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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

“She turned out the light and closed the door…”

“…And that’s all there is. There isn’t any more. ”

When thinking about how I wanted to start this, the last post on Get Out Gertrude, the thing that kept jumping into my mind was one of my favourite stories when I was young, Madeleine. At the end, the narrator says the line above as Miss Clavel says good night to the girls and it was one of the first lines of the story I knew off by heart.

Knowing that Mum and I share the same faith I think has helped a lot on this journey – I know that even though she isn’t here right now (and believe me, that sucks big time sometimes), her passing away was less of a goodbye and more of a “See You Later”. Two months have gone by now and we have survived – we’ve even had our first family emergency (MD fractured two vertebrae in her back – she is fine but needs to wear a brace for a couple of weeks until the bone knits back together) and we supported each other and got through it. As a lovely girl I met at a baking class told me, having lost her father ten years ago, “It’s always going to suck, but it will get less painful”.

Mum left a legacy that is huge. The information on this blog is so useful to people that find themselves in similar places with cancer diagnoses – whether it be IBC or metastatic breast cancer. I hope to fulfill her dream of editing the content into a book and ensuring that all this useful information endures. Mum was super-organised (like mother, like daughter) and in her will, entrusted me with the legal rights to her intellectual property, including this blog. On that note, if any other bloggers or organisations would like to use information, posts or pictures incorporated in this blog, please contact me via email here.

I appreciate that for some of you, this is the end of the line – you loved Mum and you read her story because her cancer diagnoses and the information that she shared helped you through your own dark times. Please know that you meant the world to her – she loved the fact that she was helping others. Some of you may have been reading because you knew her as a friend and you were interested in the family aspect of her blog. You may be interested to keep following what is going on with our family through my blog, but please don’t feel obligated to do so. Whatever brought you here, thank you so much for your support over the years and, in particular, the last few months. Your words of love from around the world have meant so much.

This is OD, turning off the lights and closing the door.

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“Cause I’ve had the time of my life…” – a celebration of Mum’s schooling era

As you will know, if you’ve been reading for a while, three years ago Mum started a Bachelor of Social Work with the University of Auckland. She always knew that there would be a solid chance that she would not finish it – studies show a 25-50% survival rate (and that’s survival, not cure) after diagnosis of IBC. As it turns out, we held her funeral on her fourth cancerversary (did not realise that until I was typing this) and at that stage she was just a few credits short of being able to gain her diploma. Sad, yes, but I know that Mum would not have traded that time for anything in the world.

Her close friends A, N and M from the course, along with her lecturer J and others campaigned to  give her some recognition for what she had managed to achieve in her course. And achieve she did – this is a woman who, during active treatment, was regularly gaining As and A+s. This is the woman who would have liked to gain a PhD and lecture herself. As it got to the end of last semester, however, she knew that she wouldn’t return. So on Wednesday the 27th of July (the week before she passed), Mum had her own little graduation of sorts, where she was declared “QBE” or qualified by experience. She wrote a short post on how much her “Mixed Nuts” classmates had meant to her here.

What I don’t know whether people realise is exactly how much it meant to her. She had photos and film of the event and on Monday the 30th, my first “task” of the day was to sit down and watch them. She was so proud of what she had achieved and really overwhelmed and humbled by all the beautiful things that people had said. We discussed how it is possible for anyone to graduate, and walk across the stage with hundreds of others, but it takes being pretty special for people to throw a “graduation” of your very own. We talked about how much she must have meant to everyone to have a certificate signed by every one of her lecturers.  Why wouldn’t you be proud?

Mum had two goals once her cancer had made it to the “control, not cure” phase: make it to my (OD’s) wedding and make it to her fiftieth birthday. The night before she died, she said that she was satisfied. The uni celebration and the visits she had had from friends had made her feel so loved and appreciated that she didn’t need the big event, especially if she had to plan it to happen in advance of the actual date. As she put it “You don’t usually get to hear the nice things people say about you before your funeral”.

She’d planned to post this second post last week – showing her certificate with blanks on it to protect the privacy of her lecturers. It is the least I can do to post this here and honour that wish.

We are so proud of you Mum.

Look at the stars, look how they shine for you…

OD here again. Driving home from Dad/OH’s tonight, the sun was setting and the sky was filled with gold and pink. It was another spectacular moment in the sky, one of many in a week that was meant to be awful and dark and revolting. Mum always said that grey days only made one feel worse, and in the middle of winter, those days here have been very few. Coincidence? Maybe. But that golden light tonight made me think that it was time to write one of two posts that Mum wanted to write. This one is on faith.

