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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

“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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What we told YD

and what she told us….

Most regular readers of my blog and people who know me in person know our youngest daughter (YD) has special needs – stemming from a congenital deletion of part of her 12th chromosome. 

She is 23 years old and has been living away from home in a residential services setting since a few months before I first got diagnosed with Inflammatory Breast Cancer (IBC) in August 2008.  To a certain extent this has enabled us to ‘protect’ her from some of the realities of my cancer treatment and also let me deal with my treatment without trying to be her primary caregiver too.  She knew I still had cancer and that I was taking chemo but now was the time to tell her some important facts….

YD  came home for afternoon tea yesterday (Sunday), we told her I was getting sicker from the cancer and she investigated the electronic laziboy (she loved the fact it had a remote, that the buttons made it go up and down) and  wheelchair that had been supplied by the hospice, we talked about if we went out with the wheel chair she could help push the chair, then she got worried and went off to the kitchen to get reassurance alone with her Dad and they talked about the fact that I was a lot sicker now and that I was going to keep getting sicker – that the cancer was never going to go away.

She had a little cuddle and a cry and went to her room and found her cabbage patch doll ‘baby Tina’ and talked to her – ‘baby Tina started crying’ Dad (OH) and MD went into her room with her. They kept talking to her and she kept saying she was worried and that mummy would get sicker.  She asked was Mum going to die – they said yes

She asked if I was going to die at home or at the hospital – they said I was probably going to die at Hospice – the place she has visited where E (hospice family support manager) works. She then wanted to talk to Baby Tina and told her how worried she was and that she was sad and she had a little cry.

We talked about who the people were that she could talk to when she was upset, the family, some staff, some friends.

She then came out of the bedroom and sat with me in the lounge and asked MD when Mummy was going to die and we said Mummy was not going to be alive for her (YDs) birthday next April.

I  said I was now like my mum (Grandma J) and would  get more sicker fast like Grandma and Grandma died quite soon after she got sick and that we dont know how fast that is going to happen for me. She worked down through the birthdays that I might not be around for – OD’s and C’s birthdays (March) or maybe even be around for my birthday (December) or MD’s (October) – we do not know how fast this is going to happen so it is hard to give her specific time frame.

She was expressing a lot of emotion through Baby Tina – we could find her faster than ‘Baby W’  her older cabbage patch doll doll on the spur on the moment yesterday but will find ‘baby W’ by her visit home on Tuesday.  I think it is really important that baby tina or baby Williams accompany here on visits to me and that she can take them home to continue the emotional processing. We printed out some photos of my laziboy and wheel chair for her take home and she also drew a picture of my chairs and of her , dad (OH), MD and baby Tina sitting on her bed talking

Tara’s drawing – she draws a lot to process things

Just before she left she bought up the subject of whether or not I would be buried or ‘made into dust’ and I told her my idea that I thought I would like to made into dust but then my ‘dust’ be put in a box and be buried or put in a special wall at the cemetery with a notice that said my name etc and she could go and visit and take me flowers at the cemetery and ‘talk to me’ like she does when she goes to Poppa and her godfather’s graves  – she thought that was a good idea.

As she was going out the front door to go home – she wanted me to give Baby tina a hug rather than herself  so I gave Baby tina a hug and told her to ’look after ‘YD’ ’.  YD liked that. As they left she also asked OH and MD whether I was going to be here for Christmas and Boxing Day. As OH started to answer ‘Probably not’ – YD had already started to say “ I want to light a candle and put it by Mummy’s bed for her not being here at Christmas” they said it was a very good idea and that they can do that.

Once MD and OH got toYD’s house with her, YD went straight to her room to reunite ‘Baby Tina’ and ‘Yellow Ted’.  She stood on the side of her bed and sat them facing each other to have the following ‘conversation’

Baby Tina: “ Your owner (turned towards ‘YD’ then back to Yellow Ted) ‘YD’ was upset tonight”

Yellow Ted: “ok Baby tina , break it down for me”

Baby tina:  “ Mum is going to die, Mum is going to die in hospice”

Yellow Ted “ I understand,… I understand”

Baby Tina “ So ‘YD’ is upset”

Yellow Ted:  “I understand”

YD then lined up Baby Tina, Yellow Ted and Pink Ted and said they could look after each other and ‘YD’.

Family

This last week cancer took a back seat and chemo took a holiday.

It was time to focus on family

It was time for a wedding.

OD and R got married.

