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  • All about Gertrude

    Gertrude is the name we decided to call my cancerous breast hence the title of this blog. Although I had to keep my breast through chemo and radiation due to the nature of IBC - once it 'blew up' it no longer looked like my breast and I couldn't wait to get rid of it. Calling it Gertrude was a way of seperating it from myself. This main page is where I write about the general goings on that relate to Gertrude, there is another page that are more a diary of treatments etc This blog is a public blog so although I am being very honest about my battle with Gertrude I have "changed names to protect the innocent" - because everyone can see it if you write comments on the blog pages please use the same abbreviations for other family member or friends that I do. Please feel free to ask questions if you want clarification because then other people who might have been wondering the same thing can read your question and our answers.
  • Abbreviations

    OH- Other Half (Hubby), OD- Oldest Daughter, MD- Middle Daugher, YD- Youngest Daughter, SB- soulja boi MD's fiance in the army (now ex fiance), OD's R OD's partner, BS- Breast surgeon whose initials just happen to be BS as well, BC- our GP (family doctor), Dr H- my medical oncologist, all other friends family etc will be referred to as initials etc
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  • SUSAN’S ARMY

    No Princess Alone button

Decisions

I had my second 1 0n 1 counselling session with the Cancer Society Counselling service – she was surprised at my mood – I was a lot more bubbly than when she last saw me.  This is in part due to the fact I have made some decisions about how I want to move forward.  Part of my problem lately is how to move forward with life in general with realistic expectations of what my life could be like from now on.  I do have a very real fear of recurrence which is justifiable with IBC but it is how to move forward , hoping that recurrence doesn’t occur but not to put everything off or be totally consumed by the fear or totally ingnore it.  The reality is I do have to live with the threat of recurrence but not let it rule my life.  I have been working a lot in the past few weeks and the repetitious nature of the lotto terminals is definitely not good for my niggles.  I have almost complete pain-free range of movement back in my right arm/shoulder (Only a couple of centimeters/less than an inch differrence in reach between left and right arms – I have my pink pilates program to thank for that) but I have pain/swelling and tenderness in my chest and in my collarbone.  Which gets worse with arm shoulder activity – especially work.  This has made me think what I want to do next year.  I have decided to go back to university and study for a Bachelor of Social Work or similar.  I have worked in this area in the past voluntarily with my special needs support group work, and have thought about doing it in the past but when YD was still at home I knew the stressful workload of studying and working in that field as well as dealing with YD was not the best option for me.  Now that YD has left home , I think the time is right for me to pursue it, and I think with my experiences of the health and disability sector first with YD and now with my own personal health experience puts me in a good position to help others.  If  I have to deal with ongoing health issues ( recurrence or other issues arising from Gertrude) I can look at doing less papers one semester or taking a semester off.  but it means at the end of 4-5 years I will have got through the danger period for recurrence and also have a qualification in the field I wish to pursue.  This has made me feel much more at peace with what the future might bring.  I would like to believe I am going to live for the next 30 years and this will set me up for a productive use of those years – at the same time, allowing me flexibility to deal with what ever may come.  I believe this is the best decision I could make at this time.

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Dancing in limbo

‘Dancing in limbo’ is the name of the book I am reading at the moment – subtitle ‘making sense of life after cancer’.  In one of the very first chapters it addresses the ‘high’ or the ‘unusual calm ‘ during treatment and the subsequent crash that may follow.  I read this book and recognise myself so much in its pages. 

Dancing in limbo is also the state of my life at the moment – I am waiting on a CT scan appointment  and the subsequent all clear from my oncologists before I can do the Cancer Society ‘moving forward’ course.  I am also wanting to book a trip to Christchurch to see MD and take YD with me for her first plane ride but I can’ t make the bookings before I get the appointment for the CT scan.  I already know that my follow-up oncologist visit will be the 6th October. My scan is supposed to be sometime in the next couple of weeks but as yet I have no appointment.  I was hoping to go to Christchurch between the scan and the followup appointment. The public health system is weird in NZ that my cancer treatment is funded at Auckland Hospital but my CT scan is funded through Middlemore Hospital so my oncologist had to refer me there for my scan

While I was writing this post I decided to take the bull by the horns and ring Middlemore to see if my scan had been scheduled yet. It has been but not until 15th September – you’ve gotta love their interpretation of first week of September LOL  which means I can now get on with the bookings for Christchurch Yay!!!

