Am I weak or strong?

12/12/2015

A couple of things have thrown me off my stride this week.  My dear bosom buddy went to our surgeon this week to be told at last she can have her portacath out.  It is another milestone for her and is saying the medical team are happy with her progress; that cancer is not lurking in the foreseeable future. I was so happy for her, honestly and then I gasped; as from deep down inside me came the realisation that I am still waiting for that moment and it isn't yet.  It brought tears and a feeling of pain.

The second moment came when I had lunch with another cancer buddy and she explained how cancer never enters her head. It has gone and that's it; she is getting on with life.  I felt weak and I admired her strength.

The third moment came when my GP rang to say the oncologist had answered his questions about reducing tamoxifen and that I really should be on the 20mg, and possibly more, to benefit; plus a whole lot of other medical terminology that I am still trying to understand.

One thing that he clarified was my misunderstanding that if I didn't take tamoxifen, my 5 year life span decreased by 30%.  This I had wrong.  If I didn't do all three treatments - chemo, radiation and meds - that would bring my life span down 30%. I have done two and doing the third which could give me only about 5% less.  So basically I have a 50% survival over next five years.  And that was all good, but again, I felt like I had been hit in the solar plexus.  I had had such a good week with energy and work, that telling me I should be on 20mg got me right pissed off.

The fourth moment was in the health shop and being told to take all the negative thinking away., don't even thing negative.  Now I know I am a positive person and I am also a realist, and if I choose to wear my emotions on my sleeve, then so be it.  I resent being told that if I have a negative thought and cancer comes back, this implies I didn't try hard enough.  That will really piss me off.  I ask that you choose your words and intentions carefully when talking about positivity to cancer patients.

A good thing from the health shop was that I have been taking the wrong type of magnesium for my leg cramps.  I was using Bio Magnesium but it has oxide in it, and I needed a different form with B6 and Vitamin C and the magnesium.  I never knew you could get different magnesium for different cramps, so trying a new brand.

Another good thing too is that I am sharing my experiences with a 'newbie' in the cancer journey and it has me looking at my journal I kept (and still do), and this has brought light to my day.  Reading about 2014 (I had attached photos too) just reminded me of the people I have met along the way who have supported Wayne and I, and that kindness from others has been beautiful to experience.  In fact today I was offered financial support from a small group of women who help cancer patients with  expenses if needed.  Generosity abounds in my life for sure.

Freak Out

20/07/2015

Today I had a follow up three monthly appointment with my surgeon.  I made the comment that I seem to be getting cleavage from my left breast (which is no more) and he had a look.  Warning, warning, warning bells!  So in one sentence my morning  turned upside down - "I think we should biopsy that lump".

Off I go to Lakes Radiology for an ultra sound with the potential for a biopsy. I saw the same consultant who did my January scan and he recognised me. I told him, "tell me if you see anything, I want to know". Thankfully it was decided I didn't need the biopsy as he could see nothing sinister in the scans.  He asked what else he could do for me and I said "please scan my right breast for peace of mind" - and he did.

Now I thought I would be okay with all that happened this morning.  I had Luke with me in support and I'm so glad he was there.  We were able to go through the raft of emotions together and the 'what ifs' in a matter of two hours.

But I'm not okay really because once again I went into panic mode, my stomach was flipping, I went into the 'I will have to give up work if I have more chemo', etc etc. If Luke hadn't been there I probably would have had a melt down but I had to be brave for him.  

I don't want to have a melt down but I am feeling on edge.  I am so scared to write this blog for what others will think of me and my weakness.  I know how I should be and I know how others want me to be, and I know so many of you will have words of wisdom, yet my brain is playing a different tune.  I am in awe watching my fellow cancer mates get on with their lives, how stoic they are and the joy I see in them.  I have claimed back "joy" and that is my new daily journal entry right now.  

But it hasn't stopped me freaking out.

Yes I saw the trauma psychologist and that helped heaps.  But today I have gone into the dark hole all because of a few words.

I haven't written a blog for a long time because medically speaking I am where I should be in recovery.  Tamoxifen meds is a bitch of a drug, but if it is keeping the cancer at bay, then I need to take it.  I asked if I could take a break now and then and I was told no, never.  Shame.

Mentally speaking this is all of a challenge for me.  Some days I rise to the challenge, other days I don't.  So when reminders of cancer come knocking, like 

- getting dressed each morning and thinking I look like the One-Eyed Minion

- buying a silky chamise because my remaining boob heads East and my tops all go with it so trying to find a solution (other than a pin)

- walking with a cane in town because I am so unstable and yet I look perfectly alright

- the doctor keeping an extra special eye on me and sending me for tests

I am struggling to rise to the challenge.

When I think back to last year, that was physically demanding and yet my body coped.  This year, my mind is my illness and learning how to put a bandaid on it without it still 'bleeding' is Wayne and my challenge.  I say Wayne's too as he sees the real me that I don't want the rest of the world to see.

