What we thought was bursitis in the left hip is a torn tendon. I’ll have to stop playing so much footy. Such a saga. Today I had a cortisone shot in it so that should sort me out. As for the right hip I’ll have to wait until the 26th of May to find out. That will also be fly to Europe day! Whee!
My cancer journey
Relay for life
It’s been a while and I’ve neglected the blog a little. To begin with, I’ve had a nasty hip problem keeping me awake at night. I don’t want to go on about aches and pains but I understand how concerning it is when a ‘new pain’ starts up and all the tests have to begin again. Over the past 3 weeks I’ve had bone scans, CT scans and many trips to the doctors. Monday I’m off to have an ultrasound. My GP is very sure that the left hip is bursitis and that is treatable with a shot of steroids. YAY! I’ve got bursitis! How exciting. Better than the alternative.
However… I also have a 4mm ‘spot’ on my right hip. This isn’t concerning me but I have to have another CT scan at the end of May to see if it’s grown. I can’t have an MRI because I have metal in the breast tissue expander. So on the 26th of May I find out the results. THIS IS THE DAY WE FLY TO EUROPE FOR 8 WEEKS. Doh! Seriously, I am not going to worry about every little ache and pain… or spot for the next 10 years.
Relay for life
Tonight I’m sharing my story to 2000ish people at the Greensborough ‘Relay for life’. It’s my 2nd public speaking engagement and not the last as I have another booking in May. My story seems so boring and not unusual as cancer touches so many. Hopefully I will be able to inspire people and help them to see that the big ‘C’ word can be life changing in a positive way.
I’ll upload my speil for you to read some day!
Don’t call me sweety
I’ve decided to shun the wig. It was like wearing a woolly hat on those hot days and I almost drowned in my own perspiration. Maybe I’ll wear one on special occassions. So far two people (men) have said ‘Why aren’t you wearing your wig?’. The women all call me ‘sweety’ and pat me sympathetically on the hand. It’s quite funny to see the reactions of people I know. My Dad didn’t recognise me! The best of all was my friends son (who I have known since he was a child) who said ‘wow, I love the way you’ve cut your hair’. I was cheerfully dancing at that comment because he didn’t realize I had chemo hair. He may be a hippy but he made my day. Actually, I have to confess I’d always wanted to cut my hair really short (being an ex hippy myself) but I was worried that it would look bad and I would regret it and cry into my pillow for 100 years. So I’m trying to embrace it and so far so good. Just don’t call me sweety and pat me on the hand or I’ll have to show you just how sweet I am and get violent ha ha.
I’ve been struggling with nasty hip pain over the last 2 weeks. They tell breast cancer patients to get all new pain checked out but I have arthritis so I’d be wearing a track to the hospital if I did that. This is new hip pain is on the left side which is new, so I went to have a bone scan this week. I’m getting very little sleep from the pain. Arggh. I was all excited about bouncing around like a rabbit from here on. The problem with it is that I can’t get a massage or go to my usual chiropractor because laying on my stomach is uncomfortable with the breast tissue expander. My friend has invested in an Australian made product called ‘Mammagard‘ and I had the honour of meeting the ‘inventor’ who is an osteopath. He is selling his kits like hot cakes in the US and I feel privileged to have the use of one. I got to sleep on my stomach last night and that was awesome! So I’m hoping to get a massage and treated by my chiro/myotherapist next week. He said I can use it for my Body Balance class also but I’m not sure if I’m that co-ordinated. Soon I’ll be bouncing around like a rabbit for sure:) http://mammagard.com/
If you find laying flat uncomfortable for whatever reason (breast related) let your Physio/chiro etc know about it because they can buy a kit.
I know I’m starting to sound like a walking advertisement for products but I swear it’s just that I feel so enthusiastic when I find something great. Do you know my radiotherapy burns went from horrid, purple, infected and very very painful to remarkable healing almost overnight. I’ve been piling on the Moo Goo (also an Australian product) and it’s beginning to look better than my other skin! I told the plastic surgeon yesterday and he could hardly believe me when I said what a state I was in just 2 weeks ago. He said he would have cried if he saw it. They are very sensitive these plastic surgeons. BTW he told me I have not got enough stomach (still) to do a TRAM flap so he might have to use butt or thigh tissue. I am devastated. I’ll leave it to you to decide if I’m kidding or not.
