Sex and Cancer

08/12/2014

Big thank you to Tania for plying me with wine after a visit to GP today to talk about sex.  It's one of those taboo subjects that doesn't get talked about when going through cancer.  Now I am out the other side we thought yay, it's all go.  But unfortunately not.  So if you don't want to know, stop reading now.  You know I am all about education so here goes...

The hormone pill I am on thins the vagina wall which makes for painful sex.  I can change to another hormone pill that thickens the lining of the uterus but can cause cancer. I can also have an estrogen cream which may help but has to be limited to six weeks as we don't want this to produce estrogen and feed any cancer.  The GP asked me is sex important to us, if so, then it is quality of life I am looking at.  He rang my oncologist and the above is what they could come up with.  If this doesn't help then where to from here.  So cancer is teaching me something else now and throwing me off centre.  You think when you have breast cancer it's all about the boobs, but alas no.

I came home to Wayne and the darling just said we will learn about different intimacy and loving.  Gotta love this guy.  He is being very patient.  When I was undergoing chemo they gave a suggestion not to have sex for three days after treatment.  We waited five days and still Wayne got chemo burns/welts in and on his private parts so something to consider...

So another lesson today...Do I want to die for sex...I don't think so!  

Round 12 - We're done

21/09/2014

So it is now over a week since I finished chemo(04/09/2014).  On the day of my 12th treatment I was quite emotional - firstly, because it was the last one; secondly that I came through it relatively unscathed compared to others, and thirdly, I was saying goodbye to my 'safety net'.   

It was another rowdy session on the last day (04/09/14) with Wayne playing guitar and a sing-song ensued.  Elaine, the head nurse, gave me a hug when I finished and wouldn't let me go, you know, one of those special hugs you get from time to time.  That made me cry more.  We left with an almighty sigh.  So the next few days were resting.

Strange things go on though because you know you have finished, you think, right, let's get on with life again.  Only to come to a full-stop as the body goes whoa, hold on a minute, you only had chemo four days ago. Give the body its rest it needs.  So some adapting of the mind and re-focusing is in order to slowly get I to the 'new' normal.

Wednesday we headed up to Hamilton for radiation appointment.  All along my surgeon has not wanted my lymph nodes under my arm radiated as he believes he took enough margins and I was definitely going to get lymphedema of the left arm if I did.  Radiation experts have said no, that I should have it done, with 30-60% likelihood of lymphedema. So that was talked about at some length.  

Then I had planning scans.  Talk about tools of the trade. I felt like I was on a building site as they measured my body against the bed from every angle so when I get radiated they have me in exactly the same position each session.

Due to where the lump was in my breast, it is very close to my heart, so I had to have a block put on my chest (not sure why) and then breathe in and hold for 20 seconds to see if my heart moved over enough to not be affected by radiation beam.  Now they compare my normal breathing and held breath scans to come up with a plan for me in about 10 days time.

The good thing though is that the radiation consultant phoned me the next day and said he had spoken to another surgeon and they believed my request not to radiate under my arm is reasonable so looks like we are in the clear there.  Will just do my left breast and clavicle area.

We popped into the cancer lodge which will be home for five weeks (except weekends) - wow, very flash and 5*.  The staff and volunteers were lovely, though I did find it hard seeing sick people around me and said to Wayne I will need to escape.  No disrespect to the patients, just found it confronting en masse.

Friday we had oncologist appointment in Rotorua.  Another different consultant.  Have never had the same consultant twice yet!  

He then explained the next step is hormone treatment for the next five years to block the oestrogen receptors that go looking for cancer cells.  He explained that scans can pick up to a 1mm size cell but sitting inside that cell can be one million cancer cells.  So from the scans that were taken they cannot detect any cancer cells up to the 1mm.  My portacath will stay in for a year (just in case) and that will need to be flushed every four weeks.  After radiation I get handed back to my surgeon who will monitor me for the next so many years with mammograms and if I notice any aches pains that need further exploring.  Also oncologist is going to watch me for next year.  They said that if it comes back it will be sooner rather than later.  Who knows really...

So now I have a few weeks off, oh no wait, another radiologist appointment for planning by phone or Hamilton visit and a bone density scan.  Appointments just keep coming.

So I made it through chemo, folks, with your help with laughter, phone calls, texts, Facebook comments/likes, surprise gifts, food - all of these things helped Wayne and I get through.  You guys stayed with me for the long haul and I can imagine it has been a long six months of seeing me post all and sundry.