I was Mother of the Bride and did a bible reading as part of the service.

doing the bible reading

I was tired but extremely happy.

Yesterday we spent a bit more time with family and friends at a day-after-wedding afternoon tea.

A great time was had by all

Family commitments

Hi all,

yes I know long time no blog post – part of that is the fact we have had lots of family stuff happening over the past couple of weeks and that combined with chemo sideeffects has left me too tired to do blog posts.

Easter was also YD’s 23 rd birthday so we had her home for 3 days/ 2 nights. On the Saturday we  shopped for new clothes (birthday present from us as it was the only thing she really needed) then went out to dinner at a mongolian BBQ restaurant where you pick and mix your meat, veges and sauces and then it gets cooked for you – YD loves the pick and mix part of it.

'mocktails' at restaurant

On Sunday OD took YD to church while I prepared clues for the Easter Egg hunt – family tradition for YD

one of the 17 clues...

 

Seeing Sunday was also YDs actual birthday – MD cooked her special pizzas for lunch and she opened her presents then OD, YD, C (our ‘French daughter’ ) and I went to the movies for the afternoon.

During Easter weekend OD also moved house she now lives in a nearby town approximately 20 km instead of in the same town as us.  So on the Monday YD and I went to see OD and R’s new house and explore the town,  which is the town I grew up in from the ages of 10-18, it has changed a lot. By the time YD went home on Monday night I was fairly worn out and spent the rest of the time before chemo on Thursday recuperating.

Last weekend was OD’s bridal shower (and hen’s night but I didnt attend that) – 5 weeks now to the wedding.  I have not been a very active ‘Mother of the Bride’ but was glad I was feeling well enough to enjoy this.

I have also been helping C with her uni assignments.  As English is her second language she sometimes needs help understanding what an assignment requires of her. and as a student of the University of Auckland myself I have been able to explain what they want and explain things like APA referencing and things like that which is not something she has had to use in getting her degree in France.  I also read over her assignments and make sure they are reading smoothly.  She writes well but sometime french syntax creeps in or she writes something that while technically correct is not the way we would write it in English so I just help her with that sort of thing.

My identity since my daughters were born and especially with being a ‘stay at home’ mum for so long , albeit with being very active in volunteer work, has been first and foremost ‘a mum’ and it has been something that I have stuggled with since diagnosis.  Even though the girls are grown there are times they have needed me and I have to weigh up how much I can do while still looking after myself through treatment.  I have had to work through feelings of guilt that I am not doing enough for any of them and knowing that I, or my condition, is  the cause of a lot of the stress in their lives pains me greatly but there is nothing I can do other than try and be the best mum I can be under the circumstances.

At the beginning of April I went to a creative writing workshop run by the hospice in conjunction with the ‘Whats on your plate’ exhibition being held at the Papakura Art gallery.  This was both a visual arts exhibition and an interactive written word exhibition with creative writing workshops being held with various community groups and pieces from each workshop being displayed as part of the exhibition.

This was the poem I wrote as part of the workshop and I have permission to put it on my blog

On my plate

The mixed vegetables of my children’s needs

Stir-fried together but each with their unique flavour

Adding to the mix

They need different seasonings

And none can overpower the other

How to spend the right amount of time cooking

So they will all come out crispy and delicious

Not limp and overdone

 

And how do they sit on the plate

Alongside the staple rice of my relationship with their father

The stew of my cancer treatment

And the garnish of my university studies

 

The different tastes and textures

Fit on my plate

My life is delicious

 

 ©Jenny Williams 2012

‘What on my plate’ creative writing workshop with Totara Hospice South Auckland in conjunction with ‘Whats on my plate’ Exhibition on at Papakura Art Gallery

Not normal words

Hospice

Morphine

Scary words aren’t they?

As one of my friends said they are words you associate with people who have only got weeks to live, not with me.

Have I only got weeks to live? – the answer to that is a resounding NO!!

Yet I have both these words in my life now.  I have struggled against my own psychological perception of these words, and they butt up against my perception of myself as someone who doesn’t need these things.  How can I kid myself that I am living a ‘normal’ life, albeit with cancer in it, when words like that are being used in conversation about my care.

I resisted being put on morphine for pain management for  a long time. “Nah I don’t need it – I’m not in that much pain.” – Yeah right.  The larger tumor in my liver is compressing nerves against my ribs and I have been in a lot of pain, and it is getting worse.  My pain medication for the past month or so has consisted of low dose slow release morphine, panadol and 75mg diclofenac tablets with other faster acting low dose but faster acting morphine for any additional break through pain.  I am still allowed to drive if I have not taken too many additional pills, but on days when I am in a lot of pain I tend  to stay home.