Mum’s history with the Christian Church is strong. Her mother was very religious and a large amount of socialising in Mum’s rural town upbringing was church-related. Mum attended the local youth group and even taught some Sunday School. Her and my father were married in the local church and all three of us kids were also christened there. 

Moving away from the town meant moving to different churches and the fit was not so good. My father is agnostic and has never attended regularly. My disabled younger sister came along and Mum was made to feel bad that she was not attending church regularly, yet also made to feel that YD was disruptive and unwelcome. In what is possibly the most horrid example of “church-i-anity” that I have heard of, Mum’s pleas for help in some sins that she was struggling with were met with the comments that YD’s disabilities might be God’s punishment for the things Mum did wrong. Just writing that makes me sick. YD is one of God’s creatures too and I can’t believe how cruel people can be.

Mum left the church and never went back. A couple of weeks ago, she got a letter from a family friend known as Mrs Five-Minutes – the one that Grandma was always on the phone to for “just five more minutes”. Mrs FM knew that Mum no longer attended the church of her youth and was worried that Mum had lost faith. Mum has always had faith in God, even when she has not had faith in people.

It was something that Mum wanted to write a blog post on – that her belief in Science and her belief in a higher power were not mutually exclusive. The reason that she was not afraid to die – and we both agreed that not being scared didn’t mean that it didn’t suck – was because she was a firm believer in that this life was not all there was. She didn’t know exactly what it would be like but she knew that Heaven would be love and being with God and that Hell would be not getting to be a part of that.

She’d thought about attending a church again but didn’t want to be perceived as a “rainy-day Christian” and was getting to the point that she didn’t want to be explaining her history to a bunch of new people, didn’t want to be known to a whole new bunch of people as “Jenny, the cancer patient”. She knew that you didn’t just get into Heaven by good works (although we discussed that those would have given her plenty of brownie points) but she knew that she was strong enough in faith that she would get to be part of that love.

What do I believe? I believe that at that point, so soon before she passed, when she told us that she had to go, that  door to the hereafter was opening. She seemed so at peace with heading into the light. I like to think that our family friend Keith and Mum’s dear IBC friend Susan were waiting on the other side to welcome her with the joy that she deserved. I believe that she’ll never truly be gone.

“We tasted all we could” – RIP Jenny Williams, author of Get Out Gertrude

Jenny Williams, beloved wife, mother, friend (and one hell of  a cancer fighter) passed away on Tuesday evening, 11pm NZT. Her deterioration was quick – she was not ill more than 24 hours and, in essence, most of her decline was in the last six . It was vastly quicker than any of us had expected (including Jenny) but she knew she had to go.

Part of Mum’s campaign, in writing Get Out Gertrude, was to present an honest and truthful look at what inflammatory and metastatic breast cancer looks like, so in this post I’m going to be honest and truthful about what those last few hours were like. If this is something that you will struggle with (or perhaps don’t want to burst into tears at work), please stop reading after the quote. I’ll end this section with a laugh – on Monday Mum was telling me that in this blog post I shouldn’t say that she “lost” her battle with cancer – she says that she is finally going to win, and just perish from her battlefield injuries!

Life will break you. Nobody can protect you from that, and living alone won’t either, for solitude will also break you with its yearning. You have to love. You have to feel. It is the reason you are here on earth. You are here to risk your heart. You are here to be swallowed up. And when it happens that you are broken, or betrayed, or left, or hurt, or death brushes near, let yourself sit by an apple tree and listen to the apples falling all around you in heaps, wasting their sweetness. Tell yourself you tasted as many as you could.
– Louis Erdrich, The Painted Drum; via A Happy Adventure

Mum had the best last week ever – she was awarded a recognition of achievement in the Bachelor of Social Work course she was completing (an additional blog post coming on that later); she finally got to meet a close Twitter friend on Friday and had great South American food with Sis S and Niece S; we had a fabulous family lunch at Elliott Stables on Saturday, in which she was able to make solid inroads into both her meals, something a little rarer lately; she was able to see C off at the airport on Sunday morning and spent a lovely afternoon with friends at home on Sunday afternoon.

Mondays were the days that her and I (OD) spent together and we had a great day! We ended up running a lot of errands that day – she had said that one of the most annoying things about needing the wheelchair was that it required someone to actually take her out of the house. We went and spoke with her florist friends about her funeral flowers and what she would like and stayed for probably an hour and a half just chatting about everything. We went to the picture framers and on the way she was trying to direct me how to drive (I grew up in the town that she and my dad live in – so I knew where I was going) and we had a big laugh about it. At the picture framers, Mum was still healthy enough to walk in (10 metres) although she needed a stool to rest on when we were inside. Mum’s artistic side meant that we were there for at least a good twenty minutes – she wanted these framed photos for YD to be perfect. A part of me does wonder whether she had at least some sort of subconscious idea of what was to come.

