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    If you have popped over here from my facebook page could you please add comments in the blog rather than on the link on facebook itself. I dont want to worry YD unnecessarily Thanks. You can now use your facebook log in so you dont need to enter extra details if you like
  • 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

End of Semester – nearly!!

One semester down only 7 more to go.  It isn’t quite the end of the semester but Friday marked the last assignment due date, we have one more week of lectures and then exam study break and exams.   I am so pleased with myself for actually getting here. I got my assignment back that I had got my extension for around the 4th of May issue and got another ‘B+’ for that so I am really pleased that as tired and as sick as I’ve been that I’m doing so well.  I bought myself a bead for my ‘other significant things’ bracelets to celebrate reaching the end of the assignments due part of the semester because I do think it has been a major achievement.  Even though my last vinorelbine was on the 22nd of April I have still been experiencing the post chemo ‘blahs’ as I call them.  I’m still very tired , had a cold I cant seem to shake off and the peripheral neuropathy (nerve damage  due to chemo causing tingling in my fingers and feet) has actually seemed to be getting worse not better. This unfortunately is not unusual and can continue to get worse up to 3 months after chemo.  The other bad news about that is it never completely gets better.  Most of the periperal neuropathy I have got is actually from the original taxotere chemo regime the vinorelbine regime has just made it worse.  I have had major issues with getting to sleep because of the way my feet tingle in the night – which can’t be helping my tiredness levels.  So this week while Iwas having my herceptin I mentioned it and they have given me more medication to try and help me control it and get some sleep.  I rattle when I walk the amount they give me pills for everything.

It’s things like this that make me realise how much my life is never going to be the same.   I was no stranger to pills before all this – Neurophen was my best friend when I had a tension headache – but there was the fact that I controlled that intake and it wasn’t an every day thing.  At the moment I am on codeine and amitriptyline for the neuropathy, Omeprazole (Losec) for acid reflux (another chemo/post chemo side-effect courtesy of vinorelbine) and sometimes for the residual node pain in my chest tramadol and panadol (thankfully that one has decreased significantly since the vinorelbine stopped – I guess the pain showed that the chemo was working).  Oh how I’d love to go back to the days of not having to worry if I’d had my pills in the morning – I am by nature a forgetful creature and I pay for forgetting by suffering the consequences if I dont remember to take my Losec etc in the morning.

Our Samoa plans are on track we have just finalised our accomodation – we are staying in a few different places for example here and here.  I am so looking forward to this break – this has been another thing that was on my ‘must-do’ and I am so happy that OH and I are doing it as a celebration of me acheiving remission for the second time.  There are other trips on both mine and OH’s lists but we have said as long as I stay in remission we will put the other trips off until after MDs and possibly OD’s weddings which we will have to help pay for in the next 2-3 years.  Next year we also have to take YD on her postponed trip to Dreamworld – it is what she had wanted most for her 21st birthday but with me still in treatment -it wasn’t going to happen that way.  I feel I’m being a little selfish putting my Samoa trip ahead of her Dreamworld trip but it comes down to this.  If  I am not well enough next year (i.e. that Gertrude has come back yet again) OH with help from MD, OD or both can take her – whereas if I dont go to Samoa then I may never get to go.  As much as we hope we have licked Gertrude for good this time – it does colour our decisions around things like this.

I’m so looking forward to a weekend without assignments hanging over my head.  OH wants to go to the movies tonight and other than that I intend just relaxing.  I slept 13 hours last night.  Exam revision can wait!!

Celebration of Remission II

Otherwise known as my Indulgence weekend.

My celebration started on the Tuesday with the news that I was in remission for the second time – because I had the flu we limited the celebration on the day to having lunch at one of our favourite restaurants on the way home although OH had originally thought he would take me out to one of the more top-end restaurants in Auckland for dinner but I just wasnt going to be up to it.

My weekend of indulgence to celebrate remission kicked off on Friday afternoon when I went out for celebration drinks after Uni with a bunch of my classmates – AW, AE, AC, PC, EC, RC and RMS – thanks guys.

On Saturday morning OD and I went to the Indulgence show.  Where we indulged so much( facial and shoulder/head/neck massage, tastings of lots of dielicious foods both sweet and savoury, a cocktail and a glass of champers), that I was a little later home than expected to go on the second part of my indulgence weekend with OH.