Pain management is one of the areas hospice can offer better support in and is one of the reasons I agreed to be referred to them.  When the subject of hospice was first brought up by RI my Cancer Society Liaison nurse a couple of months ago,  I said that I didn’t need them and to a large extent I still don’t.  But after talking it over with Dr H, my oncologist, who said getting into the hospice system before I really needed them was better and also that they could help me with pain management (being more expert in it)  I agreed to be referred.

One of the other reasons is that the hospice offers Family Support services and counselling and has resources  to help us with ‘what’ and ‘when’ and ‘how’ to tell YD what is going on with me.  Because I have been in and out of treatment for the last 3 and a half years, to a certain extent this way of life has become normalised to her. “Mum’s just having more medicine”. She lives away from home and has been protected from the real toll dealing with ‘Gertrude’ has had on me.  If we are going to have to tell her that the medicines aren’t working anymore, we have to do it in a way she understands and so that she doesn’t get fixated (with her autistic tendencies) on me dying and on when and how that is going to happen.  For those of you who know YD, I’m sure you can imagine as we can all imagine her saying “when are you going to die, are you going to die before my birthday?” (or other such event) and asking the question and other similar questions over and over again every time she sees me or talks to me on the phone.  I’m not sure it wouldn’t drive me a little bit crazy as well as not being very healthy for her.  It is something we really need some good resources around, to help prepare her for that eventuality, without her becoming too fixated.

Why am I telling you about hospice today – because I had my initial assessment visit from the hospice this morning.  They now know who I am and what I might need or want in the way of support in the future.  For now they will just ring every couple of weeks to check how I am and whether I need anything from them and they will get their family support services to look at what resources they can help us put in place for YD

We find out on Wednesday at my oncologist assessment appointment what the next plan is.  We think it will be moving onto the last chemo left to try.  We know it will only work for a certain length of time and then ‘Gertrude’ and her spawn will start to take over.  Only a spontaneous miraculous remission is going to stop that from happening.  I may die of cancer sometime in the not too distant future but as of this moment I am not dying of cancer,  I am just living it with it the best and only way I know how.

 

Downs and Ups

No chemo again for me this week… the strangest thing happened and instead of my neutrophils rebounding as we thought they would with no chemo the week before, instead they actually went lower – sliding from 0.9 to 0.5 which meant definitely no chemo for me this week.  I hadn’t felt like they were down that far, in fact I had been commenting to C about how I had so much more energy with not having chemo.

I have my next oncologist appointment on Wednesday so we will have to discuss where we go to from here.  Do we decrease the dose, carry on with the dose we have got and  hope the neutrophils behave themsleves enough for me to get adequate amounts of the chemo even if we have to miss the odd week or do we switch to the only other chemo I’ve got left to try.

I must admit it worries me a little that if I am not having chemo it is giving the tumours a chance to grow some more,  but hopefully if it is having that much of an effect on my blood count then it will still be knocking the tumours back as well.

My hair is taking longer to fall out than we expected but this week when I have been rubbed my head I have had a palmful of short hairs coming off. My buzz cut is looking very patchy.

my patchy scalp

But I have a variety of hats to cover it up with such as these turbans that I found in a young womens fashions store.  I’m obviously ‘on trend’ for Summer LOL

one of my trendy turbans 🙂

My face is looking a little rounder from the steroids causing water retention but other than that I’m quite happy with the way I look when I am out and about.  Having gone through hair loss before definitely makes it easier this time.

The upside of not having chemo for the last two weeks means I have felt a lot more well and energetic over the Christmas /New Year period.  I have had more energy to go out shopping with YD and C while YD was home for a few days for Christmas.  I travelled to the other side of Auckland to help MH (one of my uni friends) celebrate her 50th birthday on the 30th and celebrated my own 49th birthday with a lunch out with family on the 31st.  Apart from having to take my regular pain killers I have felt rather good.  And to a certain extent you ignore pain and discomfort if you are busy or having fun.

Today is the first day of 2012  – I am both excited and a little concerned about what the next year will bring me.  But I am already starting to plan my 5oth birthday party for 364 days time 🙂

Happy New Year Everyone!!

