Still Kicking

I’ve made a decision. The other day I got a phone call from a place I’d never heard of before that had received a referral for me to continue my balance and strength rehab with them. This new place is very local, and does indeed have the equipment for balance exercises. So I cancelled an appointment with my GP to fill out forms for the Strength for Life and instead went for the initial interview for the new place. It was a ‘good’ interview but as I left there was something in the back of my mind that was troubling me. It’s taken a few days to come to the surface and it’s done so in typical Gaelyne fashion. I’ve found myself ranting about stuff with people I know understand me. Not ranting verbally, but in writing, which makes sense because that’s how I tend to work through things that bug me.

I’ve just rescheduled the appointment with the GP to fill out the permission forms for the Strength for Life program at Noarlunga. I’ve decided to keep my options open and only make any further decisions about any program after being able to compare the choices available in person. The current choices are continue driving to the Repat Rehab gym twice a week, The local place (ECH) which is local to me, Strength for Life at Noarlunga Leisure Centre, or a membership with a gym such as Anytime Fitness.

So what is it that was bothering me about my interview the other day? Well. ECH is for people who are basically about 15yrs older than me. The girl doing the interview kept trying to play detective to “figure out” why I have issues that most people don’t deal with until they’re over 65. At the time I was too polite, and too surprised by the questions to put words to it, but since then it’s been mulling in my brain and found voice in my private rants with friends. The answer to the question boils down to having had breast cancer when I was 40. My cancer thrived on estrogen, so I had to take Tamoxifen for 5yrs to keep estrogen at bay from my system so any residual cancer cells wouldnt be able to take hold. This in turn caused early menopause and my bones and joints responded to the lack of estrogen by pushing me into early osteoporosis and worsening osteoarthritis. So there we have it – premature ageing.

For a very long time I’ve been feeling frustrated and angry about this whole premature ageing thing but I realised today that it’s a bonus. Yes that’s right, a bonus. If I hadn’t had the tamoxifen and had plenty of that youth elixir estrogen in my system, I’d probably be dead. Given that alternative, coping with all the stuff I do seems like a worthwhile trade off. Better yet, I can still do something about the ravages of age by continuing on this path of rehabilitating myself, strengthening my bones and muscles, learning better balance techniques and improving my well being.

20130222-114109.jpgNext week I have a one to one session with the girl at ECH to learn how to use the equipment and so she can evaluate what my exercises will be. I’ll keep the appointment and probably attend at least one session so I can meet the person who will actually be running the sessions and of course the other people going through their paces. The girl I see initially isn’t someone I’ll be dealing with regularly so I will withhold judgement on whether their programs are acceptable or not until I see what a session is really like. I’ll do the same with the Strength for Life program, and see if I can get a tour for the Anytime Fitness gym before making a final decision.

Toasting 11 Years

Eleven years ago today I had a mastectomy. Up until that time the only reason I ever needed to see a doctor was for the occasional infection after a cold. These days, I have to book a double appointment because I have multiple issues. Having breast cancer changed my life significantly in many ways. The hardest being the changes in my body as a result of the treatments, and coping with the loss of dear friends to the same cancer, facing the reality of my own mortality.

Many good things have happened because I had breast cancer though. I’ve made amazing friends I would probably have never met otherwise. I have developed more tolerance towards the little annoyances in life. I appreciate each and every year I have on this earth, and have a different perspective than I did eleven years ago. I still struggle with the things my body does and doesn’t do since that diagnosis. Some days I struggle more than others, and sometimes probably I could deal with better than I actually do.

A few years after the mastectomy, and had reconstruction. I no longer needed to wear a prosthetic breast, and no longer had to worry about the fake one falling out of my clothes – and yes that actually happened. The worst part was at the end of the day, changing for bed. Some days I’d totally forget about cancer and that I no longer had a right breast. It was a particularly rude reminder when the prosthetic would fall out onto my feet. Since reconstruction that doesn’t happen, and as time passed the new breast no longer seems new – it’s just another part of me. Even the scars have faded. I wish that the rest of my body could have had a similar event that just makes all the annoying issues I’ve had to cope with go away or fade into the background.