I have been working quite a lot the last couple of weeks just filling in for people while they are away.  The repetitive movement of using the lotto terminals is not helping my ‘niggles’ and I am unsure of whether I can return to a more fulltime position there.  I am not looking at making any decisions about that til next year.  The rest of this year is going to be more about my general health, fitness and well being.  I have a couple more sessions with the Cancer Society counsellor planned as part of my mental wellbeing plan.

on a light hearted note

I met an online friend “T” today who has been travelling the same road as I through breast cancer country.  She hasn’t had Inflammatory Breast Cancer but has had another aggressive form of breast cancer that required her to have chemotherapy before surgery.  She has just had her surgery a few weeks ago.  It was lovely to meet her.  

While she was here a parcel arrived from the states – OH’s Cousin S had ordered me one of the gotcancer.org t-shirts I love.  I love these t-shirts as they let you have a sense of humour about the journey cancer takes you on.

my gotcancer.org t-shirt

my gotcancer.org t-shirt

close-up of t-shirt slogan "no they're not real (in smaller print 'my real ones tried to kill me')"

close-up of t-shirt slogan "no they're not real (in smaller print 'my real ones tried to kill me')"

As I was saying to T there is probably some company who wouldnt appreciate me wearing the t-shirt so I will pick my moments to wear it – I am also going to order myself another t-shirt from the site.

I also thought in this post I would put an updated photo of my “cancer bead” bracelet

from left to right: radiation bead, hospitisation due to infection bead,diagnosis bead (breast cancer ribbon obscured),  I heart(love) U bead (YD’s xmas present), finishing taxotere chemo bead,  surgery bead, NED result bead, trip to Australia bead and the butterfly is the last one that I have just got to signify the end of my herceptin treatment.

my cancer beads

my cancer beads

I have decided that once I have had my CT and followup oncology appointment I will get myself a “getting through first relapse scare” bead and then hopefully wont add any more to it until April next year where it will be an NED (no evidence of disease) anniversary bead

To worry or not to worry…

As some of you may be aware – I had a bit of  a scare a couple of weeks back.  With going back to work I had started to have a few niggles in different parts of my neck and chest area on my Gertrude side.  I dismissed them as scar tissue etc needing to settle down after the extra exercise but after talking to people and eventually being told I should be ringing the hospital to see what they think, especially as one of the nodes above my collarbone had popped back up (it has since subsided to the point they can’t feel it but is still tender to the touch).  I hadn’t been too worried about the pains at all but after going through several channels then talking to an oncology registrar who said they needed to see me within a week – it started to freak me out that it was a recurrence or a spot of cancer that hadn’t quite been got enough the first time.  They couldn’t fit me in until today so I have been being a bit on edge until now. 

The good news is that they are pretty sure it is not a relapse or recurrence of the cancer but they want to do a CT scan just to make sure.  I am reassured by the fact that the aren’t rushing me into have a scan tomorrow rather -just wanting me to get it done in the next month.  It is more a precautionary than a necessary measure – I guess you would say. 

The other two interesting bits that I liked about the oncology appointment today were:

 1)that he gave me much better guidelines to know when to be worried and when not to be, and who to go to regarding the niggles, depending on where they are and severity of them.

2) they are considering my suitability for a clinical trial that is a follow on from my herceptin treatment.  They are looking at an oral chemo drug(taken in tablet form) that is taken for another year after herceptin has been taken for a year as another form of  Her1/Her2 inhibitor to stop relapse/progression of the cancer. I didn’t take my usual notebook so I didn’t write the name of the drug down but if I do go on the trial I will let you know. I’m willing to take part in anything that may stop the cancer coming back.  They will get back to me when they are starting the trial as to my suitability.

This week definitely feels weird as it is the last herceptin treatment this Friday and if I hadn’t had these niggles needing checking out I wasn’t supposed to see the oncologist this week – I was supposed to see them 1st of September as the end of treatment follow up.  I had expected this week to feel more final but now with this scare, and the scan coming up, as much as I am still positive it doesn’t really feel like I have finished treatment properly.  I have my next follow-up with the oncologist at the beginning of October by which time the will have the hopefully good results of the CT scan.  I think that is when I will feel more finality to the end of treatment, even if I do go on to participate in the trial.

