Growing Old Is A Privilege

Being diagnosed with a life threatening illness evokes a lot of powerful emotions.  The big ones being fear and anger.  The fear of not knowing what your body will be put through, the fear of not knowing what lies ahead, whether you will not make it or not.

Anger at having dreams put on hold or snatched away, anger at the specialists for their pessimism, the statistics they give, for giving up hope.

A friend told me we need to generate our own hope.  I like that.

Then there’s sadness and isolation.  It can be hard sometimes listening to friends make plans with the luxury of a more certain future to count on.  I don’t think people realize how lucky they are.  To know that feeling again would be like heaven. 

Before I got sick I used to take my health and life itself for granted.  I see it in others.  Though I am grateful for the kick up the backside cancer has given me.  It’s made me treasure my time a lot more.

People often complain about getting old.  People my age even!  I find this difficult to listen to.  What they don’t seem to understand is that growing old is an absolute privilege.  I want nothing more than to make it to my 30^th, 40^th, 50^th and so on.  It’s a surreal feeling not knowing if you’ve had the last birthday you will ever have, or whether this Christmas will be your last.

To visit previous blog entries, select posts from the archives on the right hand side of my blog page or click on “older posts” at the bottom.

Who's the sick girl?

Who is this sick girl staring back at me in the mirror?

Her eyes are lifeless, her face pale, her tongue swollen and ulcerated.

It frightens me to look at her.

Who’s body is this?  I do not recognize it as my own.  Swollen and puffy.

Loss of independence.  I can’t even bend down to wash my feet and put my underwear on.

I can no longer get myself to the toilet.  Shame and humiliation as the nurse collects the used commode.

Loss of control.  Reliance on others.  Degradation.  Vulnerability.

Life on the Ward...

Let's catch up!

It's been a few days since the last blog entry.

Ange has significant memory gaps from the last three weeks or so. She really doesn't have a great memory of what happened from the time she got really sick on the Haematology & Oncology Ward and transferred to the High Dependency Unit (HDU).

Its interesting to look back at the blur that has been the past few weeks. There really have been times when Ange was close to leaving us, she has said on a number of occasions that also with the benefit of hindsight, she didn't realise just how close things really were.

So what HAS happened since the last blog? Well, we have been moved to an amazing new room on the ward. This room has a private ensuite for Ange with shower and toilet, a separate little kitchen with a fridge and a proper pull out bed beside hers for someone to be able to easily stay the night.

Since returning to the ward, Ange has not spent a night alone - yay.

We have been able to bring up takeaways and all hang out together as a family, with Ange, in her room. Oh yea, and we got clearance for a little fluffy white dog to visit almost every day. It is fair to say Holly has won the hearts of the nursing staff on the ward also.

Slowly but surely, the progress has increased with different tubes coming out and less fluids going in. Ange's ferocious appetite has slowly but surely started to return and she is on solid meals, the last tube to go is her TPN (Total Parental Nutrition) which is still feeding essential nutrients directly into her blood stream; the update on this, is that it will be coming out very soon.

The rumours are strong that Ange will be discharged from Hospital as early as tomorrow! This is depending on a couple of factors, but at the very latest it will be Wednesday.

As I type Ange has been told that the specialist would like another bone marrow biopsy to be completed, which will help in the decision making process for the big picture.

This is a terrifying time, not only is the procedure incredibly painful, but we always fear the results will be bad and the huge emotional blow from that becomes very difficult to pick yourself up from.

I maintain, as I have said many times previous that I simply cannot accept that God is a cruel puppeteer, who has brought Ange back from so many close calls, simply to let it all go downhill again. I believe there is a plan for Angela that has to include contributing love and care for so many people, and a house with a puppy and a garden (at the very least).

I must believe that the ultimate miracle is just around the corner and we can all get on with having a fantastic life together with friends and family surrounding us for many years to come.

Bring on the discharge from hospital...

Improvements keep coming

Well Ange continues to get better. 

