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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

“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.

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37 Comments

  1. I want you to know that your mom was one of the first people I “met” when I began blogging. She meant so much to me and to many others. There are many tears being shed around the globe. I am so sorry and send my love and condolences to your entire family. I will hold you all close to my heart.

    Much love,
    AnneMarie

    Reply
  2. I am trying my hardest to hold back the tears right now. I’ve never read this blog before, but your mum sounds like an amazing woman. I am so sorry for your loss. You are doing an amazing job in all of this – so strong (even though I know you probably don’t feel it). We lost my brother in law in 2010 to melanoma. He waited until he knew that my husband (who worked FIFO) landed at the airport and was on his way to the hospital before he left us (as you would relate – this was the longest, hardest car ride my husband has ever had to do in his whole life). He couldn’t hold on any longer, but I swear he tried to make sure his brother was on his way, so I totally understand that. Love and hugs to you xoxo

    Reply
  3. Thank you so much for this wonderful blog post x A twitter friend x

    Reply
  4. Pam

     /  August 1, 2012

    Fly high and RIP Jenny, you have done so much for breast cancer. Last night I was thinking of Jenny and wondering how she was this week. Such a personality as Jenny never dies, it will always be there in spirit. How brave you are to have written this post, I will be thinking of you all in these days days and years ahead. Jenny was such a brave soul and put up an amazing battle. xx

    Reply
  5. Angela

     /  August 1, 2012

    Thanks so much for sharing this OD-a beautiful story and tribute to your mother and my dear friend.xxx

    Reply
  6. Louise

     /  August 1, 2012

    My uncle also died on Tuesday of cancer – like your mum of cancer, too soon but also thankfully quick and peaceful, surrounded by loved ones. RIP Jenny and my love to those left behind

    Reply
  7. Meghan

     /  August 1, 2012

    How strong you have to be to write all of this out so soon after your Mums passing, and to put it so poetically and beautifully reflects how your mum saw life/death/illness… Love to you and your family, I know it is a tough thing to go through, even when you know they are going to go it still doesnt seem real or fair, as I found when my dad passed of cancer 20mths ago. Keep strong and stick together. x

    Reply
  8. Karen aka BreaatCancer Karen on fb

     /  August 1, 2012

    Thank you so much for writing this blog post for your mum, she would be so proud as like you said, she blogged to tell people how it really is.
    I met your mum on Twitter and had many messages back and forth, she even discussed stopping chemo with me which is something i took the decision to do last year. We talked about the differences between our cancers and the similarity’s of both of is wanting a quality of life rather than quantity. I admired her so much, always had a smile and a great swnse of humour.. Jenny was always there for everyone else and I feel very honoured to have has the pleasure of knowing her (even though for a short while) on twitter. I don’t use twitter that much but for some reason was drawn to it today and went to your mums profile straight away. I cried, just like in cried after reading this blog.

    Your mum haa touched sonmany people with the honesty of her blog, her warm heart amd gorgeous smile… She will remain an inspiration to me and My heart goes out to you and all the family and Jenny’s friends.

    No one ever knows what the right words are but I hope you find comfort in knowing that Jenny (your mum) has helped so many people out there (especially me) that she will never be forgotten

    (to Jenny… Sleep well dear angel, you have earned the rest… Until the time comes to when we can meet in person … Will miss in the meantime big big hugs xxx

    Reply
  9. Lisa F

     /  August 1, 2012

    Thank you so much for letting me us know. Jenny was an amazing light in my life, I followed her journey & am quite heartbroken that she is gone. Will miss you Jenny, Vale xxxx

    Reply
  10. Barb

     /  August 1, 2012

    I am sure Jenny would have loved this post. So honest and beautiful. Jenny was such an inspiration to so many. This post just brought me to tears. Thank you for sharing. Peace dear Jenny.

    Reply
  11. Marie Algeri

     /  August 1, 2012

    Thank you for writing such a beautiful tribute to Jenny. Her family was so important to her and I’m sure she was very comforted in her final hours. Jenny is so special to me, my IBC sister. She has supported me throughout my journey and she is one of a kind. I will carry her in my heart forever! God Bless you and your whole family. Much love!