I am joining the local breast cancer support group, not so much that I need support per se, but I need to know more people with breast cancer who have been through the same thing and share common experiences that know exactly what I am talking about.  They are having a pot luck dinner meeting tomorrow night where the husbands/partners are invited too and I was pleasantly surprised that OH said he would come (this will be the first time I meet them).

My trips (one with YD -by plane and the other with OH by car) to visit MD will have to be timed around these other appointments but as I said to her I should have the appointments within the next week or so and then i can start booking things. 

Those trips and other things like the “moving forward” course and just generally focussing on getting my general health and fitness up will be what keeps me busy for the rest of the year.  I am now looking to next year and trying to figure out what plans to make for that in regards to work/family/health and happiness and the balance I want.  Not sure what I want yet but I think time and distance after treatment will help with that.

a year ago

Exactly  a year ago today I was sitting in a doctors office being told I had cancer – not just cancer but a rare, aggressive “this may kill you” type cancer.  WOW and I’m still here!!

Part of me can’t believe its been a year.  I still remember sitting in that office as clear as day. 

I am glad I have been busy with normal life things so as to not dwell on this anniversary too much.  We are getting ready for a garage sale of a lot of our old stuff and a lot of stuff MD left behind with her move.  I worked 3 days last week fill-in shifts at my old job for the person that is away on holiday.  I also worked this morning.

I am still having a lot of ‘fun’ with the recognition factor.  I am surprised at the people who do recognise me and those that have known me for years that walk past with no hint of recognition.  This has been more obvious with me going back to work.  There are people who were my regular customers that recognise me straight away and others that assume I am some new person starting.  If I see someone trying to figure out who I am I usually give them a few clues and once we start talking they click but those who are completely blank I dont even bother about. 

I think the trouble is that for many people the recogniton factors for me were my brown curly hair and my rather large bust. Now that I have neither of those they think I look vaguely familiar but because I have neither of the old ‘instant recognition factors’  they dismiss me as someone who vaguely looks like someone they know. Well that my theory on it anyway.  As long as my close friends and relatives know who I am, I am not too worried about losing a few friendly aquaintances.  I had one friend who hasnt seen me for a year or more tell me today that I was looking much better than she expected from  what she had seen on my blog – she says the pictures don’t do me  justice – but that I dont look like the me she remembers

I was supposed to start a “Moving Forward” course  done through the Cancer Society but in a phone call today they have postponed me doing it until I have had my last herceptin and have the all clear from my doctor to do it.

I can do the course in October but am going to see the counsellors for some 1 on 1 sessions before that as I feel I need to do something to get myself “moving forward”  I am feeling at a bit of a loss what I want my new reality/normality to be.

On the bright side today is also the anniversary of OH and my first date, 27 years ago, when he was 27 and I was 19.  I wonder if we will get 27 more?!

Overdue Travelogue blog

Well I know some of you have been waiting a long time for this

Saturday, 20th June

Left for the airport at 4am in the morning.  Yikes!! to catch a 6.30am plane.  We arrived in Cairns approximately 10.30am flight over was 5 1/2 hours a little long in cattle class with not enough room to stretch in seat but time went fairly fast.  I must admit these something rather decadent about drinking alcohol in the departure at 6 in the morning.

We picked up the hire car after a bit of a mixup at the airport they had us down as a domestic arrival not international.  It was faster for us to go to the domestic terminal than for the;m to come meet us.  Drove to Palm Cove and arrived there at 11.30.  After we had explored room and amenities and got changed out of our winter clothes we went off and explored Palm Cove, walking from one end of the Esplanade to the other.

Had lunch at a place called Cocky’s – salt and pepper prawns and shrimps

Came back and wandered around the resort – had my first cocktail by the pool.

Had dinner at Vivo which became our favourite retaurant – lovely food, then early night as I had not slept at all the night before.

