Power of empathy

18/05/2014

Yesterday we had a visit to my new oncologist - well actually it was the oncology registrar we saw - Prashed from India. First thing Wayne asks "Done any match fixing lately"? Needless to say, we got on well!

Another chemo done

During the week I had requested and got my medical notes from my surgeon - 50 pages. I wanted to be prepared in case the registrar/oncologist didn't have all the information in front of him (which is what I heard had happened to another patient). So I had a bit of reading to do.

How fascinating and mind blowing to read all about how they came to the decisions they did about my diagnosis, how the operation was performed, where I am going with treatment, and best outcome. Something they hadn't told me about though and I read in my notes was that I have got some 'glass ground nodules' in my lungs which they are going to CT scan when treatment over. They don't seem too concerned but will check out anyway.

I was quite encouraged to read and I do believe they are doing everything they can to get me well and clear of cancer. I may be naive in putting that much trust in the health system, but I have no other choice and I have peace of mind and spirit with that decision.

The registrar was pleased with how I am travelling with the AC 'Cosmopolitan cocktail' and believes the lighter treatments will be easy. I'm praying so too.

We are reducing the steroids so Wayne can 'bring out the knives' again and the Community Night Owls can go and check out another suburb as the streets of Nukuhau are safe again from the threat of a mad woman running through them at 2am.

We left the registrar and cancer nurse in fits of laughter so it was a happy visit.

On arriving back to Taupo our car broke down again. I believe we had an angel with us to get us there and back before the inevitable. Really hoping we can get to the bottom of this recurring problem.

It's been a good week. I have handled work well. Wayne and I are working well as a team though I can see there are definite days when the strain is etched on his brow. Please remember him too, lovely people. As he said today, it's so hard watching someone you love with little energy and suffering after chemo treatment and there is nothing you can do. I feel for him as he doesn't deserve this pain. He is a good, kind, talented human being looking out for his loved one and I ask for prayers and support for him too.

Good news which brightened my day. The woman I wrote of last week who told me she is terminal and you may recall she wanted to go on a train trip - well it's happening. We saw her today and she looked so excited and so happy because her husband and her are off on a train trip down the South Island. She has something to look forward to and the excitement over her face was pure joy. She also told me that she had arranged her funeral and had been into 'My Music Store' and found the song she wanted. 

I came across an article today about empathy and I am going to share it with you:

The Power of Empathy:

So what is empathy and why is it very different than sympathy. Empathy fuels connection.
Sympathy drives disconnection.
Qualities of empathy:

• perspective taking - ability to take the perspective of another person or recognise their perspective as their truth
• staying out of judgment
• recognising emotion in other people then communicating that

Empathy is feeling WITH people.

Think of empathy as a kind of sacred place. It's like for example when someone is in a deep hole and they shout from the bottom "I'm stuck, it's dark, I'm overwhelmed" and we look and we say "I know what it's like down there and you're not alone". Sympathy is like "Ooh, it's bad huh, do you want a sandwich"?

Empathy is a choice and it's a vulnerable choice because in order to connect with the other person you have to connect with something in yourself that knows that feeling. Rarely if ever does an empathetic response begin with "At least..." eg "I've got breast cancer", "At least it's the better cancer to get" and we do it all the time. Someone has just shared something with you that is incredibly painful and we try to put a silver lining around it. One of the things we do sometimes in the face of very difficult conversations is we try to make things better. What makes something better is connection.

I have been guilty of this for sure, and also Wayne and my sick sense of humour covers up a lot of the "we're okay" persona. I realised that I actually did this and said this when I spoke to my terminal friend last week. I said exactly these words "I don't know what to say. I'm so sorry". I could only say this because I dug deep into my vulnerable self, dug up that feeling of connection and expressed it. I witnessed my big 6'6' male Maori colleague say this to me weeks back and it still touches me when I recall that moment. It is something that each of you have said to me at some point. I

I thank you for 'digging deep'. I ask you continue to connect with others as well in just the empathetic way you have with me because it is such a blessing for the receiver.

Thanks this week:

• neighbours brought yummy pumpkin soup
• Friend for ringing me with comfort and prayers
• Neighbours for letting me share the crazy madness and happiness that is Ruby (their dog)

• Wayne for cooking 3 yummy crockpot meals this week!