We went to Mt Maunganui for Saturday night where I had got a very reasonably priced motel unit with views over the beach and spa bath included. Apart from a small problem with a malfunctioning dishwasher (which we hadnt touched may I add) OH and I really loved the motel and will probably stay there again at some stage.  The indulgence continued… walking to the restaurants we had dinner at my favourite cafe down there, Volantis.  I have always loved the ambience of this place with its metallic fishy artwork on the wall

 

After we walked back to the motel we had dessert that I had picked up at the indulgence show (some beautiful gourmet french desserts) a soak and a glass of bubbly in the spa bath then bed.

Due to the malfunctioning dishwasher I was awake early and caught the sunrise and before we walked to breakfast I had a walk on the near-deserted beach – which I describe as indulgence for the soul.

It was Mother’s Day and I proved what a good mother I am by taking time to visit the Tauranga bridal expo – to get ideas for MD as one of her ideas for her wedding is to get married at the Mount on the beach.  They still havent set a date as with SB being in the army, there is question marks around when he might be deployed etc but we thought we would get info so when they do decide on a date she can organise it in a shorter time frame. 

I also indulged in a spot of indulgent day-dreaming while we were down there and went to visit an open home of the house at Papamoa that is the first prize in the Heart Foundation raffle – yes I could definitely imagine it as our holiday home – We always support this raffle but it is the first time I had actually seen one of the home prizes they offer.

Neither OH or I wanted to come home but knew we had to be back for Uni (me) and work (him) so we travelled back on Sunday afternoon

I really enjoyed and appreciated that time away no matter how small it was and now that I know Im in remission OH and I are starting to plan our trip to Samoa which we will be doing end of June beginning of July for approximately 10 days – we have had to squeeze it in to the period I’m on break between semesters but also in between herceptin treatments. 

If I continue on with the herceptin and Uni this is how things are going to be for the next couple of years – figuring out when good breaks are so that we can have those times to do things to recharge our energy and do some of the things we have always wanted to do.

Anyway having written three blog posts today – you can fnd arrows back to the other two at the top of this post if you are interested – I had better get on with my Uni assignments

Cancer, Uni, and Mental Health

I’ve been sick with the flu since my last big update.  I have also had assignments to do.  You will remember I had got an extension to have an assignment, that had been due on the date that I was finding out whether I was in remission (4th May), to be put in a few days later.  It was amazing although I had complete writers block before the 4th, once I started writing the next day my essay just flowed.  As I said to the tutor that is going to be marking it, I still dont know whether it was what he was looking for but I liked what I had done and found it so much easier to put   my thoughts together coherently.  I put that assignment in on the Friday (the 7th) after taking the first three days of the week off with the flu.  On that Friday we have our culture and diversity class. The papers I am doing this semester are “the Social Work environment”, “Sociology”, “Psychology for Human Services” and “Culture and Diversity”. I was very annoyed at my lecturer in Culture and Diversity because I had found out on the 4th I was in remission and I was on a high. 

But his task for us for the Friday (7th) was to bring something to signify our biggest fear. 

 Gee, what do you think that might be…

I didn’t even have to think about what to bring to signify it as I wear it every day  – my charm bracelets.  I explained my greatest fear by showing them the bracelets and explaining each bead on it is an end-of-treatment or significant episode in my cancer journey and my other bracelet is the other significant things that have happened in the same timeframe – the cancer bracelet has  10 beads the other bracelet has 5.   My greatest fear is that the cancer charm bracelet will continue to be added to at a faster rate than the other one -that remission will only last a few months again and then I’ll be back in treatment and this going on ad infinitum –  or worse case scenario that the treatments wont work and I wont get to do the significant things that add to the other bracelet including finishing my degree.  I debated whether or not to tell my greatest fear as it was significantly different to everyone elses.  Some people had quite significant phobias about things – pigs, rats, spiders but mine was the only one that bought up the subject of dying. 