The over active bowel is still with us at the moment though... it’s gone from, "nup, not gonna do anything", to "whoa this is fun, I'm, gonna work every half an hour or so"

Yesterday was a mixed day. It started well with a walk down the corridor, much to the amazement of the nurses in the nurse’s station, I even heard one whisper to another "hey, there's Angela". After that, the gut pain kicked in and Ange got proper sick of having to go every short while. Understandably, she became flat out pissed off with everything. 

But like every time anything gets her a bit down, my amazing girl shook it off and simply got back to getting better.

Last evening was nice, Poppa Ron, Mumma and I got pizzas and came and ate dinner with Ange, and she really enjoyed having her family around. There may or may not have been a cheeky bottle or two of contraband snuck in to the hospital also.

Well Ange must be on the mend, as in the night when her mum wouldn't wake up, she threw little pill cups at her. Then upon successfully waking her mum, Ange asked for tea and toast at around 2am.

So yep, Ange is slowly getting back to some eating and provided the pain is kept on top of, she is a bit happier.

Speaking of happier though, happiness comes in the shape of... no not a fiancé, or a mum or a dad... it comes in the shape of a little white fluffy pooch. Yep, today was the second phase of Operation "Sneak Holly into Hospital". As I type, mumma Angie and Puppy are snuggled up fast asleep on the bed - aaaaah bliss.

On this note also, thank you so much to Johanna, Nick and Spike for looking after Holly and giving her a good grooming and pedicure, she looks amazing!

Ange continues to be tired and sore, but she is following the pattern of being better one day than the previous.

Thank you to everyone for you continued love, support and prayers!

Ange and Co.

Miracles DO happen...

It has been another day of ups and downs... but definitely mostly ups. 

Ange has continued on the train that is progress towards health. The NG tube known as Cindy has one last night to prove she is necessary or tomorrow she comes out. It is becoming apparent to us that Ange's stomach has finally started talking to her (now functional) bowel. No foul stomach fluid has come out of either Cindy or Ange's mouth for some time now.

Tonight's specific prayer theme is: lessen the now OVER-active bowel and eliminate nausea.

Tonight Christine, Ron and I spoke about things over dinner and reflected on some of the events of the last few weeks. We would like to share with you some of the things we believe are simply miracles that have led to our amazing Angie still being with us.

If you have followed proceedings so far, you will remember that a bleed on the brain and subsequent pressure, nearly took our girl about three weeks ago. But for a bag of fluid containing steroids that relieved the pressure, Ange was 15 minutes away from undergoing surgery that could have spelled very bad news indeed.

We wondered if going on a family holiday to Samoa could have contributed to matters - we then reflected on something told to us by the medical team; if Ange was in NZ and presented to hospital with her chronic headache, once realising that it was a current brain bleed, they would have operated immediately (have I mentioned enough times what this could well have meant). Because the bleed stopped and clotted of its own volition, they decided not to risk matters and surgery was deemed only a very last step - miracles #1 & 2.

If the brain bleed had not happened and we had not had ended up at hospital when we did, Ange's cancer was so rampant that her specialist said it would have taken her within 1-2 weeks to die - miracle #3.

As a result of neutropenic colitis, subsequent to intensive chemotherapy; Ange suffered dangerously low blood pressure, excessive heart rate, and kidney and liver concerns; all along with a seriously inflamed bowel which could have burst/leaked/twisted/stopped forever. Ange's blood cells have restored themselves up to three times faster than is usually the case post chemotherapy. Her specialist told us this afternoon that her return to close to normal white blood cell counts has allowed her body to fight the inflammation, which also saved her life in the last few days - let’s call this miracle #4.

In between times, other people/drugs have come into Ange's path, such that we count them also to be miracles.

For us, it has become important to acknowledge these things and ensure we continue to keep our focus on what is in front of us, as looking too far ahead is emotionally exhausting.

Ange continues to get better, but she is far from "out of the woods" and is continually ever so tired, in pain and feeling sick.

I am sorry to harp on a point, but thank you all for your support of Ange and the wider support team – keep praying for the ultimate miracle.