We went to the lawyers and paid an invoice – once again, Mum still feeling like she could walk the 10 metres or so to the entry of the offices. Then it was off again to Mum’s favourite local cafe for lunch where she ordered wedges and a ginger beer; finishing the ginger beer and half the wedges which was again a great effort compared to some of her previous eating. We walked through Farmers and she pointed out a baby t-shirt that she liked, but of course we thought we had more time to look at things like that (one of my bucket list things with Mum was to shop for baby clothes together as she wasn’t going to be around when we do have kids) – you better believe that yesterday I went back and bought that cute little baby shirt for my as-of-yet non-existant baby!

We went to the post office, we went to find a frame for her cerficate, we went and saw her friends at Lotto and the Chemist (owned by the same company and Mum used to work in the Lotto section). Mum had great chats with her friends and then we came home and she saw even more friends while I cooked a roast chicken. Despite eating a big (for her) lunch, Mum also had quite a bit of dinner. She was tired, but at that point so was I. It had been a long day. R (my husband) and I left, Mum went to bed.

In the night, Mum woke up with diahorrea and it became clear that one of her haemerhoids had burst and was bleeding quite a lot. In hindsight, this was probably the sign that things were changing but she’s had bad nights before. She woke up a second time and Dad stayed at home from work until Mum woke up in the morning. She was lethargic but otherwise fine. MD came home from school practicum early and helped Mum dress herself, but again she had had bad nights before and found these things difficult before, so we didn’t think too much of it. Because of the bleeding, MD, Mum’s Sis M and Sis F took Mum to the doctors, where he examined her and provided her with a barrier cream and no other medication. Mum was still coherent and able to move herself when being examined.

In the afternoon, YD came around with her carer, L. They were still able to carry on a conversation but Mum was very tired. As YD left, she told Mum that she “was very lucky to have her sisters her at this time” – out of the mouths of babes, right? Mum’s friend T made an impromptu visit and again, whilst tired, Mum was still coherent when T left at 5 pm.

It all went downhill very quickly from that point. Mum started to become less coherent, not realising that she was lapsing in consciousness in between periods of lucidity. I was called and blasted home the 40 kms from my parent-teacher interviews. When I arrived, Mum’s breathing was troubled and she kept on telling us that she was very tired. We tried to get her pain medication in her but she was finding it increasingly difficult to swallow and we could not move her without hurting her to get her to bed. The decision was made to call the hospice and they sent out nurses to check her out. Mum was aware that this was happening – in her lucid moments she was saying that she didn’t know whether it was the right time to go to hospice, how she was getting confused about things so maybe she should go to hospice, that we could see what she was like and if we thought it was right, it was right.

Two hospice nurses arrived and they diagnosed her as having some sort of systemic shock. She was cold in her extremities and she was clammy and they told us to call an ambulance. As the ambulance staff loaded her onto a stretcher, the hospice nurses took Dad (OH), MD and I aside and said that it would be highly likely that this was it, and that she would pass away tonight. From all accounts in the ambulance, she was still completely herself in her lucid moments, correcting Dad/OH when he was getting her medical history wrong.

MD and I jumped into the car and headed for the hospital, getting R, MD’s friend B, Sis M and Sis F on route to the hospital via phone. When we arrived, it was a very short time before Mum was moved into a monitoring room in the ED and the doctors and nurses that were to be with us for the rest of the evening arrived. The doctor said that given her current medical history, there was no point in poking her and prodding her with unneccessary tests. Their goal was just to make her comfortable for as long as she had left.

At this point , Mum started complaining of a lot of pain and was curling up on her side. The nurses quickly organised a line for morphine into her abdomen and gave her half a syringe. Mum was significantly more comfortable after this and was able to ease out onto her back. She was surrounded by most of the family as Sis F waited for R to arrive. During this time she just kept on repeating herself to us – you have to look after each other, you have to keep loving each other, you have to keep caring for each other. We were assuring her that we would and telling her that she could rest and let go, that this was the end. She said to us “Okay, I’ve gotta go, bye” and those were her last coherent words. Sis F came in to let me know that R had arrived and I went to tell him how serious things had got. In the intervening term, the nurse had come in to give her a muscle relaxant as her breathing had got very gaspy. We walked back into the cubical, told Mum “R’s here” and she took a big sigh. While she lived for a short time after that point, I think that in essence, everything that was Jenny at that point left the room. So typical of Mum that she felt like she couldn’t go until everyone important was there and everyone had someone there to support them.

