair making a comeback. My fluff is getting longer, but it's nowhere thick enough yet for me to venture out in public without some sort of coverage and my eyebrows still need to be drawn on. 

I want you all to see, the full effect chemo has on a person, and take your own health very very seriously. Aside from my weight loss (which is really a good thing for me, but each treatment I would lose between 4-5 kilos in a week, then slowly put most of it back on) my skin is so dry, I have puffy fluid type bags under each eye, and with no hair or eyebrows,I really do feel like I've aged. So as per my promise to be "warts and all about this" the photos below show my face before chemo, and as of today. Hopefully, by Christmas, Santa will bring me a hairstyle probably shorter and eyebrows, but close to the first photo. Please Santa... I've been a really good girl I promise :)

Good News Week :)

I got a phone call today that was sooooooooooo good, I decided it wasn't just good news day, it was GOOD NEWS WEEK!

I'm waiting on a call or letter to advise my new start date for radiation therapy given that my last chemo was cancelled. This afternoon, my radiation oncologist called and I was expecting him to tell me when I was starting (albeit a bit strange for the Doctor himself to call) but apparently what he needed to do was talk to me about the node in my neck where the cancer spread. For those interested or looking for new scrabble or crossword words, the area is technically called Supraclavicula fossa.

Now naturally, I got a tad nervous because, well, we are talking about the area the cancer spread outside of the breast and I did just have a scan to map and plan my radiation treatment. What I wasn't expecting was to be asked to come in for him to physically examine me and show him where the lump originally was, because in his words, the chemo worked too well, and they can't find the node that the cancer invaded!!!!

WELL, blow me down and call me excited. That was as good as saying to me... it's okay Donna, we got it all. I had been worrying about this area as I have residual swelling (aka a pissed off gland) and despite the surgeon, the oncologist and my own boss/gp all physically checking it and telling me that they couldn't find any lump, as any cancer patient/survivor will tell you, ANYTHING worries us.

Now if just had the taste buds for a glass of bubbly..... or if I had in fact any alcohol at all... I'd be having a quiet celebratory drink. Alas though, the kidneys need a good flush so good old H2O it will be. Yay me!

Well, I have always said in this journey, you should only plan ahead as far as the next appointment or test. Today was to be my last chemo day. Because I have had this stupid virus for the last week, and I knew from the blood tests done at the hospital last Wednesday that I was a bit anaemic, but the white cell count was okay enough for me to be let home, I was still going in to chemo today with an open mind that if yesterdays blood tests weren't great, that I may have my last chemo put off a week to let me recover.

What I wasn't expecting was them to make the decision after discussing the fatigue issues, the pain in my legs and a few other things, that after consulting with the oncologist that they decided that enough was enough. So not only did I NOT have chemo today, but that I was done with Chemo for good!

Not going to lie, I did burst into tears. Happy tears mainly. Of course my brain went straight to "well have I had enough chemo to kill this bastard?" Thankfully the lovely nurses reassured me that I have been given quite heavy doses, and I do remember the oncologist saying that he was giving me the greater of the required levels, and so by this stage, the cancer should be by all accounts done and gone. They also reassured me that cancelling the last chemo is a common thing. I think I remember them saying that I was the 4th in the last week that this has happened to.

So we popped into the radiation clinic and let them know because I was to start radiation 3 - 4 weeks after my last chemo. Well I'm now already at week 3 so they will review my scan this afternoon and call me with a new start date for radiation. The idea of the radiation is to target the localised area of the cancers and mop up anything left behind. My radiation oncologist discussed having a full body scan at the end of radiation, which was contrary to the chemo oncologist saying that it wasn't done routinely. Now more than ever, I think I will push to have that done, just so the little worry wort part of the brain doesn't go into anxiety overload. Time to also make an appointment with the lovely social worker too I think.

All in all I'm pretty much doing a happy dance. Because from now, I can concentrate on healing my gut, and healing my body. My energy levels will increase for a few weeks till the radiation hits that on the head again. But no more crappy steroids, I won't spend the next couple of weeks feeling like crap, my taste buds will return (down side is I will really need to concentrate on eating healthy as I have about another 7 kilos to lose for the boss/gp to be happy and me to be happy that my body is in better shape and health)

Stage one of kicking cancers butt down, done and dusted!!!!!!..... bring on stage two!!!!!