Love to all, Ange & Co.

To visit previous blog entries, select posts from the archives on the right hand side of my blog page or click on “older posts” at the bottom.

Specialist's Advise, a Shower and Back to the Ward

"Now Angela, to get better, we need you to stop getting worse" - Ange's specialist on admission to HDU

For those of you who know Angela well, know that she is not the best person at taking instruction or simply being told what to do! Well one of the very big changes in her recently, is that not only is she starting to listen to her specialist's “brilliant advice” (above), but she is even listening to her family and doing as she is told.

This morning Ange has had her first shower with assistance of a commode chair and fiancé willing to get wet. Currently she is sitting in a lazy boy, looking out the window with a fresh glass of ice water - this is close to the picture of bliss for Ange at the moment.

We have had no further update on any pending move to the ward but everyone seems to be pretty happy that things are going in the right direction.

On the theme of things moving in the right direction, we are still waiting for her guts to kick into action as its been up to five days without anything.

We continue to be thankful for all the good news, still keeping in the moment and savouring the progress.

As always, thank you so much for your support, we'll keep you updated as things progress 

(Later in the day…)

Really quickly... we've made it back to the ward. Not only that, but I am happy to announce, the bowels have come back to life! Team Ange has never been so genuinely so excited about something traditionally not spoken about.

Thank you all for the prayers and support, may all the little miracles keep coming xx

To visit previous blog entries, select posts from the archives on the right hand side of my blog page or click on “older posts” at the bottom.

Billy the Pain Relief and Hair Loss

"Today's been a good day I think" - Angela Smith, 10 Nov 2013

Billy the pain relief button has been Ange's bestie for the last couple of days. Talk of him being taken away has caused mixed emotions, happy that it is an indicator of improvement, but sadness because he was such a good friend that helped Ange through a torrid time!

But Ange is right, today has indeed been a good day. On the whole, while she is still in pain (predominantly her abdomen and mouth), the pain is less.

This afternoon Ange moved from the bed to a weighing chair, then back to bed and then a few rolls onto each side while Mother and fiancé picked at the head hair, which is now starting to fall out good and proper. (Mumoose showed significantly more stickability than the author who got bored after about two minutes, despite starting the process!).

One new-ish issue is the now considerable fluid retention. When she was last weighed on the ward Ange was 51 kg. Today she weighed 61 kg (yes yes, I know you're not supposed to talk about a girl's weight or age...), anyway take into account that Ange will have lost muscle tone, it means she is carrying in excess of 10 kgs of fluid! Her lady bits have even swollen so much that it hurts a little to sit down (again, probably an issue usually to be avoided, but the "chief blog censor" thinks it puts the matter in perspective).

She remains nil by mouth and was told today in no uncertain terms that she is only allowed three cups of water a day!

There are strong rumours circulating through the Waikato Hospital HDU that Ange will be moving back to the Oncology ward tomorrow - the strongest indication yet that things are on the mend for this part of the journey at least. The bowel, while not yet up and running has at least started to sort itself out to the stage where Ange’s obs remain stable.

Look after each other and keep up the support - today's prayer topic is specifically for Ange's first fart, followed by a cheeky poo!

Love to all, Ange and Co.

The start of the hair picking process

Old Man Ange - Hair picking got a bit boring

To visit previous blog entries, select posts from the archives on the right hand side of my blog page or click on “older posts” at the bottom.

Some Improvement in HDU

Well Ange continues to improve.

Her tummy is still very bloated however, she is in some pain but now has her own pain relief button - PCA (Patient Controlled Analgesia)

So the main issue at present is that the chemo and subsequent neutropenia has caused her bowel to become massively inflamed and it has gone completely on strike. For a while Ange's bowel was so big it was pressing on all the other organs in her little abdomen, this is why it was so important she had a nasal-gastric tube inserted to relieve some of the pressure; even now Ange looks about 12 weeks pregnant. Not only is her abdomen swollen but she is also retaining fluid in other parts of her body such as her legs.