A picture tells 1000 words
Gladwrap is the new black
Tomorrow is going to be exciting beyond words. IT’S MY LAST RADIOTHERAPY SESSION!
Not only that… but it’s my last TREATMENT session. Having found the lump mid-January last year… you wouldn’t believe how happy that makes me. There is a large brass bell in the Radiotherapy area with a little poem above it. People ring it on their last day of treatment and everyone comes out of their rooms to congratulate the patient. Tomorrow at 7.30am you will hear the bell ringing from China. I’ll be evacuated by security for making too much noise.
How am I feeling?
I’ve got 4 pkts of antibiotics to take (a months worth) and I’m wearing morphine patches for the pain. Given that I only required Panadol after my mastectomy that’s saying something. The burns are really horrid. I can’t show you because they are in places that are not nice to show on a ‘G’ rated website but take my word for it. Glad wrap is now the new black. I’m not sure how long I’ll need to be wrapped in it and will need to have the dressings done by the nurse daily but hopefully not long.
The pain is mostly caused by the tissue expander rather than the burns. The muscles and skin that surround it are shrinking and spasming which is very unpleasant as the expander is placed behind the pectoral muscle. Of course, the muscles, bones and tissue are also impacted by radiotherapy but they can’t be seen. Most of the time I feel like I’ve been hit with a baseball bat but then I get stabbing pains to add interest.
The trouble with radiotherapy is that it sizzles for weeks after you have it, much like when you microwave food (it keeps cooking afterwards). If you can imagine the worst sunburn you ever had and then went out in the sun and got another dose of it every day for 6 weeks and each dose kept burning for weeks afterwards… that’s what it’s been like (for me). My skin doesn’t burn in the sun so I’m not sure why it’s got to this nasty stage but perhaps it’s the dose they are giving me is high. I know that most people don’t experience the burning skin etc to this degree so please don’t let me frighten you if you’re having treatment. Quite clearly they mean to blast the cancer out of me like nothing else did. That’s fine. I can put up with burns if it works!
A week or so ago the burns on my chest acquired white spots and looked very artistic. My kids said it looked like salami. Apparently it is new skin growing and eventually the spots all grow together and form an island. So now I have lovely patches of baby skin on my chest. My underarms, chest and waist are another matter. The area is peeling, dark red with purple sections and nasty green smelly slime (hence the antibiotics). Sorry about that description. I hope you’re not squirmish like the MOTH. He sometimes helps to Gladwrap me and he tries to do it with his eyes shut because he can’t handle the sight.
In the last week we have had our anniversary (and Valentines day but we don’t celebrate it). We went out for dinner. I donned my wig, drew on my eyebrows, slathered Solugel and anaesthetic on my burns, wrapped myself in Gladwrap and off we went. A stunning sight I have to say. Not to mention the ‘painful bra conundrum’ which I won’t go into.
The MOTH thinks my new white/grey wiry hair is lovely. He seriously means it! It must be love. It’s about 1cm long now so I’ll be glad to fling off the wig very soon. I have one eyebrow that’s growing dark brown and strong and one that’s white and fluffy. Strangely enough the white one is the same side the tumour was on. I have that ONE black hair that used to grow on my face back and I’m yanking it out again like the good old days.
It’s just as well I’m on Morphine because the world is just floating by. That and the fatigue from radiotherapy (which takes 6 months) and I’m in a kind of foggy life where anything that happened 2 minutes ago is forgotten.
Hooray it’s all over! I’m going to pick up my life in the next few months and live it with even more gusto than ever. No more nanna naps, daily medical treatments or painful procedures. AND no more eLearning consultations. From here on I’m going to be the bohemian artist I was born to be. I’ll be firing along and ready for my reconstruction surgery in 6 months time.