 

Sunday 21st June

Got up at 7.30am and went to Port Douglas (approximately 40 minutes up the Captain Cook Highway) to do “Breadkfast with the Birds” at the Rainforest Habitat. Spent an hour having buffet breakfast with bird entertainment – you are only allowed to feed the lorikeets grapes but the funniest thing was seeing an ibis being very opportunistic and stealing a sausage while someone’s back was turned and fighting with another one when they had managed to filch some bacon.  After wandering around Rainforest Habitat for a couple of hours seeing more birds, wallabies ,crocodiles and a snake – we went into Port Douglas proper.  the sunday markets were on and I could have spent a lot of money but bought myself a new top and some cinnamon coated nuts (the cinnamon coated cashews were particularly yummy) and some dried pineapple.  We then wandered back along the main street buying a hat for OH and a smoothie for lunch – we were still too full from buffet breakfast to eat anything.  Left Port Douglas about 3pm and came back to Palm Cove where we went to Vivo (again!) and had their Tapas and happy hour cocktails

click here to see photos of our first two days

Monday 22nd June

We only had a muesli bar for breakfast as we had a 7.30am pickup by coach to take us to our Green Island tour.  the coach took us to Cairns’ Reef Terminal where we boarded a Big Cat catamaran and collected snorkel gear for our time on Green Island.  While doing the safety demo for life jackets the guide was miming actions to the announcement.  She added miming signing the cross and praying before pretending to leap overboard.  It was very funny.  Arrived at Green Isalnd and was very surprised to see underwater observatory on wharf was still there – the last time I had been to Green Island was 28 years ago (1981). the observatory has been there since 1954.  I went down and had a look for old times sake. It wasnt as good as I remembered it.  (mind you we’ve been spoiled by having Kelly Tarltons and places like that since then.)  and this was also after having been snorkelling for 1 1/2  hours and seeing other fish up close.  We had buffet lunch aboard big cat and then wandered round the island The have put a lot more amenities on the isalnd in the past 28 years.  When it was time to board boat back to Cairns they did afish feeding off the back of the catamaran – we saw much bigger fish htan we had while snorkelling.  We arrived back to Cairns approximately 5pm, back at Palm Cove approx 5.30

We had takeaways for tea.  burger and chips for me and barrimundi and chips for OH from Pete’s Place.

Tuesday 23rd June

We decided to have a rest day and just stay at Palm Cove for the day.  We had breakfast at Nunu – one of the restaurants just by our hotel.  Pineapple tart with pina colada ice cream for me.  Our waitress’s Mum lives in Auckland near us so that was amusing.  I did my ‘Pink Pilates’ in the resort gym then we went ‘grocery shopping’ and picked up postcards and stamps at post office.  Went for first swim of the day in the lagoon pool and swam up to the pool bar and ordered a cocktail – just so I could say I did!

For lunch we had cheese, crackers, pawpaw and juice on our  balcony – we had to by a plastic knife for 10c from the supermarket as our room was tea and coffee making facilities only.

afterlunch I swam in the rainforest pool, which was freezing compared to the lagoon pool, then swam in the heated pool to warm up.  I was amazed at how much freestyle (overarm) swimming I could do

Dinner that night was at El Greko – where we had Zorba’s feast which is a little bit of everything -really good value for $35 each

Click here to see photos of 3rd and 4th days of our holiday

Wednesday 24th June

Another early start being picked up by coach for our Kuranda trip.  We were taken to the Skyrail terminal at Caravonica.  the Skyrail is a gondola cable ride that stretches 7.5 kms from Caravonica to Kuranda.  It has two stations on the way at Red Peak and at Barron Falls.  As you go up to Red Peak you look out over Cairns and surrounding area – when you are nearly at the top you can look out to see and see where the Great Barrier Reef is – the water is quite turquoise where the reef is.  Absolutely gorgeous views of the rainforest canopy as you travel along.  At Red Peak station the cable way that bought you up the hill stops and you hop off your gondola.  they encourage you to go for a short walk through the bush which we did then you hop into a gondola on the next cableway.  At Barron Falls Station the cable way carries on through the station and you have a choice whether to hop out and go to the falls lookout or just carry on straight through.  We decided to hop out.  The final leg of the journey is to the village of Kuranda.

When we got to Kuranda we took the shuttle that drives around the town showing you all the attractions then lets you off at the markets at the other end of town.  We wandered through the markets  and bought some things for the girls and some aboriginal paintings for ourselves.  We visited the Australian Butterfly Sanctuary where the butterflies were amazing and the Australian Venom Zoo where we both posed with a snake.  We had a quick lunch and then it was time to head back to the train station (beside the skyrail terminal) to catch the scenic train back to Cairns.  This is another journey I had done 28 years ago (the Skyrail didnt exist back then and we had gone up and down to Kuranda on the train) – more glorious scenery with stops at the Barron Falls lookout on the opposite side of the gorge to Skyrail.