10 day upper on the way

13/05/2014

So my 10 day 'downer' is over and I am on the 10 day 'upper' before the next chemo. Well that's how it feels to me anyway.

Thankfully I managed to keep the taste buds working by getting some Listerine (although it just about blew the back of my head off as Wayne got me the alcohol one). I'm guessing this has helped as drinking water and whatever else has been quite easy this time.

My only note of concern really was the steroids and the crazy brain. I actually woke at 2am, wanted to get into my dressing gown and run - anyone who knows me knows I don't do running - run through the streets of Nukuhau, like Forrest Gump. Then the next thing was I'm thinking to myself "better tell Wayne to hide the knives. I feel like I might do so something irrational". Poor Wayne, don't think he is sleeping much nowadays.

Yep, hide the knives Wayne

Then there was the trip to A&E. I had 'new' pain that reared its head and felt like it was in my chest cavity, so phone call to the cancer nurse who said off to A&E and get checked for clots. So after all the tests and x-ray it was reassuring to know cancer wasn't showing up in my ribs. It's all very well doing chemo but you don't know if cancer has already gone somewhere else. Couldn't find the cause and it eventually subsided after 48 hours.

Had a wonderful Mother's Day with my mum, and Luke and Christine at the Mount - one of my favourite places - to be by the sea.

Mother's Day excursion to Mount Maunganui

I met up with a lady from the 'look good feel better' workshop this week. I ran up to her and asked how she was, me all smiles, and then I looked and tears were running down her face. "What's happened" I asked. She said she had done everything right, chemo, radiation, but it had now gone to her liver and she had 6 weeks to 6 months, they didn't know. This darling frail woman was broken and all I could do was hold her. Once her tears subsided I asked "What now"? She said "I want to go on a two day train ride". It seems to me such an achievable easy thing to ask for. I so hope she has a network around her that can make this happen.

So of course gets you thinking again about your own mortality and bucket list. I think my bucket list is pretty simple. If I was terminal I'd be cashing in the life insurance and taking Wayne, Luke and Christine to Paris - easy!

Closer to home - a trip to Queenstown. Oh, and I want to drive a Mini on the West Coast roads. I hear the roads are a dream.

What else...well I hope I've got plenty of time to think up some more.

'LIKE'

04/05/2014

Facebook says this about the 'Like' button: "The Like buttons lets you show your friends when you're interested in something".

Well you know what it means to me when you 'like' my post? It says "I hear you. I'm sorry for what you are going through. I am here to support and encourage you". That is what I believe and again you lift me so thank you. Not everyone can comment because it is hard to know what to say. Thank you to those who do. My cousins are especially forthcoming in their comments (must be the Bollen trait eh cuzzies) so thank you dear ones. But most of all thank you just for stopping by and reading. It isn't easy to stay strong and upbeat day after day. I'm blessed to be born with a pretty happy disposition so it takes energy for me to stay down for long unless medically induced (chemo).

As you may know I had round 3 this week. Yay, one more AC 'Cosmopolitan' cocktail to go on 20/5/14 and then we can tick the hard stuff into touch and go for hopefully a nice 'Pinot Gris' to finish off. I'm thinking chemo should be over by August.

Wayne was wise to get me to drive over to the appointment. Ever since we bought a Mini back in 2007 I have so loved driving again. Of course the Mini has gone but the love of driving like I am in a Mini is still there. So I hoon-ed it to Rotorua and embraced the control I had over my life for 45 minutes, if you get my gist.  I put "Bodies hit the floor" CD on and screamed my way through that song.  It will become an anthem I'm sure.

I had a chair with a view this time and my nurse was Andrew from Shropshire. These nurses are beautiful people. They have a special empathy and compassion with their patients.

I had a portacath inserted at the time of my breast surgery. In medicine, a port is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical "needle stick". How glad am I that I this was suggested to me from a woman I spoke to in the street who had been through treatment. A throw away comment but one which has proved its worth.

This is me after operation in February still in hospital.
Portacath fitted at time of lumpectomy but they can
do it under a local now

I watched Andrew attempt to administer through a vein in the hand to a big strapping Maori guy and it was agony. Andrew soaked his hand in warm water (I presume) to bring the vein up and then tried to find the vein. It wasn't pleasant to watch but Andrew did an amazing job. The Maori guy looked and me and I at him and my heart went out to him and his pain.