 

Merry Christmas

Merry Christmas Everyone!!

our Christmas tree

We had a smaller immediate family Christmas Day yesterday with OH, myself OD, MD, YD, OD’s R, MD’s boyfriend A, and our ‘French daughter’ (our AFS exchange student from 2006 ) C.  So our smaller family Christmas was bigger than it usually is. 🙂 This included bacon sandwiches for breakfast and  a more formal sitdown dinner in the early afternoon.

We have an extended family get together this afternoon/ evening with Sis M and her family, R’s family, and Niece S’s in laws as well.  This is more informal, with everyone bringing some Christmas dinner leftovers and is a very relaxed time.

I could have dwelt on the fact that this year I am metastatic and we dont know how many more Christmases I have got but  C and another exchange student N both arrived on the 20th of December.  (N is staying with her host family but visiting us often – just the same as it was when she was here in 2006.) N dropped in to see us last evening as well to exchange presents.

With C and N arriving so close to Christmas – C is staying with us until the end of July 2012 – It has added a new dimension to our Christmas preparation and celebration and has been exciting for us all.  I have chosen to concentrate on these and the other more positive aspects of Christmas instead of feeling down at all.

YD is home for a few days over Christmas as well so we are fairly busy.

Although it is not necessarily good for my health, I did not have my chemo that was due on Thursday because my neutrophil and white blood cell count was too low.  But the upside of that was that I have not had to deal with the side effects – nausea and suchlike – for the Christmas period.  So it is quite a positive thing in my book

I hope everyone else has had a good Christmas too

Christmas planning

I have been a busy girl this week – using the most of the ‘good’ times that I’ve had this week to get myself pretty well set up for Christmas – nearly finished the Christmas present buying just need to pick a couple of things closer to the time, have picked up the turkey and will pick up ham this coming week. I feel relatively realxed and with a collabrative effort from myself, OH and the girls I think this Chrismas is going to turn out pretty well.

It’s also going to be an exciting Christmas due to the fact that we have our French daughter and one of our Paraguayan daughters arriving on the 20th. C from France we hosted for a short stay in 2006 and she is coming back to live with us for 6 months and do a semester at University of Auckland towards her degree.  N from Paraguay we were liaison family for the same year (2006) – she was hosted by another family for her year stay but we had a lot to do with her and she stayed with us occasionally over that time – she is coming back for a 2 month holiday and will be staying with us for some of the time as well.  All our exchange students though AFS (a voluntary student exchange programme) are very much our daughters – part of our family, and I can’t wait to see them again.

Having had my third weekly Adriamycin on Thursday I can feel the toxicity levels have built up – I am having to take a few more anti nausea pills etc to keep the side effects at bay but so far so good.  My hair should start falling out this week and I have booked to get it shaved on the 13th.

I managed to go to my ‘Cancer Wellfit’ programme on Tuesday and Thursday last week and I am amazed and my trainer is pretty impressed as well how much my fitness has picked up in the 3 and half weeks I have been going.  I am pretty proud of myself.

I have had evenings out on Sunday and Tuesday since my last blog post and find I am managing the Christmas socialising by pacing myself and having afternoon naps if I need them. The socialising is tiring but enjoyable and people understand if I am not too energetic.  I have a 40th birthday party tonight and OH’s Birthday BBQ and tree decorating with YD tomorrow so will have a nap this afternoon and a quiet day on Monday to recoup energy.

I will just share with you a surprise christmas gift that just got dropped off into our letter box by Accent Photography , Katrina that did our family portrait photos earlier this year.  she has taken some of our favourite photos from the shoot and presented them as a 2012 calendar in a CD case – the case then becomes the stand – what a cute gift idea!!

surprise christmas gift calendar

 

 

Grave Matters

A week and a half ago, I took YD to visit the graves of her Poppa (OH’s dad) and her godfather K, both of which had passed away in 2000.  It had been one of the things on the list of things we had written earlier in the year of things she wanted to do when she came home for the weekends but we hadn’t got round to it until now.

I had a little bit of ulterior motive taking her this time, with the progression of the tumours in my liver and no guarantees that the last couple of chemos we have got to try will give us control for much longer, there has been more thought, and talk, about the virtually inevitable outcome to this story.  As YD lives away from home in a residential supported living environment to a certain extent she has been shielded from the worst of the chemo side effects and we have been able to keep the whole ‘cancer’ thing a little less scary for her.  But this means that she doesnt know , unlike her two older sisters that this is likely to turn terminal at some stage in the future.