Which brings me to the mental health part of this post.  This last Monday we had a guest speaker in our “social work environment” paper who is a mental health social worker.  I actually admitted to the class I had had an episode of clinical depression after YD was born and I realised she had ongoing problems.  I explained that ever since then I have known what to look for in early warning signs and I have never gone back into the “pit” as it were.  One of the things that I have realised helps me to not go there is acknowledging things openly.  Saying Im a little down or upset instead of internalising them and dwelling on them.  Acknowledging them and letting them go.  This blog has been a prime example of this.  I am sometimes surprised that given my inclination towards depression that I actually havent fallen all the way back down with ‘Gertrude’ pushing me.  but I think its that because I acknowledge and recognise those early warning signs that I haven’t – and doing what I need to do to get back up whether it be getting a little counselling from the Cancer Society, rewarding myself with a charm bead when I’ve got through a treatment,  or speaking out on my greatest fear.  I didn’t want to tell the class what my greatest fear was, but because the assignment for the tutorial had been to think about it, I was going to dwell on it if I didnt actually acknowledge it and let it go.  This doesnt mean I dont get depressed or down but what it means is I dont slide into clinical depression which is staying down.

This is the second blog post I’ve written today – the first was a stalker update and the 3rd one will be on my lovely celebration and indulgence weekend I had last weekend to celebrate remission mark II – I decided to seperate them all into three distinct posts and I think I will do more little posts on individual subjects from now on instead of trying to write ones that combine everything that is going on at one given time.

Stalker update

Although it appeared for a while that my pulling the ‘big C’ card had made the guy back off – after a few days I started getting the odd “heya”s and “how are u?”s. I ignored all of them although the one he sent two weekends ago that said “hi beautiful” had me and OH in hysterics as at the time I got it I was in bed with the flu, looking sick with my flannelette pjs  on – only one boob and without my top partial dental plate in (i.e. missing my four front teeth).  I was tempted to send him a pxt of just how unbeautiful I was at that particular point in time but didnt want a photo of me out there looking like that. 

I had hoped by continuing to ignore he would eventually lose interest and get bored enough to leave me alone. However this last week he sent me a more explicit text that I am not going to repeat on here and I thought I can ignore the “heya”s and the “how are u” and the “good mornings” but I do not want to look at my phone and read stuff like that so I rung my cell phone provider and got them to deal with it – they have given him a warning and if he continues to get in touch with me they will report him to the police and disconnect him.

All in all this has been a very weird experience and has made me realise there are some very sad people out there.

I have time!

Remission!!!

I got the good news today that I am definitely in remission.  The node has shrunk and there is no other sign of metastatic cancer.  It is such a feeling of relief to know that for a while at least my life can return to something like normal.  I will still be carrying on with the Herceptin but the side effects of the Vinorelbine(Navelbine) should soon fade.  The other good news is that my echocardiogram of my heart showed really good heart function LVEF which means the herceptin hasn’t affected my heart even though I’ve been on it for over a year and a half with only 4 months off.

I didnt get to see Dr H today -just one of his registrars but the plan is that they will schedule me for 3weekly herceptin and see me in 3 months time unless anything worries me before then.  I will probably have a CT scan at the 6 month mark just to be sure that nothing is growing even if I’ve had no symptoms.  This means I can get on with planning my July trip to Samoa and being able to feel more well and concentrate better at Uni

my cancer bead bracelet and other special beads bracelet

I bought my next milestone cancer bead to commemorate finishing my vinorelbine and achieving remission.  Michael Hill Jewellers have put out a watch bead that can be threaded onto the charm bracelet and that is what I got for this milestone.  I thought it reflects perfectly the fact that being in remission means that I have got time to do the things I want in life.  I hope that I have enough time that my other bracelet gets more beads on it than the cancer bead one.

I will keep on writing Get out Gertrude posts like I did the last time I was in remission just so you get to see how Im adjusting to ‘normal’ life again.  I think I am in a better headspace this time around as OH described his thoughts on it this morning as “Que sera,sera” – “what ever will be,will be” and thats how I feel too.  There is no guarantee that the cancer wont come back again – in fact its more likely to than not having had one recurrence already but I will deal with it if or when it happens and try not to stress too much in between times.  I am still classed as being in active treatment because of the ongoing herceptin treatments every three weeks and I will have to time holidays etc round that but other than that -life is going to be good!!!