It has been hard, can't deny that, but I have had it easy compared to others.  I am proud that I managed to hang in there, still work 90% of the time, still put on a smile and just let it all out on this blog.  Thanks for putting up with my ramblings.  Some were too hard to read I know and some people felt I shouldn't be telling everyone everything.  Well I have learnt I had  to do what worked for me to get me through this, and writing and photographing my experience has been instrumental in this.

Of course my wingman Wayne has been unbelievable.  I can't thank him enough but he knows that.  We have had lots of laughter and tears along the way together and it has only brought us closer together.  And of course Luke and Christine's prayers and love from afar have also contributed too.  Luke said today he was so proud of me for all I have gone through.  Love my son so much.

So after all this we decided we needed some fun.  Being from a Mini crazy family, we talked about when/if I died, Wayne would get a Mini and a Gibson guitar.  Fair enough, but this week I decided I want to enjoy a Mini too and while I was alive!  I can now say I have ticked that off my bucket list.  We now (with the bank) own Hazel.  Who would have thought a week ago I would be driving a Mini Cooper.  Kirsty gave me a model Mini for finishing chemo and said visualise and you will get it one day and Voila!

So 1st October I head to Hamilton to commence radiation treatment.  All the more fun now of course driving Mini Hazel to and fro.

Congratulations to my cancer buddies Tania and Joan who have completed their chemo rounds too.

Thinking of those who are watching their loved ones go through this too.

Blessings Facebook Friends - love you guys and THANK YOU

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. 

Round 10

13/08/2014

No news is good news so they say, and that's pretty much what I deliver today! 

Round 10 chemo last week was "same old-same old". No new surprises or anything to write about...oh, no, hold on, maybe when they forgot to switch the clamp off after the 1st flush, and the flush and the chemo bag pumped into me together. Don't know if that means I have had a watered down version of chemo...I didn't ask. Still having same side effects so don't think so. 

The chemo unit was all go. Honestly, there was a queue for the chairs and only two nurses. People lined up and waiting. Can be a bit daunting at times. Observed a man who was in the chemo unit from opening time to closing time and then was ushered upstairs to ED to finish the treatment...there weren't enough hours in the day at the unit, and he had to do that for 5 days. Our heart goes out to him and the road he's on. My experience is a doddle compared to his.

So we are on the home stretch for chemo. Have two to go 28/8 and 4/9.

Trying to coordinate the next step for oncology and pre-radiation appointments is proving difficult. For some reason, and after speaking to four different people and going between departments, we still can't coordinate an appointment on one day in Hamilton. It's a work in progress. One thing you learn on this trip is patience and perseverance and keep talking to people so they don't forget you.

I guess I really should learn to curtail what I share with my work colleagues. Standing around the water cooler yesterday, I expressed the excitement of a decent bowel motion and what it meant to me to my male colleague. He was very kind and made the appropriate comment...oh I love cop humour and that they put up with my verbal diarrhea. This is how I handle my experience, by letting it all out and writing about it. Wait till I start doing video downloads on YouTube...only kidding!

Right now my life is quite structured around work, rest and sleep. I am not one for answering the phone now, it is all too much energy to give out after a day's work. My weekly highlight is looking forward to my lunch dates with Wayne on a Saturday; other than that, life is pretty quiet and I like it like that. I realise I can't cope with too much physically. I'm hoping that 5 week 'boot camp' (radiation) in Hamilton will get me out walking and building up. I get so breathless just walking around town. 

Never ever thought this is what I would be experiencing when turning 55. Maybe one day I will see this cancer experience as a turning point in my own personal growth and use it to be able to give more out to others. I hope so.

Thanks this week:

A lovely gift from England from three special children and their mum, who I have never met but heard what I was going through and wanted to send me something practical - a homemade tea mug and English Breakfast tea. How special is that.

Bon voyage Lynn - safe travels beautiful cuz

And yay...Luke is coming home for the weekend!

All Clear

01/08/2014

Today I feel 'alive' for the first time in six months since diagnosis. I now have confirmation that my cancer is not there today, that the chemo is working, that is hasn't spread anywhere else and that we are on the right track. Whoever would think chemo would be my friend (the Hemsley family told me that and now I understand). It may knock me sideways, up and down, but today after nearly three weeks off chemo, I feel alive! So there is always a positive somewhere amongst the crap.

I start chemo again on Thursday with two to go, possibly three if we count the one they cancelled while the investigation went on.  