As an aside, I personally think in staging cancers now there is long term survival, control and even sometimes some sort of remission acheived in metastatic cancers (Stage 4).  There needs to be a stage 5 introduced where you have exhausted treatment options and are in palliative end stage.  Stage 4 could be seperated into Stage 4a (control and shrinkage of the tumours as to be negligible) 4b (stable no growth) 4c (progression but still treatment options available )

Anyway, in discussions with L, who is the manager of the houses in the residential service that YD uses, there has been discussion around how much we tell YD and L has suggested we tell YD more.  I feel that at the moment when things are so up in the air time-wise, and while I am still fairly active it would just confuse her to talk about me dying when she deals in very concrete concepts and time-frames.  We have told her with this latest news that the cancer isn’t going to go away and that I have to change medicines and the new medicine will make me lose my hair again.  She was quite blase about the news as to her nothing much has changed then in the last 3 years.

Taking her to the visits to Poppa’s grave on Saturday and K’s grave on the Sunday (they are buried in two different cemetaries, in opposite directions from our house) allowed to us to have a talk about death in general.  She knows that Poppa and K were buried whereas my parents, who died in 2001 & 2004 were ‘turned into dust’ (cremated).  She expressed a wish to be buried herself and asked where she might be buried.  She also asked where I would be buried when I die, which helped me make up my mind between burial and cremation for myself, as she expressed a wish to be able to visit my grave when I die.  So although YD doesnt know that my death is likely to be sooner than she expects, I feel like we have done some preparatory work around it.

After visiting K’s grave on the Sunday we went to a nearby mall that we had not been to for a while. We did some Christmas shopping and surprisingly bumped into people we knew.  Usually when we go out it is when YD gets tired that the outing ends.  This time we left the mall when my fatigue etc kicked in.  YD was very grumpy about leaving and coming home so in the car I reitierated how I feel sick and tired, because she only sees me when I am up to doing stuff with her I dont think she realises just how much my health is compromised.  I have warned I might get more sick and tired and that she can’t expect me to take her out all the time.  I think that is all the preparation I can do for now.

Husbands and rabbit holes

More than slightly morbid blog post.

After hearing my tumor markers had gone back up, thoughts of death have reared their ugly heads again.  Most of the time as I go about my day-to day business, as much as we are looking at control rather than cure and that control will probably have a limited time frame, I push the thoughts of my death to the back of my mind and close the door after them.

Likewise it is a time that OH and I have some very honest discussions about the likely timeframes and what will happen closer to the end.

As much as I hold out some hope for a spontaneous miraculous remission I also acknowledge the reality of the situation and the chances of that remission happening are not as high as the less desirable outcome we are all facing.

I’m glad OH and I can talk about it, both seriously and with touches of very dark humor, and OD and MD are the same.

But one of the things I love about OH is  that he is also opening up to some of his work-mates about the emotional toll it has on him.  He relayed to me that when he was telling one of his work-mates our latest news, she asked him how he felt.  He had replied ” It’s like we are falling down a rabbit hole, with each piece of bad news we fall a bit further down. And we both know that eventually only one of us is going to make it back up”

When he told me that I envisaged us roped together down a hole – me a little further down than him, and I said that to him and I said there will probably come a time when he has to untie the rope and let me go. And climb back to the surface alone.

It’s not that I think it is going to necessarily happen any time soon but with chemo options starting to be in shorter supply and knowing the reality of my situation – I know we have to acknowledge it will happen eventually.  And our family believes it is better to talk about things, even down to things I might like for my funeral while I am able to make those decisions.  If my condition was to deteriorate rapidly and we hadn’t had those discussions, my family wouldn’t know my wishes.  It’s not like I am sitting down and planning my funeral, but more just having the odd conversation when I find a song I might like to be played or so on.  I can express that wish, they go OK, and we move back to more everyday matters.

I made my friend N at university cry, she is an accomplished musician and singer and one of the things I have thought is that I would like her to sing a song at my funeral.  When I told her that, she was very moved but said she also had been thinking a little along the same lines herself, and although I had made her cry we both agreed that whether it happens in 1, 2 or five years time; it was better for us to talk about it now when it doesn’t weigh so heavily on either of us.

As I think of other little things I tell my family or jot them down or if they are something that I see in a newspaper of magazine I will cut them out and put them in a little file I have started, and yes the label reads ‘Jenny’s funeral ideas’.  Some of them will be dismissed closer to the time, but having that file and that discussion now will definitely make it easier on myself and the family if and when we have to plan my funeral for real.