The end came smoothly, with everyone she wanted around her. The doctor came to confirm death and was so respectful to Mum, still telling her what he was going to do to check her vital signs. The bereavement care person came and took us through the process of what was going to happen from here on out. The majority of the family was escorted through to the bereavement care room and Dad/OH and I stayed in the room, waiting for the orderlies to come and collect her. We laid the bed down flat and tucked mum in, staying and talking about her and to her.

Once we’d been moved though to bereavement care, they took Mum to make her comfortable in the viewing room. When we walked in, I was so happy to see her laid out with the beautiful purple blanket that her uni friends had bought for her in Whangamata. She was so excited about that blanket; she told me about it the minute I walked in the door of A’s bach. We spent a lot of time with her in the room, sharing stories of times gone by, having tears and having laughs. Leaving her at the hospital when Dad/OH and I had to head home at 2 am is one of the hardest things we’ve ever had to do.

It’s been a whole day now since that happened – it seems surreal that she is gone. She had two blog posts that she really wanted to write and I’m going to do my best to write them on her behalf. Thank you so much for being the wonderful, supportive community that you have been – I know that we’ll never manage to thank all of you but you have all meant SO much, not only to Mum but to our whole family.

The best laid plans…

go awry. Mum has been hospitalised with another portacath infection this week (went in for radiation simulation on Tues and they didn’t let her come home) and while it threw a spanner in our festivities, we were pleased to have her home on a Christmas Lunch pass, even if it meant she got to skive off before the clean up. We hope to get her home either Saturday or Sunday and we’ll look at doing our big family Christmas thing then 😀 She’ll also do a big post on the experience when she returns.
– Yours in weary happiness, OD.

Reflections on an infection

It’s 6:20 am on Friday and I have just seen the sunrise out my window. Looking towards the domain gates the sky was all orange and pink over the trees – very pretty!

Well I’ve been in hospital for two days now and getting used to the idea that I will be in for a couple of days longer.  I didn’t realise how bad I was feeling until I felt is much better. It was such a gradual slide from tired to very tired to sick that I didn’t realise until it got bad.

The next day after the IV antibiotics had started to take effect I felt so much better. I haven’t run a temperature at all but they say that sometimes when your white blood cells are low your body isn’t actually fighting infection enough to actually cause a fever. The reason I am in hospital is my white blood cell count is too low to fight the minor infection that I have in my portacath incision and I need IV antibiotics and injections of GCSF to boost my white blood cell count. I’m learning lots of new medical terms like how white blood cells are called neutrophils and when you are low on them you’re called neutropaenic…

I’m being a very impatient patient – the enforced bed rest (captivity!) will probably drive me nuts before I leave. I’m not allowed to go for too much for of a wander or anything because I’m not allowed to expose myself to unnecessary germs – for the same reason, OD hasn’t been able to visit me, as she’s a bit sniffley. My first day was spent in a mixed room that had men and ladies in it and I was in a bed closer to the door with the curtains shut half the time. Yesterday about tea-time, I got shifted to a female-only room and I have a bed by the window so feel a little less claustrophobic.

Part of me is having trouble with the fact that my life has changed so dramatically in the last two months. The person that has to resign herself to being in hospital seems a long way away from the pereson I was at the beginning of July before all this started. I have to learn not to get too busy on my good days. I probably overdid things on my first chemo cycle and that is why things got on top of me so quickly this time.

I had hoped to work during the third week of this cycle but that’s now doubtful. I was just going to work one shift on a non-busy day just to see how I went but I am going to have to flag that away and just concentrate by getting my strength up before the next chemo cycle.

This afternoon MD and YD are coming up to visit me. We thought that it would be better to show YD that I’m fine (well, relatively speaking LOL) and I’m not too sick and there’s nothing to worry about rather than have her stressing that I’m too sick to see her. Part of me feels guilty about being in here (stupid – I know!!) but the fact that OH et. al. have to come up and visit me instead of us all relaxing at home just bothers me.

I’ll probably write another missive from the hospital if I’m in longer than Sunday (I get to go home once my white blood cells start rising again) and I’ll get OD to type it in again. Thanks to OD for typing out for me on the blog and for being able to decipher my handwriting enough to do it (note from OD: I’ve had almost 21-odd years of practise!).