So today I raise a glass and ponder that after 11 years I’m still here. Not in the best of condition, but damn, I’ve made it to a milestone in some ways I never thought I’d see.

~~.~~.~~.~~.~~.~~.~~.~~.~~.~~.~~.~~.~~.~~

I wrote the above this morning while I had my cup of coffee and hadn’t yet started my day.  As is often the case, I sometimes fall back to sleep and today was no different, aside from one exception. I had an extraordinary dream that started with a music video showing an ordinary road which slowly changed over time and by the end of the song it was as if the viewer was in a different world or country. Buildings and landmarks were all very differently shaped and coloured.  My dream switched to me walking the road back from the unusual to where I’d started, looking for where the dividing line might be such as a road sign about entering a new place or a flag or something.  In my dream, it was a flag.  There were flags along the entire route every mile or so, up on the utility poles.  Where the change took place the flag was different. Again my dream changed and I was at ‘home’ where I grew up in Shields, Mi. I was talking to my step father Bill about the place I’d just been in the dream and telling him how interesting my day had been. In reality, Bill died years ago and I doubt I’d ever had such an interesting coversation with him, but the feeling of having an interesting day and seeing so many strange and unusual things stayed with me when I woke up. I’ve always hated the word ‘journey’ in association with breast cancer, but it’s a bit hard after writing the above and the dream I had no to realise that it has been and will probably continue to be a long strange trip. In the dream, the music was something by Queensryche but the visuals were right out of a Yes album cover. I love my mind at times. It can put the most interesting mashes of things together.

Again, a toast to 11 years.  May the next 11 have less health issues and more fascinating roads that lead to truly interesting places.

 

Breast cancer awareness month

As a Breast cancer survivor of 9yrs, I find I have different reactions to Breast cancer awareness month even on a day to day basis. 

Sometimes I resent the reminder that 9yrs ago this month I was recovering from a mastectomy & fretting over starting chemotherapy. That our first wedding anniversary & my 40th birthday was over-shadowed by my recovery.

Other times I’m grateful & humble I’ve made it 9yrs past some of the worst days of my life. 

Mostly I wish for every awareness campaign there were equal amounts of energy put towards finding a cure. 

Milestone Day

Anyone just following me around today would think I probably had a pretty ‘normal’ day with nothing special happening aside from the fact I couldn’t stop smiling to myself while I rode the bus to my appointment. You see, for me, today marks the end of a very long strange odyssey that I’ve been on for the last (almost) eight years.

In August 2001 while getting ready to jump in the shower I glanced down and noticed that there was a bit of a puckering on the skin of my right breast. I thought it curious but didn’t think much of it aside from a fleeting thought about Linda McCartney and breast cancer. When I still had the same pucker a couple weeks later, I realised that I would have to make a doctors appointment to have it checked. I still wasn’t too concerned as it was only a change in the shape of things, it’s not like there was a lump or anything. I made the appointment for the following week. A few days later, late at night, just about to doze off, I happened to brush against the area while smoothing my nightgown and something didn’t feel right. On closer examination, what didn’t feel right was a bit of a hard lump right near where the skin was puckered. I’ll never forget how I managed to go from being sleepy and drowsy to fully awake and absolutely scared witless. I didn’t wake my hubby up, I sat up and instead contemplated so many things about my life. I wondered if being happy had brought this on. The last 5 years for me had been the happiest of my life. There’s that rubber band theory that the more things are good for you, the further that rubber band is stretched, and eventually it’s going to snap and hit you full force. Not that I really believe in that theory, but the next few days, weeks, months and years really could have been a huge rubber band snap. The lump was indeed breast cancer, and there were actually THREE MORE lumps in there that were seen in the mammogram. I was only 39yrs old, so hadn’t yet had a mammogram. I think it’s over 50 when yearly mammograms are recommended. It’s a moot point though. I will have a yearly one for the rest of my life (which hopefully will be a lot longer than some of the scarier predictions I’ve read in various places). Speaking to my husband, my doctor said that 39 was awfully young for breast cancer, and even though at the time I didn’t know much about it, I instinctively knew he was saying something about the road ahead. I now know that statistically breast cancer in younger women is generally more aggressive and deadlier. Mine was a ‘medium’ in terms of aggressiveness. I think I’ve been blessed.