Ange is currently nil by mouth (due of course to her bowels not passing anything down the line), so she is being fed a small amount of nutrients via her veins.

To put her current situation in perspective, Ange is currently hooked up to... fluid, a catheter, pain pump, steroids, antibiotics, food (TPN), a nasal-gastric tube and another pain medication when required. This morning her nurse said she had four pumps up and running administering different medicines. 

All the while Ange is also connected to a computer that constantly monitors her heart rate, blood pressure, oxygen saturations and aspiration rate! 

On the whole though, Ange is better than yesterday and significantly better than the day before that.

Ange and Mumoose even insisted that I go out last night, and Ange gave me strict instructions to not go home until my feet were sore from dancing and my belly full from beer. Thank you so much friends for their assistance with facilitating this directive at different stages of the afternoon/evening/night/early morning.

Ange is now talking a lot more and even kept her mum awake last night with constant chitter chatter, albeit a lot of this is hallucinations. She just told me that she often feels like someone is sitting on her shoulder whispering in her ear (no, this isn't actually me).

Still a way to go, but we take great joy in small victories!

Here's hoping for a bit of bowel action in the next day or two (who would have thought we'd all get so excited by a poo and a fart?!).

Love to all, Ange and co. x

All hooked up!!

Pregnant belly...

Toxic Gunge

Today is a bit better. Ange is still in excruciating pain BUT, kidneys and liver are functioning much better, heart is under control, blood pressure close on perfect and blood counts on the rise after being decimated by the chemo.

Specialist visited and said that while she might not be feeling much better, Ange is actually better than yesterday (thank The Lord! No, really)

In the night Ange hit vintage form when she quoted Team America to a young surgeon, needless to say he cracked up!

She was actually recalling when her nasal gastric tube was inserted yesterday (this is shared with madam's permission), vomit and all manner of badness flowed from her mouth at such a rate, and down the tube filling up a collection bag is less than a minute. Poppa Ron described it as being like a scene from the exorcist... yep, she's good times in the HDU, Waikato Hospital!

I'm still being bossed around and last night the girl even managed to send late night texts to her Mumoose with bossy instructions about the care and upkeep of Holly in her absence.

So proud of this girl, she is truly a remarkable woman!

Nasal-Gastric tube draining toxic gunge from the gut

Collection of foul-ness

To visit previous blog entries, select posts from the archives on the right hand side of my blog page or click on “older posts” at the bottom.

Long nights and long days...

It’s been a stressful 24 hours, here is a summary:

·        Extreme abdominal pain and stomach bloating.

·        Finally relenting to nasal-gastric tube being inserted which has released over 2 litres of badness from her stomach, easing the pain just a little.

·        Two cardiac incidents with heart rate getting over 200 bpm (less than ideal).
      Insertion of a new PIC line.

·        X-rays and CT scans.

·        Medication that heavily sedated her so they could stop her heart and start it again.

·        Been poked and prodded by a million different fingers.

Yep, a long while for sure.

Mum stayed the night and is racking up in excess of 36 hours in hospital!

She sleeps as we talk by her bed. What an amazing woman to have come this far and still battling hard!

I have whispered in her ear that she's made her point now and it's time to get better as her family and friends are getting exhausted.

She's just woken up and given me a bit of stick. It either means she feels a tiny bit better or she's just really good at being bossy and cranky, even in her sleep.

Love and thanks to all from the bedside team (Ron, Christine & Raymond)

New PIC line being inserted (Ange has no recollection of this despite her being awake during a lot of it)

Swollen arm from blood clot in PICC line

To visit previous blog entries, select posts from the archives on the right hand side of my blog page or click on “older posts” at the bottom.

Off to the High Dependency Unit!!

Ange moved to the high dependency unit this morning. 

She has a bug in her blood, she got very dehydrated and her blood pressure plummeted. Just means they need her in a unit where they can keep a close eye on her. She has responded well to fluids and they are giving her some kick arse antibiotics.

I have told her off for continually trying to worry us.

She is pretty out of it at the moment - a side effect of a drug trying to stop her nausea.