Don’t forget to listen out for the bell tomorrow!!!
Now that I have 2 weeks left of treatment, I have nasty burns from the radiotherapy across my back and chest down to my waist. I thought they were ‘normal’ but the nurses and doctor said they were very nasty and I need to have it dressed every 3 hours and by the nurse every morning. If it doesn’t improve they will need to stop treatment. Aint nobody got time for dat! (one of my favourite quotes from a YouTube clip).
I’m counting down the days to finishing 12 months of treatment. Let’s hope the burns don’t get worse. Besides, we are going away next week. Not too far away because we have to come in each morning for Radiotherapy (and now dressing changes). Ho hum.
I’m getting very sleepy now too. Yesterday I slept 4 hours in the afternoon, woke at 7pm, went back to bed at 10pm and slept through the night. That’s a lotta sleep! I still feel sleepy today but I’m trying to stay awake.
I’ve had a couple of exciting events this week to balance out the bad stuff.
1. I went away for 3 nights with my lovely sisters and did artwork all weekend which was so nice.
2. I was asked to draw and design a label for a famous rum company in QLD (not Bundy)
3. I got a 2 page spread in a magazine (page 54 onwards) http://issuu.com/winkelen/docs/winkelen_february_2015?e=0/11228254
4. Next week I will have officially lived to an older age than both of my parents (biological). Mum got cancer at the same age as me (53) and died on Feb 8th 20 years ago when she was 54 (the age I am now). That’s a scary thing. Hooray I’m still here to pester you all!
So the blessings outweigh the radiotherapy burns!
I’m so ‘glad’ I’m all wrapped up in Gladwrap for our wedding anniversary next week. That should spice up the marriage a bit. That and my new snowball hair that’s growing. Hubba hubba!
Of course the other problem is that I’m likely to punch anyone who hugs me.
Ground hog day
Life is a little like ‘Ground hog day’ right now. I take myself to radiotherapy every day, work in the morning, sleep in the afternoon and get up and cook tea. I’m looking forward to 3 weeks time which Sophie points out is Friday the 13th.
I have a nasty itchy rash across my chest, shoulder and the back of my neck which doesn’t want to settle but the staff assure me my skin looks amazing given the stage I’m at with the treatment, so I would like to thank the cows who provided the ‘Moo Goo’ for that!
This weekend I’m going away for 3 nights with my 3 sisters on an art retreat. I’ve packed all my art gear and no clothes so I hope it’s warm. That will be 3 days off radiotherapy and a lot of chin wagging instead.
Last weekend I went to a party in Kilmore with the MOTH. It said on the invitation ‘a little bit of country’. Something came over me and I decided to go as Dolly Parton. I made the decision on the day of the party so it was a bit ‘last minute’ but with the help of Sophie managed to find a wig and throw some clothes together.
Half way to Kilmore it dawned on me that I probably wouldn’t know anyone as it was Colins’ work mate and the usual crowd wouldn’t be there. Too late!!! I looked like an idiot and that was that. When I arrived everyone had on the token cowboy hat, checked shirt or their usual clothing on. I introduced myself as Dolly to several of Colins workmates and they didn’t react. To top it off one person asked me if it was my real hair. REALLY???? She thought I looked like that all the time? How flattering. Yellow shiny doll hair that cost $13 looks real? I could have saved myself the $$$$$ I spent on wigs and just gone to the $2 shop.
By the way, the irony of being Dolly Parton wasn’t lost on me. I amuse myself sometimes.
Dishmoptop makes a comeback!
Hey I have a hairy head coming! My head is the only place it’s growing so I’m guessing the Nioxin hair booster is doing it’s trick. I still have no eyebrows but I’ll continue to draw them on (badly) as before. The hair on my head is WHITE and the texture of cotton wool. I might end up with a white ‘fro’ at this rate as my hair was already curly and most people get curly hair after chemo. At some point I’ll shed the wigs (which confuse people enough as it is) to my new hair. I’ll be glad for the cool air.