We still haven’t had these conversations with YD and we won’t until we have a more definite time frame. We will tell her the cancer is not likely to go away again, but unless she brings the subject of me dying up, I would rather not broach it with her while there is such an ephemeral time frame and also when I am not ‘acting’ sick.  I need to find some good children’s books, aimed about a 5-year-old level, to help her cope and process when the time comes for us to tell her.

I did warn you this blog post was morbid, but I firmly believe that it is important to acknowledge the reality of what we are dealing with

I am not actually afraid of death itself, I have faith in an afterlife, and when the time comes I hope to go with grace.

I just hope it doesn’t happen too soon.

Guest post by MD

I’m not the only creative writer in the family, both OD and MD have talents in that direction too.

MD is finishing her degree in primary (elementary) school teaching and as part of that she has to take a general education paper, that is one not related to the other course papers.  She decided to do an English paper and one of her assignments was to write a short narrative essay on an important experience.  This is what she wrote – she got a great mark for it and I think it captures some of our family dynamics perfectly.   She gave me permission to put it on my blog.

Standing in the gardens surrounded by flowers, trees and shrubs, I thought of the photo on the wall at my parent’s house. It was old, the frame was starting to fade and the gold detail flake away. The photo itself was still filled of colour and I could still remember that day. Eighteen years had passed since that photo was taken, my mother’s hair once long and curly is now replaced with a short wispy cut and there are scars on her chest and neck from her endless battle, my dad has aged with time, and the three girls are all grown up. In the photo I was six and wearing my favourite blue dress with little black bows printed all over, my older sister was wearing a colourful jumper and her long dark hair tied up in a bun. My little sister YD standing in the middle of us two, a big smile on her face as we held her hands tight to make sure she stayed in place. Mum and Dad were standing behind us, you can’t see it but they were holding YD in place as well. It takes quite an effort to get a good photo of YD.

“Smile”, eighteen years later and I was standing there, holding YD’s hand so she stayed in place once more.  We moved around the Botanical gardens, having
photos taken in various different areas. We stood by an old wooden gate with
rusted bolts and nails, moss was starting to grow over the wood in patches and
it sagged close to the soft dark soil on the ground. My black heels sunk slowly
into the ground like an anchor lowering into place. Photo after photo was
taken, and my smile started to fade and feel fake as we moved again to a new
part of the gardens for a change in back drop. Then I heard it, the start of
one of YD’s meltdowns. She grizzled and groaned, mumbling about how she doesn’t want any more photos, then it developed into a cry and scream.  I could understand her frustration; we had been taking photos for over an hour. People started to stop and look; this is nothing new to my family. I walked up to my little sister as she was hunched over sitting on a seat by a big native tree, and gave her a long and tight hug.
She cried and told me how she had been trying hard but it was boring, she does
not like waiting, its part of having autistic tendencies. I asked her why today
was important. Why were we getting photos taken? She replied “because the other photo is old”. If only life was so simple, we were getting a family portrait
taken as we do not know how much longer we have together, because my mum is
sick. YD knows mum is sick but she doesn’t need to know the severity until she
has too.

As we walk towards the cafe to have afternoon tea, I put my arm around YD’s shoulders and tell her she did well today. I feel an arm around my waist, its warm and pulling me tight. The hand is pale and thin. I feel an immense amount of happiness in that moment, its YD’s hand. She doesn’t physically show emotions like that very often. We share a special bond my little sister and I, it’s not a normal relationship but its only one that we understand and I am her best friend.

the photographer captured the moment

Our first family portrait on the wall at my parent’s house shows a young family with an unknown future ahead of them. Life has changed in many ways, we have all grown up and moved out of home, my big sister is getting married, YD has lived longer and overcome obstacles we didn’t know she would.
There have definitely been some hard times. But the new portrait, it shows a
family of adults that can overcome anything, that are still standing all together and holding YD’s hands so she stays in place.

Family portraits show more then who is in your family, they show who your family, as a whole, are together.

Extraordinary

At the afterparty

Unbeknownst to me OD nominated me for a competition run by Auckland Theatre Company where people nominated women who they considered extraordinary.

click here to see ODs nomination

To my surprise a week and a half ago she popped round to tell me I had won.  The prize consisted of a pampering session last Friday afternoon where I had a facial, manicure and my hair blow-waved at D’Aguiar.  Followed by checking in to a beautiful boutique hotel in central Auckland called Hotel DeBrett.  Dinner in the hotel restaurant, including meeting the owners of the hotel and then picked up and chaffeured to the theatre by the owner of a luxury tour and transfers company ‘A Perfect Welcome’. At the theatre I was given tickets to  the the opening night of Auckland Theatre Company’s production of “Calendar Girls” and an invitation to the afterparty where some of the stars of the show were happy to be photographed with me.   I was also given signed programmes where all the actors had written personalised messages.  Everybody I met during this experience was extremely welcoming and genuinely friendly and I had an absolutely amazing time.  We then spent the night at Hotel DeBrett with a complementary breakfast on Saturday morning.  A truly unforgettable 24 hours.