Ange has had a terrible day with pain, vomiting and other stuff; she is such a superstar to still be battling as she is though, I couldn't be more proud.

The docs believe she has neutropenic colitis (an inflammation of the colon due to having no neutrophils)... more simply put, the result of having intensive chemotherapy. Her specialist is again worried, but not tripping over himself with concern and is satisfied that the other parts of her body are OK (e.g. vital organs etc.).

Plan is to try and get control of pain and let her bowels rest as best as they can while her blood counts return.

Funny story to finish, she has been hallucinating today a little due to the dehydration and drugs. She looked at her doctor to say something just before then stopped, when he pressed her for what she was going to say she replied "no, I was just going to tell you I went to Chartwell for lunch with your Registrar, but I don't think that happened". This is a follow on from asking me if her and I went to the pub last night; I told her we tried but she didn't have ID on her so we couldn't get in. She eventually figured out I was being economical with the truth.

(With the benefit of hindsight, the doctors did a fantastic job of hiding how concerned they really were. At this time, Ange was very very sick and in serious danger)

To visit previous blog entries, select posts from the archives on the right hand side of my blog page or click on “older posts” at the bottom.

Hey Angie... (Raymond)

Hey Angie,

Those dreaded calls or texts that things have gone a bit downhill overnight are really starting to get a bit old now babe.

As I sit next to you in HDU, I see the machines you are connected to and look over to you sleeping away. I am again left to my thoughts and what seem to be, ever increasing voices in my head; you know the ones... one that says everything will be ok and the other that says the opposite (I still can't acknowledge that voice out loud).

A watched pot never boils, or so they say. Maybe if I sit with you for 24 hours a day, seven days a week you might not deteriorate any further and in fact, you might even get better faster.

I can love you back to full health if you want, that's easily done.

We have a puppy that needs her Mum at home, and a future planned that we talked about just last night. Remember? The hanging swinging tree near the spa pool in our back yard, the fully fenced section so Holly can run around.

I've also been thinking we are going to need a massive deck for all the dinner parties filled with laughter and happiness and silliness and people trying to solve the problems of the world over one of our bottles of red wine.

I have decided this has gone on long enough now my Angie, time to get better. Time for your cancer to go away forever, time for me to take you home and time for us to start the next phase of our lives together (I have estimated the next phase to take approximately 45 years... until you get too old and cranky and bossy).

I don't care what the doctors say or what their prognosis is, I need to maintain my belief that you are going to beat this.

Right, enough said. On with the getting well... are we clear?

To visit previous blog entries, select posts from the archives on the right hand side of my blog page or click on “older posts” at the bottom.

Guy Fawkes

Well Ange has got a bug in her blood and an inflamed colon which is causing her most of the pain. She still has ulcers in her mouth and probably all the way down the digestive tract. Doctor has been in and says this is very much just par for the course when you have undergone intensive chemotherapy. Problem is, it is painful any time she eats which doesn't exactly encourage her to snack on anything.

Still, after a night with Mumoose and plenty of pain killers she is a tiny bit better than yesterday, albeit she is still sore and miserable.

The positive is that she has no cancer cells in the blood or spinal fluid for now.

Ange will be neutropenic for at least another two weeks which is a long time to leave the body vulnerable to bugs and infection.

Guy Fawkes Night tonight so hopefully we can set Ange up in the lazy boy in the corner of her room so she can look out the window at the fireworks! Whoop whoop.

In case it has been missed on anyone, yes, I am a little bit smitten with my fiancée; on that note as I sit next to her and look over at her little semi-bald head, I think she looks sooo beautiful and super cute, she is very drowsy and falls asleep mid-sentence (my conversation and jokes can be a bit boring though).

November 4

Ange is in a lot of pain in her tummy mostly, with also a sore throat and tongue due to ulcers. She has had an x-ray on her stomach which has ruled out anything too sinister. Doctors believe it is either an inflamed bowel or infection or similar. Antibiotics have hopefully started to work in the last few hours and they have upped her pain relief. 