So not much joy in this blog, but I'm telling it like it is.  Cancer is not just chemo, radiation and meds.  It is mentally and emotionally getting through the trauma to body and mind, it is learning how to view and work with a physically changed body, and how to face the challenges of the mind games.  All incredibly powerful individually and yet put it all together and deal with it all at the same time, well I am not as strong as others, and that's okay, I'm wisely told.  I apologise for letting the mask down, but this is me - raw and bleeding, crying and smiling, joyful and resentful, grateful and alone, anxious and calm, peaceful and hostile...so many emotions to ride out.

Round 11

28/08/2014

Round 11 chemo - done! Am I excited or what about next Thursday. I just wish I could have chemo again today to get it all over and done with. 

What a contrast from last week at the chemo unit to this week. Last week there was a queue for one of the 11 chairs. This week we only filled three chairs - people had been sent home because they had infections or their bloods were too low. 

One of the processes I might have not mentioned before is that the day before chemo you get your bloods taken and the results have to be at the unit within two hours so they can assess whether your white blood count is too low to receive chemo. Mine have sat around on average 2.1-2.3. They won't do chemo if the reading is 1 or below without oncologist direction. Then the unit are meant to ring and say don't come. Well we know that doesn't always happen as we have seen people arrive only to be told go take another test now and if still not up you are going home. Pretty frustrating for those who have travelled I would imagine.

Another thing I learned yesterday is that they won't remove my portacath for 6-12 months after chemo stops - just in case. That they can now insert a portacath under a local, no general anaesthetic now, so I'm assuming they will remove it under local the same way.

Wayne always brings his guitar into the hospital as he won't leave it in the car. (He has the obligatory trip to the Rock Shop during my treatment.). This week the staff asked for a song so it became a rather rowdy 20 minutes. Lots of laughter and joy in the unit today - and no process hiccups. Elaine the head nurse was back so think everyone was back on track and focused, even if they were having a good singalong. Elaine requested 'Smelly Cat" (Phoebe / Friends) and Elaine certainly 'sang' it well!

After a quick check of the Op Shop in Rotorua (thanks Trish J) and managing to buy $10 Molly N shoes - boom - it was home to bed. Then the craving...tonight, custard. So down to the shop and custard was bought. Posted on Facebook and the next thing I find all these custard lovers coming out the woodwork. Who mentioned steam pudding and custard...yum again!

Had the Epsom salts bath for detoxifying, woke every two hours but no early morning munchies this time.

So another easy round. I wonder if they are easing off the dosage and strength - like a withdrawal - from the chemo. Don't know.  Though I have slept for four hours this afternoon.

While I was at the unit I read an article in the 'North & South' magazine about the Christchurch earthquake and the psychological effects now four years down the track. 

A Dr Lucy D'Aeth wrote about adapting/accepting what is and I found it quite valid for where I am at now. She said:

"To have the ability to prepare and plan for, absorb, recover from, or more successfully adapt to adverse effects. Adapt = the acceptance there's no returning to the old kind of normal".

As you can tell from this and previous blogs, I still long for my old normal, but reading this has helped me realise that I will adapt (as I have in these last eight months) and my new normal will arise out of all this.

I walked past the Cancer Daffodil Day stand today and it brought back memories of when my sister, Jan, was diagnosed with breast cancer five years ago. 

We were living in Whangarei and I just had to buy the cancer teddy bear because of what she was going through. It feels like that hit me harder then of what she was going through than it does for what I am going through today. I couldn't quite attach myself that I am now in that same situation. I was so sad for my sister and yet I am over feeling sad for me. Is that because my new 'normal' has started?

I also had a lovely lady come up to me today, who is an acquaintance, and she broke down in tears and hugged me not once, but twice. I felt so sorry for her that she was sad. Sometimes all one needs is a hug and to hear them say 'I'm sorry for what you have to go through'.

Today my heart goes out
- to those who have loved ones who are losing the fight, are feeling the pain, and are grieving
- for those of us who are still in the midst of treatment and are walking with faith, love, support, courage - and let's not forget modern medicine
- to those who have made it through treatment and are rejoicing that they got through a season in their life and now walk a new 'normal'

Thanks this week:
A friend's generous heart
Skype my new friend in Sweden who is as mad as me

PS: my daughter-in-law Christine is back from USA safe and sound. 

What not to say...

24/01/2014

I have only been diagnosed with breast cancer for 24 days now (who's counting!) and I so understand what this writer, Ann Silberman's blog 'Breast Cancer...But Doctor I hate pink" is saying. It is so hard to stay positive - but what I am going to try my best at is 'Kia Kaha'...thanks to my sister-in-law for that phrase.

"It's awful to tell somebody to think positively. Do you think all those cancer patients who are now dead thought negatively? It's not a good thing to put the burden of our disease on us. .... The one thing you should never do is put the onus of our illness back on us. We didn't cause it by negative thinking, by eating a hotdog when we were 12, by sitting in the sun, or by not exercising. It just happens. I am positive in spirit but that won't cure my cancer. Neither will being negative kill me. It's not my fault. Never deny our reality, whether you agree with it or not. When all else fails, what do you say to a person who has cancer?
"I'm sorry"