The oncologist apologised for causing me concern when there was nothing there, but I was wrapped to get the scans and confirmation all is well. Wayne said it was his best birthday present ever - and he meant it! So love that man...❤️

Surprisingly to me, radiation treatment now doesn't seem so daunting. I don't know why, it is just sitting more comfortably with me. We have a visit with the surgeon, Mr Truter, on Monday. Will be interesting to see if he got an answer to the letter he wrote to Radiology about not doing radiation to my lymph nodes as he said I would end up with lymphodema in the left arm. He reckons he got it all and when you have scans that say you are clear, well, it sets you thinking. Watch this space.

So today in Taupo it is a stunning winter's day: blue skies, from the kitchen window I can see the snow on top of the Kaimanawas glistening back at me, the lake is calm, no wind...wow!

It is so peaceful. I just wish we could bring peace to other parts of the world and they could experience peace and calm and see how much better peace is than fighting each other. 

This week pray and/or send positivity for the children who are suffering in war zones across the world. The 6 o'clock world has shown some pretty horrific sights this week and being a mother, I can't imagine what they are going through trying to protect their babies.

A Bend in the Road

26/07/2014

My chemo was cancelled this week due to some odd symptoms arising, therefore an appointment with the oncologist consultant was arranged. 

Off to Hamilton today for that consult with Dr Kennedy who we haven't met before. The waiting room is still like a bus station. From all four corners come consultants who call out a name. You have to be vigilant because you don't know where you are being called from.

Dr Kennedy was lovely. He brought up my notes, explained what he knew about my case, asked me my symptoms, examined me and then lay out the plan for next week.

We identified that my neuropathy in my feet/legs has got worse since the change of chemo concoction.

Re the symptoms I explained to him, he said if I went to my GP with my symptoms, the GP would say I had inner ear vertigo, inflamed bowel (not ovary that I thought the pain was), and pulled chest muscle.

Because I had lymph nodes that were cancerous (13 of 29), my symptoms are a 'red flag', so he needs to eliminate brain cancer (vertigo), bowel cancer (inflamed bowel) and chest bone cancer (pulled chest muscle). 

As he explained all this, he drew his chair in very close...hello, this is serious I thought. He then said to Wayne "No more black humour for this lady, Wayne, no more". Gulp! I said "Are you serious, that's how I get through". "No, no more, we need to look after you", he then grabbed my hand in his two hands and wouldn't let go. Okay, this needs to be taken seriously I think he is trying to tell me. Stop this flippancy.

So today in Hamilton I did bloods to check for "any embers burning" (his words), and then next week have CT scan and MRI in Rotorua.

The positive from the scans is that one way or another I will find out if the chemo is working at least.

If it comes back finding something, then we will deal with it from there. I admit I am in denial right now (like when I first got diagnosed), but do feel better prepared and educated if the scans are sinister. I know the waiting game now is just that. Enjoy the moment while we wait.

So I am appreciative of Dr Kennedy not poo-pooing me, I get time off chemo for a while and I will find out if chemo is working sooner rather than later.

All part of the process...hop on board, we are off on another ride.

Round 9

01/08/2014

Monday was a catch-up appointment with the surgeon. This was the first appointment Wayne didn't come to as the battery was flat on the van. He has done so well being there at every one so far.

Mr Truter is more than happy with how I'm going, thrilled the scans were clear. He is still adamant that he doesn't want my lymph nodes radiated and insists I get Radiology to ring him about they start.

I went to see a Cancer Counsellor on Wednesday. I had actually booked six weeks ago, which was when I thought I needed another perspective on things and now six weeks later I have it sorted in my head, but the appointment came up so I went anyway.

It all sounds so clear and simple when you start talking to a stranger. They don't know your story so I found myself expressing myself in a way I possibly wouldn't with friends and family (though re-reading my Facebook blogs, you guys do get it both barrels. There's not a lot I hold back.) What I do hold back I probably do for fear some may think I am being silly, fatalistic or in denial, or too religious. So it was useful to go along and get some stuff off my chest. I don't think I changed my view on much, just realised how far I have come and hoping this experience does change me for the better, that I don't forget what it is/has taught me and that I am more empathetic and compassionate and encouraging to others.

So Round 9 arrived on 31/07/2014. As an upshot of missing Round 8, due to holding off while more tests were done, once they were confirmed all clear, we started up chemo again this week. I think I have one more to go next week, but if oncologist says he wants another one for round 8 that I missed, well so be it. I am going to find out early next week though because I would want to celebrate on the right day. How I will celebrate I'm not sure - a big yahoooooo might have to do for a few days until body catches up with mind. But no doubt you will hear the yahoooooo at your house.