What followed were tests, doctors, more tests, a full mastectomy with a very long recovery time, many months of ravaging chemo, 5 weeks of daily radiotherapy, times of deep despair, much fear, many false alarms, a reconstruction that almost failed causing me to require a skin graft, another long slow recovery in the midst of a crisis and move to a new home. I met some fantastic people both online (via the breast cancer mailing list) and off-line at Encore and Breastroke. I lost three dear breast cancer ‘sisters’ to the disease locally, and many more online. I had some nasty side effects. Two years after having radiotherapy, the ribs in my right side started breaking easily at the least provocation – a cough, a sneeze, a hug. This was a side effect from the radiotherapy. I went into early menopause first from the chemo and then from taking an estrogen blocker, Tamoxfen for five years. I started breaking ribs on my left side, which couldn’t possibly be from having had radiotherapy. The cause was osteoporosis due to being menopausal. I went for a year with no teeth as side effect of both chemo and undiagnosed diabetes. There are many people who’ve had chemo that have problems with their teeth later. They generally wait 3 months to allow for healing before fitting dentures, but it took a full year before my mouth was healed enough to be fitted.

Two years after my reconstructive surgery, which had involved an incision in my back and tissue/muscle moved from my back to the front to make a new breast, I developed an infection that turned into a major abscess requiring emergency surgery. I was left with an 11cm deep hole in my back that needed to heal from the inside out. This took 21 months to heal. During that time I had to have nurses come to my house on a regular basis to change my dressings. Eventually I graduated to going to see the RDNS nurs at Noarlunga hospital twice a week.

Last November I had surgery to finally close this hole, and at the same time, the doctors gave my reconstruction a nipple. It looked kind of funny because it was pale like the surrounding skin. It took awhile to recover from this last surgery, but by January I was ready to sign up for aqua aerobics classes at the pool nearby. Swimming or being in the water at all was one of the things I missed most while waiting for my side to recover. It was good to get back in the water again. In addition to the aqua aerobics, I’ve been gradually increasing how far I walk each day. It’s helped a LOT in that it’s brought my blood sugar levels down significantly, and the other day I noticed that I’m healing faster. One of the things I wish with all my heart had been done differently is that at the first signs that I was healing slowly, It would have been good to have been tested for diabetes then. Getting the big ‘D’ under control earlier in this saga may have made a vast difference in how quickly (or slowly) I healed. Ahh well, too late now for the Would’ve, could’ve, should’ves.

Aside from follow up appointments, today was the last procedure for my reconstruction. My little pale white pretend nipple was tattooed to match the other side. They made it a little darker so that if it fades it will still look ‘right’. I smiled all the way to my appointment, and as I was early, I called a friend from Breastroke to share how I was feeling. It’s the end of a long Odessey. I can’t tell you the relief I feel. It’s been such a long long road, it’s good to see the other side and realise that I’m still here, I’m healtheir than I have been in years, and working hard at keeping my diabetes in check, which in turn has benefitted in faster healing and generally feeling better. I still have plenty of health issues yet, but the worst is definitely behind me.

It’s a lovely tattoo. It’s a pity there’s no way I can share it with you, but you’ll have to take my word for it. 🙂

If I knew in advance all that I’d go through after having the reconstruction, I would probably hesitate, but fortunately I didn’t have a crystal ball back then. I’m happy that I can be in the change room at the pool without feeling self conscious, and I really hated wearing a prosthesis. I feel so much more complete now that the reconstruction is completely finished.

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