    Reply
  12. Thanks so much for that. It was important for me to read it as Jade and I cannot be there to say our goodbyes. Please know that Connal has brought over all our love and hugs and wonderful memories of a generous, loving, strong lady who held her head high throughout it all. AND still managed to put her family first. Godspeed Jenny you definitely earned your wings. xx Lisa and Jade Holmes

    Reply
  13. Thank you so much for such a beautifully written post and such a tribute to your Mother. Although I just found this blog, I can tell from reading this post how many people looked up to your Mom and valued her writing. I can also tell how wonderfully connected she was in her local community. Her spirit will live on in the wider breast cancer community. May your family find the support and peace you need to celebrate her life and grieve the loss of her from your day to day existence. Big hugs from Canada! Terri

    Reply
  14. I met Jenny on NZ City after her diagnosis and my brother’s diagnosis of prostate cancer. We shared many life stories and became buddies in games. When MD was living is Christchurch we met up and discovered a mutual friend. We spent an enjoyable dinner with Jenny, OH and our mutual friends. Since then we have discussed life, death and choices. Jenny came to Christchurch for another IBC friend’s funeral. We discovered another link. Jenny was going to the airport really early in the morning and was going to wait for her flight for three hours. We discussed the timing of no longer being on Chemo, family, life, death and the future.
    Reading your post on behalf of your mother I can see you have many of your mother’s characteristics such as strength and concern for others. My thoughts are with you over this time. It is difficult to be left to face the grief of loosing a much loved wife, mother and friend. Her presence will live in our hearts for a long time yet. Remember the fun stories and the special woman her shared her journey with honesty and concern for others. RIP Jenny. Strength and love to you all.
    Cheryl

    Reply
  15. You have done your Mum – and all your family – proud with this beautiful post. Thank you for keeping her friends informed and including us in your thoughts at this heart-wrenching time. May the comments and love left here bring you comfort and company in your loss.
    Lots of love.

    Reply
  16. Gillian Wintrup

     /  August 1, 2012

    I met your Mum over a year ago when she joined BCAC, she was a very special lady, with such a warm smile, amazing giggle and laugh. I was impressed with her passion for informing people about inflammatory breast cancer. She did so much for the women of New Zealand getting the message out about IBC. I wish your family love and gratitude for sharing Jenny with the rest of us. xxxx

    Reply
  17. Nina

     /  August 1, 2012

    Thanks for the heads up about not reading at work! Picked up the blog whilst in class with my students, they noticed my shock reaction …. Sat here with a soaking tissue. Jenny was one of my first twitter friends and made me feel very welcome in this new network world. She inspired me to live and enjoy. You have good reason to be proud of her. Will miss her.
    In my prayers.

    Reply
  18. extremeparenthood

     /  August 1, 2012

    Thank you so much for sharing the details of Jenny’s last day with all of us. It is both comforting and bittersweet to know exactly how things progressed.

    Your mum was one of my dearest friends despite the fact we never met in person. Three years ago when we first “met” on Twitter she was like a beacon of light to me as a mom raising two boys with special needs and doubting everything I was told by the doctors and professionals. Her guidance as a mother of an adult daughter with special needs meant the world to me and from there our friendship blossomed into so much more.

    I will never be able to look at sushi without thinking of your mum. We loved to tease each other about it since we lived on opposite sides of the time zones I’d be eating it in the evening as she was just waking up or she’d be eating it just as I was due to go to bed. It all sounds so silly now but we loved taunting each other with our #sushitemptation tweets.

    Your family and all of Jenny’s friends are in my prayers. We have had to say goodbye to an amazing woman and though our time with her was short her memory will be a blessing to each of us.

    Godspeed my dear Jenny. We will meet again!

    Reply
  19. Marie M

     /  August 1, 2012

    Thank you so much for writing this post and I am glad I read it at home. I did not meet Jenny in person but had known her thru Facebook before she was diagnosed. Both Jenny and Gary had messaged me asking me to help as leader of the game we used to play and that she had the ‘rash’ and had to have tests then after Jenny was given her result I was asked to take over while she had treatment and they would take the leadership back, that never happened and the game was removed. I kept in touch reading her blog and in the games we both used to play.
    She has been an inspiration to so many and like so many others I always believed she would get thru this. Her memory will live on.
    She put up an amazing battle and I very much enjoyed looking thru her photos of her travels
    Love to all
    Marie ( from across the pond )
    xx

    Reply
  20. Beautiful post and I loved your mom’s posts. You honor her so well with this beautiful writing.