As the meds took over, I basically started to doze and sleep. So my plan to head to work Wednesday and Thursday as per the previous two times went by the board and I slept, drank and wee-ed my way through the next 36 hours. Last time I didn't keep my fluids up enough due to taste buds deserting me and I think that was part of my spiral so this time Wayne and I were determined to keep my fluid intake up this time. I am eating what I feel like and as per in the past when I want to eat, I need to eat now! Wayne is great at dropping everything and going with the flow of his crazy steroid induced wife.

So all in all, not a bad week so far. Each treatment is managed accordingly and I think as a team, Wayne and I are pretty unbeatable. We are working so well together.

Just wanted to drop this poem in here today. It is my favourite. It has just been released as a children's book by Mati McDonough and I have bought it to put aside for my first grandchild if/when he/she arrives...it's a "just in case" I'm not here but I want the little one to know they were in my heart already at this moment, on this day....

[i carry your heart with me(i carry it in]

BY E. E. CUMMINGS

i carry your heart with me (i carry it in
my heart) i am never without it (anywhere
i go you go,my dear;and whatever is done
by only me is your doing,my darling)
I fear
no fate (for you are my fate,my sweet) i want
no world (for beautiful you are my world,my true)
and it’s you are whatever a moon has always meant
and whatever a sun will always sing is you
here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;which grows
higher than soul can hope or mind can hide)
and this is the wonder that’s keeping the stars apart
i carry your heart (i carry it in my heart)

Low Days

18/04/2014

It was explained to me that the whole cancer experience is a roller coaster of all the senses. This week was emotionally and physically tough.

I headed home to Matamata for a cry and a hug on Sunday with Mum. I didn't know that when I got out the car I was going to fall in her arms and shed tears. She said "I just want to take your hurts away" and I said I wanted her to "kiss and make it better".

Monday I was in bed all day. The body separated itself from the head and just went blah and would not, could not budge out of bed. Maybe I haven't drunk enough this 2nd chemo round. I am now trying Epsom Salt baths to see if I can detox the chemicals out. 

Each chemo round is about learning how to manage the chemicals that are rushing around the body. I guess I may have been a bit cocky after the 1st round and it going so well. Note to self - Chemotherapy is not a walk in the park, Andrea.

This week I failed miserably and I became sad. I have not been great company. I have pushed many away because I didn't want to impose my morose behaviour on others. I have not been able to lift myself out of the doldrums. I still put in some good hours at work but it was a struggle. I have shed buckets. Wayne has been my shoulder to cry on. He is so gentle, kind, loving - just holds me as I sob. He just keeps saying "let it out, let it go, this is good".

Please - I'm saying this not to invoke sympathy. There's plenty of others who are going through/ have been through this experience and know what I'm saying, but haven't told a soul. They have just taken the bull by the horns, stiff upper lip and got on with it. Well me, I'm just sharing this whole gambit of the cancer experience from where I am sitting.

This raw, vulnerable, bald human being is not someone I recognise in the mirror. I feel like I am being stripped bare to the core and I have so far to go, that I am not going to recognise the person at the end of all this. Who will arise from this whole experience.

Thank goodness for the arrival of Luke and Christine. To have their presence around me gives me joy. They remind me I am still a mum, a mother-in-law; I am wise, loving, giving, still speak gobbly-gook, funny, nurturing - they help me remember me.

So how did I forget all that this week. Well my wise niece "Oh auntie, tough once those steroid highs wear off isn't it? This is so normal...it passes".

Oh Lord, really, is that what this week was all about? This just confirmed again, those chemicals are going to send me roller coasting off the scale now as the next two rounds get stronger.

Hang in there with me guys, this is a hell of a ride...

Thank you this week for the beautiful kindnesses from:

• Jean, our neighbour, for coconut milk
• My angel of a neighbour for an amazing Entertainment Events Book for the year and wine
• Distant cousins for the beautiful flowers

Shave Day

12/04/2014

Time to shave it off

This was 'shave day'. Dr Link, the oncologist, had said my hair would start falling out this week and he was right, so the decision was made for Friday, 12 noon at Hair Mechanics for the shave. Beautiful vivacious compassionate Raynor did the deed and she did it with grace and in a dignified professional way.

It has been an emotional week and no, not because of vanity, but I am guessing I am now going to be identified as "she's got cancer". Shaving my head makes me stand out as 'sick' and in my mind I'm not sick, tired but not sick.