I wasn't in the 'naughty corner' this time so that was a good start. They were taking a long time to start the process so Wayne went and checked if I had been 'bad' again. No problems they said. So Wayne went off to the music shop while I waited and waited. 

Three-quarters of an hour later I asked what the hold up was, oh just waiting for email from your oncologist to say go ahead. Dah - you guys rang me to set the appointment because he said go ahead. Oh, okay then...and away we went.

Pre-meds had me nicely wasted in no time. I had the flush, two syringes, another flush, then the Pinot Gris chemo. Wayne returned and we noted I had 37 minutes to go of the hour long Pinot Gris process, only to have the nurse come check the machine and find I wasn't having any chemo pumped into me! Either the machine malfunctioned or it wasn't set up right...so we had to start again.

Bugger this, I thought, I need a pie! So Wayne delivered accordingly. What Andrea wants she gets at this point. So here I am sitting have chemo eating a pie. And it was delicious. 

We finally got out at 1.30 instead of 11.30.

Sleep had me in its arms on the ride home and straight to bed. Wayne had a gig but he kindly came home and checked on me between a break to make sure I was okay. How sweet is that. And sleep kept me busy most of today too.

Thank you this week to:
My angel - completing Dry July and raising over $800 for cancer research
Cousin shouted dinner out at Thai before she heads abroad and early birthday dinner
My clever friend who gave me a beautiful Kelly Rae Roberts book called "This Little Light of Mine" in my letterbox when I got home from chemo - so kind 
Prayer warriors - front and centre again !

Blessings...

Round 7

13/07/2014

Tuesday arrived and what a foggy ride over. We arrived at the chemo unit for our 9.30 appointment. There are 12 chairs which get filled up pretty quick from 9.30 onwards. The seeing eye dog Alvin, black Labrador, arrived with his owner. Alvin is always a great distraction.

When I arrive each time I am given a clipboard with a list of symptoms I have experienced since the last chemo like nausea, dizziness, constipation, ulcers, depression, etc. I manage to only tick a couple because my run has been pretty smooth. The sex issue (last blog) was discussed and apparently because we are so open and honest, they are going to do some more research on what we experienced! Goodness, mind boggles!

I did mention to Rachel that I had had pains along the centre breastbone and was breathless. It was decided that it could be my portacath so a surgeon was called up to check out. A lovely young woman arrived. Wayne expressed his 'concern' that she didn't look old enough. She promptly told him she started studying at aged 19, studying for six years, had a baby and was now 27. 

Anyway she had a look, decided she needed to talk to a senior and came back with the decision that the portacath had moved. It should be shaped like a volcano and mine was like a flat coin, so she would try and manipulate it. She did so successfully and so we were only held up by half an hour. The process went quickly as we were having so much laughter and antics between the nurses and Wayne that it just sped by. 

Wayne decided he was going to take my to Wendy's for lunch as I has never been. He sure knows how to make a girl feel special...

Home to bed for two days then back to work one day on a high and then collapse again Friday. Chemo sure has its way of not knowing which way is up sometimes. The bed and couch have been my constant for the last few days, and let's not forget Hugo's feline company.

This chemo to date I am experiencing dizziness (the world spins like I have never experienced. It doesn't spin once or twice, more like six times), breathlessness and ovary pain. Not sure why the ovary pain but if chemo brings on early menopause, could be related. Feeling the weight going on (3kg so far) but not surprising when Chocolate milk has been the craving this week (SOS to Wayne to bring some home at 10pm).

I'm feeling a bit morose and sad - why, when I only have 3 - yes 3, people - to go. I guess it is just the hormones going crazy again. This week's chemo is coming around so quick and then it will be 2! I'm nearly there.

I have started looking at the radiation aspect coming up about 8th September and decisions to make. My surgeon does not want me to have radiation to my under arm where the lymph nodes have been taken as I will 100% end up with lymphedema.

Lymphedema is caused by a blockage in your lymphatic system, an important part of your immune and circulatory systems. The blockage prevents lymph fluid from draining well, and as the fluid builds up, the swelling continues. Lymphedema is most commonly caused by the removal of or damage to your lymph nodes as a part of cancer treatment. There's no cure for lymphedema, but it can be controlled. Controlling lymphedema involves diligent care of your affected limb.

The surgeon has written to the radiation unit expressing he has got all the cancer out from that area. I'm assuming they are still going to want to press on and radiate anyway. And if he has got all the cancer out I ask, why radiate the location where t

he cancer lump was when he got all the margins there too. Anyway, another bridge to cross but it is playing on my mind.

I am getting a nice little carpet of hair appearing. Still undecided what colour it is going to come back as.