Just to give you an idea, I look like this except my hair is only about 5mm long:
Radiotherapy is going as good as expected.My friend Jan, who works at Pharmore in Croydon is my helpful expert on products. She is trained up on ‘Moo Goo‘ so I’ve been using it to prevent burns and to stop my skin from shrinking. It’s a fantastic product and it’s AUSTRALIAN. It was originally used on cow udders. I’ll leave the irony with you to figure out. The nurse at radiology was very happy with me using it as I can’t use anything with perfume, alcohol etc in it and I need to apply it 3 times per day. I’ve mostly had 8.15am daily appointments which is just what I wanted so I’m doing a happy dance about that.
Last week I had a burst of extraordinary energy. It was like I’d been drinking Redbull or something. I cleaned out cupboards, re-arranged furniture and began illustrating 3 children’s books at the same time.
Now the fatigue from radiotherapy is beginning to hit and I’m back to wanting sleep. At least I had a week of being my old ‘propeller head’ self. I suspect the MOTH is a little relieved because my energy usually involves work for him he he.
I can have cancer and still be joyful
Happy new year to you all! 2014 was full of joy and also full of unexpected journeys. It’s brought me to write my thoughts about happiness. Don’t feel that I am lecturing you… I’m just sharing my thoughts for the new year.
People seem obsessed with finding happiness. If only I had… if I wasn’t with… if that person would leave me alone… if I had a different job… then I would be happy. I don’t chase happiness.
Happiness is always momentary. I am happy when I’m eating my favourite meal. Beginning a friendship or relationship with someone new can bring happiness. Seeing a pretty butterfly or flower will do the same trick. The problem with happiness is that it’s transitory. Joy, however, is deep within your soul. You can be full of joy and yet still grieve or feel sad whereas you can’t share these feelings with happiness.
By chasing happiness we are always looking for a 5 minute ‘fix’. Ultimately in the end we will return to our original feeling… unsatisfied.
The choices we make in order to find happiness often alter our long term happy feelings. Examples:
1. I’ve been ‘happily’ married to the MOTH for almost 35 years. This is not because we are perfect or even ‘right’ for each other. It’s because we are committed to making our marriage work. We are not compatible nor do we share the same interests or even the same values (originally). We are not always happy with each other. As well as that:
- I detest sport- He loves it
- I am impulsive- he is cautious
- I love possibilities- he loves to know what’s happening or going to happen
- My mother was a lay preacher- his father was a tough prison officer (our family values are different)
I could go on and on but I don’t want to air our dirty laundry here ha ha. The bottom line is, we could easily say tough times have destroyed us but instead they have strengthened us. If we decided we weren’t happy everytime we had tough experiences we wouldn’t be here today. Seeking happiness and ‘getting rid of negatives’ isn’t a long term answer.
2. We restored 2 very old houses while rearing 3 young children. When I say ‘we’, I mean ‘we’!! We lived in 100% shambles for the entire time we lived in them, up until the time we put them on the market. After we sold each of them we purchased houses significantly cheaper than the one we sold. So we left our ‘beautifully restored house and went to another ‘renovators delight’ and began again. We paid our house loan off by the time I was 30 years old and have never borrowed ANY money since. The fact that we are financially comfortable is not because we are ‘lucky’. It’s because we have battled for it. Our happiness hasn’t come from having more, it’s come from doing without. Living in houses which are in a constant state of renovation is tricky. We had 3 children sleeping in the loungeroom for 5 years, for example. Not to mention the ‘no bathroom for 6 months etc. Up until recently we drove old bomb cars. Remember the MOTH’s beloved Camry? In fact, we only had one car for the first 10 years of marriage.
Even now, we may be seen to be jetsetting around the place having a wonderful time, but we make the following allowances:
- No private health insurance (hospital)
- No pay TV
- No excessive use of heating and cooling
- I dye my own hair (when I have it!!!)
These choices altered our long term happiness and also gave us many adventures and happy memories.