    Katie

    Reply
  21. Tania Hallinan

     /  August 2, 2012

    Thanks for updating us on her final days. I was the impromptu visitor, hours before she passed and I am so thankful I spent that time with her. I had no idea she was so unwell as she was so coherent even though she was tired. It sounds like she went so peacefully surrounded by all who loved her and she loved. RIP my friend Jenny, another bc angel to watch over us.

    Reply
  22. Kelly LaPorta

     /  August 2, 2012

    Thank you for righting this post. I am so glad to hear that she had all of you with her at the end. Although I never met Jenny in person, as a fellow IBC sister, I was inspired by all she did. She was a truly strong person. My prayers and positive thoughts go to all she loved.

    Reply
  23. Thank you so much for sharing this – Jenny is so respected and loved in the online BC community and I am appreciative of your including us throughout. I felt especially close to Jenny as we were in the same corner of the world, where there do not seem to be so many BC bloggers. During the #bcsm Twitter discussions we would be joining from Tuesday, when the majority of discussion was taking place on a Monday evening US time.

    I loved the way you shared Jenny’s spirit in correcting your father if he got her medical history wrong, just a few hours before she passed. What a special family you are and I am humbled to have known Jenny and gotten to know you all. She has shared her wisdom generously and helpfully and I for one have gained a great deal through knowing her.

    I will be with you remotely on Saturday, lighting candles here in Yangon and remembering Jenny, celebrating friendship with one very special woman.

    Our heartfelt condolences and thanks to you all.
    Philippa

    Reply
  24. Thinking of all of Jenny’s family, and so glad she had those she loved with her as she said goodbye. Thank you for sharing this with us, your mother seemed to have such a big heart; her love is just going to keep on rippling outward. My condolences to you all.

    Reply
  25. Susan Niedospial

     /  August 2, 2012

    I just found out about Jenny’s passing on the IBC support site. My deepest sympathy to her family and friends. I pray everynight for those of us touched by this monster, IBC. Jenny was a wonderful, strong woman. May she rest in peace. Love, Susie in Chicago dx IBC 4years

    Reply
  26. Thank you for so generously thinking of Jenny’s on-line community of friends at this emotional and difficult time. Your kindness is so appreciated. Jenny was admired and loved by many. She will be missed. I am so sorry for your family’s loss.

    Reply
  27. Marti Staton

     /  August 2, 2012

    Thank you so much for this beautiful entry. Your mother was a comfort and support to me and so very many others. I’m so very sorry that she has left us but I’m also glad that she was surrounded by you and the rest of her wonderful family. I know that she will live on in the hearts of so very many. Again, thank you for generously sharing this story. Peace and love, Marti

    Reply
  28. Keri little

     /  August 3, 2012

    I did not know your mum personally, she sounds like an amazing mother. You have done her proud in you’re writing. I have been down this path also and I will never forget each moment especially those first steps leaving the hospital. Your writing is beautiful and you are correct, I cried and I smiled. I wish you and your family well for the next stage of your grieving. Thank you for having the courage to write the blog and sharing x

    Reply
  29. dawn bilski

     /  August 3, 2012

    thank you, OD. Jenny will be sorely missed. she brought strength and comfort to so many. prayers for peace and comfort to you and your family and all who loved dear Jenny.

    Reply
  30. Your mom was a wonderful and giving person. She will be greatly missed.

    Reply
  31. emma dyson

     /  August 6, 2012

    I’ve never heard of this form before until I came across another lady on Facebook. Your mums amazing such a strong individual right tl the end. O hope that this form of a terrible illness is told amongst more people, since I’d never heard of it think more people should be aware of it. Amazing lady by the sounds of everything you’ve Said..hard not to cry. RIP <3

    Reply
  32. Ah thats a lovely blog and your mum would be so so proud. Sounds like you all made the most of what precious time you all had left. I will be praying for you all. Xx

    Reply
  33. modmomblog

     /  August 16, 2012

    You + your mom are so generous to share this personal experience :) jaydub was my twitter friend too & got me a google+ invite :)
    I still feel her positive energy

    Reply
  34. when you wakeup everyday ,you say three times “i never get angry”.it will be workout. u mind it onething,angry is create some chemical reaction.it will affect ur hole things of body(in future).

    Reply
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