When I found out I had won I felt quite strange about accepting this prize, because I don’t perceive myself as that extraordinary.  Women I know in the international Inflammatory Breast Cancer ‘sisterhood’ are doing so much more than me.  There are women who are  battling metastasis like me who are still trying to be really hands-on mothers to their small children and acheive other things that they feel are important not only for themselves but for others.  Some are still trying to work full time as well as parenting.  I, in contrast, have only a 23 yr old daughter still living at home and am doing only two papers at university.  My husband is doing most of the household chores as I , by nature, am actually more inclined to be a slob,  and he is giving me the freedom to spend the energy that I do have on things that I really want to do.  To me that seems to be almost more selfish of me than extraordinary.

Likewise the women that are my best friends at university are women who see a need and automatically work to fill that need, they don’t do it for accolades or to win competitions but just because it needs to be done, and thats why I do what I do too.  I know a lot of women like that in the other circles of my life too.

To all the extraordinary people in my life – this prize is for you too.  I just wish I could have taken you all with me.

Gold Coast Holiday

gorgeous view from our holiday apartment

I must admit we got very lucky with our holiday apartment.  We had booked a 7day discounted family accomodation package and although we knew the apartment was right on the beach I was sure for the discount price we would get one of the units without a good view.  Imagine my surprise when on arriving we got told we were on the 32nd floor with views of both the beach and inland

view inland from Surfers Paradise

being so high up was a little challenging for YD but we quickly set boundaries as in ‘no taking anything out onto the balcony’ and such like.  With the height also came a lack of traffic noise and all we heard most of the time was the noise of the waves.

We had fun at all three themeparks but it was quite overwhelming for YD so we were kept busy with her although a few meltdowns were unavoidable.  She also wanted to go shopping but so many new shops, different money etc also was confusing for her.  I think we all came home a little more tired than when we went.  She did enjoy herself overall so thats all that counts and is already planning to go back again – or so she says.

feeding the Kangaroos at Dreamworld

YDs excellent photo of tiger shaking off water after being in the pool - Australia Zoo

Dolphin show - Seaworld

We managed to have wonderfully sunny weather the whole time we were there.

I managed two mornings on the beach, but due to time constraints switched to swimming  the remaining mornings.  I would do several laps freestyle of the small indoor pool YD joined me in that pool until she discovered the spa pools and from then on she would have a spa while I did my laps.  Pampered young miss!!  🙂

I managed to meet up with my sister and niece the first night we were there and see family friends M, R, and L on the Saturday and also catch up for a coffee on Monday with my IBC internet friend P – we could have talked for hours, but we had left MD looking after YD and P also neede to get back to her kids.

We definitely achieved what we wanted to on this trip but next time I think I need a little less hectic holiday.

It’s not my holiday

The holiday I am going on next week is a very important one.  It has been two years since we first came up with the plan and because of treatments and other time constraints we couldn’t do it until now.  I have pushed my oncologists to allow me to take this trip but it is not ‘my’ holiday.  It is YD’s.  She wanted to go to Dreamworld and she wanted Mummy to be the one that took her.  Because of her autistic tendencies , as far as she was concerned it wasnt going to happen unless Mummy was coming with her.  So we have made it happen,  OH and MD are coming to do a lot of the actual looking after her at the theme parks(Dreamworld, Seaworld and Australia Zoo – MD will go on a lot of the rides with her) because I know I will just not be able to keep up with her.

With the amount of fatigue I am feeling I am worried about how fast, or not, it will wear off on my week off xeloda.  People have been advising me I can hire wheelchairs and/or mobility scooters.  I really dont want to go down that route but I might have to – I really hate that thought!!  I will push myself because this is such an important holiday for YD but I am concerned about how I will handle it.