3. The most famous question of all. How do you find time for art? Answer: I make it. I worked fulltime, went to gym at 6.30am on my way to work, reared my 3 lovely children and studied for 8 qualifications for 20 years and still found time for creativity. How? I don’t watch television and I don’t iron. These are my priorities. They probably won’t be yours but don’t spend your life saying ‘I don’t have time for…’ or ‘If I had time I would be happy’. You will find time for anything if it’s what you really want.
I won’t bore you with the long list because I know you get the point and I don’t want it to seem I am making a judgement on others. That’s not my intent.
So what is the point of all of this prattle?
It’s now 1 year since I found that dreaded golf ball sized breast lump. If I was just chasing happiness in 2014 and it was based on being healthy and getting healed I would now be a very unhappy person. Do you know what? I’ve never felt so full of joy. Life is never the same after you have cancer. You find happiness rising from things you never did before. You overlook the faults of others. You see life through different lenses. 2 of my friends have taken up motorbike riding after having breast cancer. Woo hoo!
It’s true, I’ve been blessed in many ways but I’ve also battled through a lot of tough stuff in 2014. To be happy it would have been easier for me to stop running 15kms per week and give up. I could have sat on the couch and gone to bed very easily. What was I trying to prove? Well I was trying to prove that by sticking with something you reap the benefits. It didn’t make me happy exercising while I was sick but it certainly improved my health and mental state. My doctor called me ‘superwoman’ many times. After 9 months of chemo I was feeling pretty OK! So I don’t seek happiness. I have joy and that is what keeps me afloat. The happiness comes from appreciating what I’ve already got and by persistence in building good foundations.
That’s my little rant over for today so that should make you all happy LOL.
Medical hoo ha
I’ve finished 3 of my 33 radiotherapy treatments. It’s a little solitary, compared to chemotherapy. Even the radiologist runs out the room to get out of the radiation. It takes 30 minutes for the treatment (not including the time it takes to get changed into a magnificent gown and back again) and car parking is easy so I drive myself. Because of my tissue expander it is a little more complex and I end up with beautiful drawings all over my chest with a marker pen. They match the tattoos very nicely. I’m sure it is going to be a piece of cake compared to chemo and surgery.
Soon I will be able to microwave my own food. I’ll just pop it in my mouth and ‘voila’! Anyone for reheated lasagne?
The MOTH told me that if he bought a boat he would name it after me: ‘Gone with the wind’. I’m not sure which part of me he was referring to but I think he meant the departure of ‘leftie’.
Speaking of ‘gone with the wind’, my hair is refusing to grow back. The first two types of chemo I had it started growing back prolifically after 4 weeks. Now 6 weeks after Carboplatin and Taxotere my hair is STILL FALLING OUT! Well I did the stupid thing and checked Google. There is a group of angry women out there who were not told that Taxotere can cause permanent hair loss. Some people found it was very slow and took years to get a light crop of hair. Others have permanent hair loss.
Of course, life is more important than hair but sometimes it doesn’t help women to re-gain their self esteem and get back to normality. The hair I have left has gone white and like cotton wool. It’s sparse and like I said, still falling out.
I REFUSE to believe that my hair won’t grow back. It’s usually like a blackberry bush. Strong and prolific. I’m hitting it with $140 worth of Nioxin hair booster which I put on in the shower. Then when I rinse it off it washes all over me so I hope I don’t end up like a gorilla!
Since my tissue expander is now dislodged and no longer attached to my muscles I can move it around. OK. Don’t think about that too much. The weird thing now is that It SQUEAKS!
My dear friend Gail gave me a loving big hug yesterday and I got the giggles because it squeaked. I had to demonstrate it to her to explain why I was laughing. She is very impressed. I think she wants one too.
Sigh. How am supposed to soar like an eagle?
Radiotherapy starts tomorrow at 3.30pm. I hope my bits don’t squeak. It would almost be as embarrassing as last week when I went there and discovered the glitter from my Christmas table cloth had fallen into my bra. The radiotherapy guy didn’t mention it and so neither did I.
Whoever thought cancer could be so amusing?