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!!!!!

Just a Little Glow Worm!!!

Today was my scheduled appointment with my radiation oncologist to get the ball rolling for my treatment once I finish chemo next week...... which nearly got derailed last night.

Apparently I just can't get enough of the emergency department. But thankfully this time I got there under my own steam :)  

Chemo patients have a golden rule they have to adhere to, and if we get a temperature of 38 we have to head off to hospital. So after a couple of days of an annoying cough, and hoping it was just an annoying asthma cough, I started to feel a bit warm so took my temp.... sure enough, I was 37.5  By 7.30pm I'd reached 38.3 so after finishing dinner (cos it's never a quick trip when it's the hospital) we headed in. I have to say, they are so lovely, and considerate when it comes to chemo patients. They kept me away from everyone else sitting there, got me to a two bed cubicle and made sure anyone who came in wasn't contagious and made sure I was comfortable while they stuck me with a crappy cannula (I reeeealllly sook at cannula's) Thankfully my white cell count was acceptable, ruling out infection, and chest x-ray and pee test was good, so it was decided whatever was going on was viral and semi reluctantly, they let me home as long as I behaved myself at home, and presented back there if I felt worse. My temp has been up again a bit this afternoon, but paracetamol has it under control and I feel a bit better, so hopefully it will resolve itself by tomorrow.

Back to my radiation oncology visit.

Today really reminded me that on this wonderful journey, you really need to take it one appointment at a time. The original plan was for 5 weeks of daily radiation treatment (weekends off) But the good doctor has decided to extend it by another week. Apparently recent studies have shown that younger women (awww bless his little socks) do well if the original site is targeted solely for an extra week. So I have an appointment straight after my chemo next Wednesday at St Stephen's Imagery, for my CT planning scan. They will put little tattoo marks to identify the radiation areas... yes I'm going to be a tattoo wearing grandma, and then radiation starts September 19th.

So there you have it.... starting mid September, I'll be a little glowing glow worm.... well, not really, but it's a cute analogy.

Bit of a Mixed Bag

Just back from the Chemo Oncologist today, and I have to admit while it was a good visit, it was a bit of a mixed bag kind of visit.

As usual, I managed to throw him a curly question and just prove how different chemo affects everyone individually. This chemo drug, Docetaxel causes pain that focuses on muscle and bone, yet during the days I suffer that, it also feels like someone is ripping my ovaries out. Yep, he didn't have an answer for that one lol. Also I told him my hair was definitely coming back... he just smiled at me. But I know it's getting fluffier.

The one downside to the visit, was my question about having a top to toe type scan once this and the radiation therapy was done to ensure I was cancer free. Apparently it is not routinely done. They know and are confident that the chemo is doing its job as they cant feel the tumour in my neck and haven't been able to for a long time. I have to admit that sat me back on my butt quite a bit. I think I was looking forward to having that piece of paper at the end of all this that said 100% you are cancer free. I will be having a mammogram and ultrasound in January (I might make sure they ultrasound the neck as well) but that will be it. I know from the initial body and bone scan that the cancer was no where else in my system, and as he said, I've been given a big dose of chemo and that's gone through the whole body to seek out any nasties. The radiation will be a big dose too, and that will focus on the localised sites of my breast, my neck and my armpit.

So I have to take that leap of faith, and also as he said, be vigilant with my health, my weight and my fitness. And be vigilant with symptoms. Again, he reminded me that cancer pain is persistent, doesn't resolve and is unusual. So they will watch for that at each of my checkups.

One thing I didn't know and was relieved about was that being triple negative, IF there was to be a re occurrence of cancer  (ie a secondary cancer)  (and that's a big if ) it will happen in the first 3 years.... and as each of those years pass, the likelihood is less and less. So unlike those who are hormone positive I wont have to wait 5 years to get an all clear. YAY. Got to find the positives and in the words of George Michael's song Faith  ... well... "you gotta have faith"  Think I might make it my ring tone :)



George Michael - "Faith"

Nearly There!!! Chemo Tomorrow and Slight Dummy Spit

So this is my grand daughter Lilly. She had a bit of a dummy spit this past week as things didn't go quite the way she wanted. I sympathise Miss Lilly as I had a bit of a dummy spit myself this week.