I then realise that this cancer treatment isn't going away any time soon and with shaving the hair, I realise I'm going to be a long time without a lot of hair and a long time under the cancer umbrella.

And then I also realise I am fighting for my life now. I can be upbeat 80% of the time and I can put all my trust and faith in God, and yet when I crawl back into human mode, I'm just a wee bit terrified.

And the lack of hair makes me vulnerable emotionally and raw to the elements. Some may think, for goodness sake, it's just a hairstyle. Well I can't explain it, but it just does emotionally challenge me.

So the shave is done. I had a number 2. I shed a few tears. I didn't recognise myself. I didn't want to look in the mirror.

But I had such loving support around me. Wayne held my hand when my hair was being washed and took photos of the experience, and gave me that reassuring look that he still loved me however I looked.

My cousin, who is my spiritual rock, I believe today represented my family.

Kathryn was my police family rep today and along with Leanne brought me calm and gentleness.

Debbie was Debbie - she loves me regardless of hair or no hair, and can't wait to do my makeup!

And I know there were lots thinking of me as well, especially Luke and Christine who couldn't be here, and surprised me in shaving their hair in support.

I thank you from the very roots of my hair!

So I survived the day. And yes, I will many more days like this.

This is me - vulnerable, raw, terrified - but elated that I got to go for a girlie weekend at The Mount and beach had a swim - my happy place.  This is my 'home beach' from my teenage years so lots of driving round in cars, watching guys and sun and surf.

I haven't been to the beach for so long, must be over a year, and that is where my Dad's spirit is, so I put my feet in the soothing salt water and talked to my Dad and just let him know how I am. I miss him today more than ever for some reason.

I remember he told me once he saw bald women overseas during the war and they were ugly. Well Pops, I need to know you don't think I'm ugly now. I just want to be your 'Bubs' again with a tender hand on the top of my head saying "You're beautiful Bubs".

Round 2

11/04/2014

Listen...what's that strange noise? It's rain!

Round 2 chemo this week. All went to plan again - nice and smooth. Went back to work for two days. 

Then today at lunch time came a cruncher, just zapped of energy, weepy, feeling sorry for myself - just wanted that hug and reassurance from Wayne, only he had to go to work and leave me to it. So the bubble wrapped itself around me and I was alone with me and God and that's when He told me again - 'Be still and know that I am God'. 

I put myself to bed at 1.30 and lay curled up in the foetal position feeling very sorry for myself physically while my mind was going crazy on steroid meds. So I lay there consciously separating the mind from the body and just letting the body enjoy the sound of the raindrops.  I woke at 6 so somewhere in there my steroid mind slowed down and gave me rest.

My taste buds changed this week after chemo. It's a shame because I have been so good at drinking 3 bottles of water a day but now it tastes like plastic even out of a glass, so am frantically trying to find something that will hydrate and flush the chemo out and also quench my thirst. Cranberry juice is winning at the moment at 3am but that's also when I am wanting porridge with brown sugar! Also trying the suggestions in the cancer booklet - eat with plastic fork, have lime juice before food, spice up meals.  Got to be some merit in their suggestions.

A gift package from my colleagues

I also put up a post about bath louffa/sponge which a lot of you have read. Hope it made sense and got you thinking about putting into practice.

After a beautiful weekend at the Mount last weekend with Debbie Forster, I am so looking forward to spending time with Wayne. This week I have been asleep by the time he has got home so have lost that connection and sharing our day. He has no gig this weekend (he is a guitarist/musician) either so we will just enjoy our time together and be lazy and remember how blessed we are to have each other.

Thanks again to my prayer warriors and well wishers. I can't stress enough how important you are in this experience.

Check your breasts

10/04/2014

My suggestion for what it's worth...

I don't know if I mentioned in previous posts that I was between mammograms when I discovered the breast cancer lump.

I have been using a bath louffa for a few years so had not actually "touched" skin to skin and done the soapy breast examination. When I did put aside the louffa, the lump was very obvious.

Another recently diagnosed friend who I spoke to this week, said she had a similar experience. She dropped her louffa on the shower floor and couldn't be bothered picking it up. She lathered up and found her lump as well.

My suggestion is - put aside the louffa, facecloth, whatever you use and once a month, lather up and examine your breasts, especially between mammograms.
And guys, if you are reading this...do I have to spell it out!