Got back to the resort about 6pm and ordered room service as it was our last night at the resort.  We packed our bags for departure the next day.

Thursday 25th June

OH didnt want to get out of bed this morning.  He didn’t want this part of our holiday to end.  He had loved being at Palm Cove.  After we had breakfast, we went for one last walk along the beach,  then it  was packing the car up and heading south to Townsville. 

This part of the trip we had added on to the original trip I won (we had also added on the Green island, Kuranda trips and the rental car). It had always been one of my travel plans to get back to Queensland ( I had gone over in 1981 for my sis SM’s wedding and I had gone back in 1983 for her funeral when she died in a car accident)  This part of the trip for me was more personal as it gave me a chance to visit SM’s grave for the first time since the funeral. 

Half an hour south of Cairns I suddenly realised we had left our winter coats in the wardrobe at the resort.  As we were planning on returning to Cairns on the Saturday evening (Palm Cove is about 1/2 hour north of Cairns) Luckily I had my cell phone on global roaming and could ring the resort and ask them to put them aside for us to pick up on Saturday.

We stopped in Innisfail for lunch and bought some flowers.  The lady who owned the flower shop was an Australian-born Maori so she was very happy to see someone from NZ. 

We then headed for Ingham cemetary where I spent some time with SM. 

After visiting the cemetary I took OH on a tikitour of all the places that I had been to in 1981 out to Forrest Beach where it was hilarious that the house my sis T had been living in in 1981 was the only original house left.  We also went out to Lucinda to see the long sugar loading wharf that goes out 5km . Its where all the raw sugar from the sugar mills gets loaded into big sugar tankers.  On our travels OH had seen several different facets of the sugarcane industry.  He hadnt quite realised how much it dominates that part of Nth Queensland. 

We left Ingham and headed for Townsville arriving at Seagulls resort about 6.30.  We were quite tired so had dinner at the restaurant.  We were quite dumbstruck by the decor of this place (you need to look at photos to understand what I mean)

click here for photos of 5th and 6th days of holiday

Friday 26th June

We got up and went to the Stand in Townsville for breakfast.  This is a promenade they have built along the waterfront with restaurants pools and playgrounds for the kids, it was very pleasant to sit there with our breakfasts and coffees and be over looking the water with views to Magnetic Island.  We made plans to meet up with my neice A (my sis T’s oldest daughter) and spend the day with her.  We met up in the centre of town and spent the day shopping and generally spending time with her and meeting some of her friends.  We ended up going back to the Strand to another restaurant for dinner.

Saturday 27th June

Time to leave Townsville and head back to Cairns.  We had breakfast at Frosty Mango (halfway between Townsville and Ingham)  We stopped off to look at the Tyto wetlands in Ingham – would have loved to have spent longer there.  I paid another visit to SM’s grave then we headed north.  A had told us if we had time to go to Paronella Park on the way back.  This unusual tourist attraction is on a side road between Tully and Innisfail but well worth the detour.  It was originally built in the 1930s by a Spaniard that had made money in the sugarcane industry but got ruined by floods in 1946.  The ruins were opened as a tourist attraction in the 1990’s.  My photos don’t do it justice – it is really quite a magical place.  We had a lovely devonshire tea there for lunch. 

We arrived at our last night’s accomodation All Seasons Gateway Cairns, on the south side of Cairns, quickly unpacked and set off for Palm Cove to retrieve our coats as we knew we would need them as soon as we got back to NZ.  We had hoped to have dinner at Vivo but it was booked for a private function so we went to another of the nice restaurants in Palm Cove, the Casmar .

click here for photos of 7th and 8th days of holidays

Sunday 28th June

We had to be at the airport by 9.30am after dropping rental car off so we had breakfast there.  We had repacked the suitcases with things in their appropriate places for travelling the night before so It was jsut a matter of getting up and getting dressed.  At customs/security we sailed through but quite a lot of people were getting stopped and asked to remove their belts and shoes etc after going thrugh check point. We  flew back into Auckland to lightning and thunderstorms – OH and I looked at each other and said lets just hope on anther plane back!! LOL