The  things I want to do for myself on this holiday are meet up with P another IBC lady,  see my sister and niece and meet up with old family friends who used to live down the road from us.  I also hope to have a few minutes each day to myself to swim in the apartments indoor heated pool to get my exercise/fitness back up.  With the issues with the xeloda side effects on my feet there are not a lot of other exercise options.  I also want to spend a few minutes each day alone on the beach where I can just sit and breath in and out.  I doubt the beach will be deserted but by alone I mean without anyone I know.  Hopefully OH and I will get a chance to do a few things by ourselves if we leave YD with MD but it is very dependant on YD’s behaviour.  She is so excited about this trip but I am so aware that that excitement can turn, very easily,  to over-stimulation,  and overwhelm her.

This holiday is going to be hard work for the rest of us, but if we can pull it off and give YD the holiday of  a lifetime it will be worth it.

Feeling the love

This was actually supposed to be the first of two companion pieces ‘Feeling the fear’  is the other one.  I had started to write this when I got the news from twitter about Sarah.  I no longer was in the right frame of mind to continue writing this post and wrote and posted ‘Feeling the fear’ instead.  For those of you who come here from my link on facebook and are thinking to yourselves that you didn’t see a link to that post – don’t worry there wasn’t one.  I didn’t want comments on FB about what I wrote.  Again I would reiterate that I would rather have comments here than on FB.

As you know I’ve been feeling a little sentimental and weepy lately.

But…

I feel loved.

Even when fear and darker thoughts crowd my mind, that is what pulls me through it.  I am loved by my family, OH supports me in everything I do, and my girls show they love me every single day.  Often it is not spoken but on Mother’s Day when MD put as her FB status ‘ I love you, Mum xox’ it made me feel really good.  Not all 23 yr olds have that relationship with their mother (and/or are willing to admit it to ‘the world’ on FB)  Likewise OD writes about me on her blog and I can feel the love there as well.  Even YD ends every phone call with ‘Love you’. 

Through this journey with “Gertrude”,  I have felt loved by my wider circle of family and friends and I think deeper and more meaningful relationships/friendships have developed because of it.

“And I loved deeper and I spoke sweeter,
“And I gave forgiveness I’d been denying.”

Are some of the lyrics from the Tim McGraw song I mentioned in ‘Feeling the fear’ and I think they have been true for me. 

I even feel loved and supported by my University classmates.  While I have made some very close friends there as well (AW, N, AE), there is also an underlying general message of support from all my classmates. EC randomly proclaims ” I love you, Jenny” and others show their support and caring in lots of other ways.  They are empathetic enough to know that we don’t talk about ‘Gertrude’ at Uni unless I bring it up, but show they care all the same without being overly sympathetic as I pointed out in this post.

I have a few older school or church youth group friends  from my teenage years like ‘the  MRD’,  R and K who let me know they are thinking of me and holding me close to their hearts.  (And this is 30 years since we were in high school)

I know everyday people love me, which for half my life I believed that not that many people would, if I let them see the real me.  This blog has allowed me to show who I really am and I now know I am loved for being exactly who I am, warts and all.

Love and support has also come in the shape  of the internet, other IBCers and other Breast Cancer survivors that I am friends with through the IBC mailing list, our IBC facebook group, other Breast Cancer bloggers, Facebook and twitter users.  Through all these avenues we become real friends as close as any real life support group as we share such intense shared experiences. 

As Shelli of “The Dirty Pink Underbelly” blog wrote as a comment on ‘Feeling the Fear’ on “Get Out Gertrude” “:-“I wonder if it brings me permanently down, further and further down, as my search for support has turned to seeing friends die. ”  We run the risk, especially amongst those of us that are metastatic, of seeing these friends die.

But as Judy of “Just Enjoy Him” wrote, when I crossposted the same post to “Mothers with Cancer” , about the loss of Sarah to our community:- “I am so very sad about Sarah’s death. Just so so sad. :( But I’m glad she was in my (online) life for the time that she was”. 

I totally agree with Judy. I would rather have these women in my life for a short time than not at all.  Having IBC and/or metastatic cancer can be a lonely experience, even if you are surrounded by friends that love you, because of the enormity of your situation, and that these other women understand.

Because of this love and support I have decided to become a little less anonymous.  As you can see above I used my real name, I am partially doing this as in a month or so I will be posting links to a video interview I did on having IBC,  where you will get to see the ‘real me’ .  I will still use abbreviations or pseudonyms for everyone else as I am still very aware that this is my story not theirs.

the shot below is one of the photos that I had taken when I went for my Body Shots  photo shoot – its amazing what they can do with lights and makeup

introducing the ‘real me’

I have just realised this is exactly the same outfit that I wore for my video LOL – it is one of my favourites