You see, this current chemo drug is fairly shitting me to tears as I have lost my taste buds. I have this metal/acidic taste in my mouth 24/7. And while I can smell a delicious cup of coffee, or a lovely dinner cooking, I take the first bite or sip and think, that's not too bad and then WHAMMY... aftertaste and it all goes down hill from there. I may as well eat cardboard. It would be much more pleasant.  I see all these gorgeous meals on facebook and think... well that would be lovely, if it didn't taste like a big ole pile of poo to me. So I wade through the weeks, trying this food, and rejecting it. I pour a cup of tea, make it strong and sweet, and through half away (and that's on a good day) I chuck it out. Some days it's chicken with cheese and sweet chilli sauce toasted in a wrap, for lunch and dinner, because I just can't stomach anything else.  So much for healing my body during this process with good whole and real foods... pffft... most days I spend an hour feeling peckish... thinking what the hell do I even want..... and just giving up. I can taste every chemical in food especially if it's been sweetened with artificial sweetener (which I've never really liked in the first place)

I know, its third world problems... but I love food (which explains why I've done Weight Watchers, the cabbage soup diet, that french diet, the Tony Ferguson shake diet and on the odd occasion have been known to join a gym - a rare sight. There's more chance of spotting a unicorn frolicking down the main street.

What I did find last time and this time, is that by some miracle, the tastebuds return for one day. ONE WHOLE FREAKING DAY... almost. I can drink water, I can taste most of an evening meal, I can enjoy nearly a whole cup of tea!!!!!   and then....... I start the steroids for chemo the next day.... and bang, the side effect of those tablets... is a horrible taste in the mouth.  Sigh........ Back to square one.

So I've looked at the calender and I've checked the dates... and September 12th, should be a good day..... the tastebuds should start to fire up again, and hopefully thanks to no further chemo and steroids I'm hoping they'll improve. It would be nice to go out and have a cup of coffee that I can enjoy. And a big hamburger. Oh that would be lovely. I can foresee a bit of an issue here.. I may have to join that gym again! Luckily, I am losing a little bit of weight each round!

On that note, I have the hospital physio coming to see me during my chemo tomorrow. On a more serious side, I've really struggled this round. Walking to the veggie garden or the letter box has left me feeling quite wrecked and weakened. I've been trying my best, walking regularly around the 5 acres, but where once I'd fairly sprint around and leave Rick in my wake (which is a bit mean given he needs two knew knees) I'm finding I'm asking him to slow up and wait, and needing a little rest when walking from front paddock to back. So this lovely lady is coming tomorrow to talk about a program that will start when I'm nearly done with my radiation therapy, to see if I can join the and help me gain some level of fitness again.

I've also struggled with queasiness that's ever present. I've blamed the taste bud saga, but I do wonder if it's actually stemming from my gut health (given that it's being shot to pieces with each chemo treatment) I'm a strong believer that our gut health is the basis of our general health, So I'm working on helping that along the best I can.

My poor red hands.

My hands and nails have given me more trouble this time. I had one lovely lady who sympathised, hit the nail on the head when she said it feels like your hands/nails have been caught in a door. The pain in my hands make it difficult to use them. The pain in the nails even makes it hard to type, scratch, and generally most task that involve finger tips (and that even cutting them short!)  and if i accidently bang them on something... OUCH.  I can't even start peeling a mandarin. Then there's this weird redness that hits about day ten. Just on the peripheral on the outside of the palm and up the edge of the little finger. It reacts in hot water like a burn does. This time its much worse. I didn't take vitamin B this round as I'd run out, so I'm off to get some more tomorrow to hopefully see an improvement.


Anyway, I could spend another half hour whinging about the watery eyes, blurred vision, dry skin, and puffy bags under the eyes... but that's enough whinging for one night. I don't have peripheral neuropathy, I don't have the skin on my feet peeling off nor do I have the horrible pain in my feet many have. I don't have to face the prospect of a mastectomy that many go through all this and still have to face. I may not have my eyebrows or lashes anymore, but I do have fuzz growing back on my head, despite my oncologist saying it's not possible. I do enjoy proving him wrong!

I guess my biggest dummy spit is how bloody useless I feel. Thank god for a loving and patient husband who gets things done around the house and family that is so supportive and understanding, and friends who are just bloody amazing. So next time Miss Lilly has a dummy spit, I might just sit on the floor with her and join in.