It's amazing, as miserable as she is she is still gorgeous!

While the doctors are keeping a close eye on her, they aren't tripping over themselves with concern. We believe this is just comes with the territory for someone with zero immunity.

Mumoose has been by her side this afternoon and is booked in for the overnight stay; where oh where would we be without our Mum's?!

I know so many of you are feeling helpless and hopeless when there is nothing you can do. I guess we are lucky in some respects that we can at least sit and hold her hand and kiss her bald little head. The best thing you can do is send your love and prayers.

Loads of sleep and rest (and painkillers) are the order for the next couple of days at least.

To visit previous blog entries, select posts from the archives on the right hand side of my blog page or click on “older posts” at the bottom.

The Effects of Chemo Kick-in!!

Awwww, my poor girl is really feeling the effects today. This is not unexpected, but it still sucks to see it.

I have received a list of things that hurt at the moment, so far we have throat, tongue, tummy and arm. Ange has a clot in one of the tubes in her PIC line; this is causing a lot of pain and the doctors are just devising a plan. When her nurse asked if she needed anything, Ange asked for the most amount of pain killers (please).

Due to her feeling so poorly and having zero immunity, she has been banned from having visitors outside of immediate family, just for now at least.

As mentioned, feeling like this is not unexpected and is more than likely just the side effects of intensive chemotherapy. Her specialist said on Friday that she will feel worse as they now weaning her off the steroids she was taking to assist in keeping pressure off her brain. 

I am personally happy about her being weaned off the steroids as she was starting to get significantly bigger guns than me and I knew a case of "roid rage" was just around the corner.

Just so you can picture it a little, Ange is down one end of the ward in a special area for patients similar to her. To get here you have to go through two sets of doors and only one set can be open at one time (limiting the dirty air into the area). The area is fitted with state of the art industrial air filters and there is a pressure gauge above the door to each room. It's not as full on as it sounds, but that's some of the precautions they take.

You'll be pleased to know however, that despite feeling like shite, my Angie is still able to boss me around and tell me off for things I do wrong - it's comforting for me that way.

Thanks as always for the prayers and support (you'll probably be sick of hearing me end like this, but it really does mean so much to all of us).

Do me a favour and find someone you love and give them a big kiss and a hug and remind them how much they mean to you.

What anyone else would do

I've been overwhelmed by the inspiration people have drawn from my journey with cancer and adversity.

I still find it difficult to understand / grasp and therefore claim.

I feel like I'm only doing what anyone in my situation would do.  I don't think there is anything special about me.

I feel truly humbled and grateful that people have gotten something valuable out of my experience.

To visit previous blog entries, select posts from the archives on the right hand side of my blog page or click on “older posts” at the bottom.

Off it comes!

Well its official, Ange is as stunning without hair as she is with hair.

Today was a fun day, a couple of family and friends gathered around the hospital bed to help out as Ange had her head shaved. The Smith brothers took control of the scissors and clippers, Ian Smith said it was probably pay back for something!

We drank bubbles and shared in just another step in Ange's treatment. Thanks so much to Mark and Kim Stuttard for bringing the helium balloons. Thanks also to Christopher Lane for coming and taking lots of pictures and video of the occasion.

Ange was also joined by her future sister in law, Robyn who helped chalk up a storm. Of course, no event ever runs smoothly without Mumoose, things would not have gone so well - Mum's really are soooo clever.

Fear not, the new neck tattoos were courtesy of a vivid and while they took a little scrubbing, they have been successfully removed.

Today Ange has begun feeling some of the physical effects of Chemotherapy. She is also feeling a little emotionally down and asked me if I could take her home (oh if I could!). I will never be able to understand just how tough it is for her being stuck in a small room without her freedom. 

If you want something specific to pray for today, it's Ange's emotional health.

Lots of love to all! x

   

From one sibling to another.  Makeshift wig.

Cheers!

To visit previous blog entries, select posts from the archives on the right hand side of my blog page or click on “older posts” at the bottom.