Monday, March 17, 2014

Discharged!

We sit waiting for the doctors to do their morning rounds on the ward.  We’ve been in hospital over a week now.  Headaches and fevers brought me here for more investigations and treatment.  It’s been a relatively straight forward stint in hospital with not too many complications.  The side effects of chemo this time haven’t been as bad although I have really struggled with arising emotions and the realities of my situation.  Usually I can maintain a certain degree of positivity and cheerfulness but this time I have felt really quite low.

There are pleasant things about staying in hospital…… I particularly enjoy getting to know all the different nurses and doctors and finding out about their personal lives and what makes them tick.

However, when I feel like I’ve done my dash I tend to make this point pretty clear.  My bags are packed, my bed is stripped and I’ve put on my brightest t-shirt, widest smile and my most hopeful eyes.  I am ready to go home.

I answer all my specialist’s questions honestly and let him examine me and try to be on my best behaviour while I wait with baited breath.  Is today the day he will let me go home??  This is always a dangerous game to play with myself.  Whilst putting on a very convincing appearance of being ready to leave I have to prepare myself for the disappointment of being held behind longer.

It’s a funny thing really.  It’s just a room in a building that you hang out in for awhile and yet I’m always so desperate to leave.  Once again, this highlights to me what feels like a game of freedom; that is part of being sick.

Good news!  I am released back into the world of the living and the free.  I will still be required to take things easy as we watch to see what my blood counts do over the next week or so.  I will return every second day for blood tests and possible blood transfusions.  In the meantime, off I go with an armful of antibiotics and strict instructions to return should any problems resurface.

So it’s back to my complimentary therapies and wedding planning while I wait to see what Hugh decides is the next best step in my treatment programme.  At this stage the options are repeating another round of chemotherapy in hospital as I’ve just done or trying me on some chemotherapy tablets at home in the hopes it will keep the leukemia stable.

For now, it’s about resting and enjoying the comforts of home J






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.

Thursday, March 13, 2014

Quite a few tears this morning

I'm feeling a bit down this morning

My breathing is getting a bit better but I'm tired of sleeping sitting up straight hooked up to a huge amount of chords with my only distance of freedom being to the commode next to my bed. I'm awake and asleep with an uncomfortable oxygen mask on.

I'm doing this for my wedding. After that I'm not sure I can do these stints in hospital anymore. I'm at the stage, or perhaps just having a moment, of thinking how long should I be fighting the inevitable? Should I have another battle in hospital just to extend my life by a couple of months each time or do I give in and accept that time is short and just to enjoy it with those I love? 

Option two is beginning to be more and more appealing and is starting to make more sense.

Option 3 -  perhaps I should eat some breakfast and not worry about it for now? Hmmm three is probably a good place to start.

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

Moments later after all these thoughts my specialist came in to visit me. During this consult we had a conversation we've never had before. If my health all of a sudden goes down hill do I want to be put into critical care to try and be saved or do I want them not to intervene and be let go?

The fact that we're at that point is pretty upsetting and didn't do anything to settle my earlier thoughts and emotions. In fact it has me thinking I'm pretty close to the end. How do you make a decision like that? There will always be a part of me never willing to give up. I'm not so much frightened of death, I'm more so frightened of leaving my family, partner and home life behind.

I don't want to die a miserable painful death but I don't want to go down without a fight. 

Actually I just don't want to go down at all!!!


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 Easy Way and the Hard Way

A piece of advice for you… if you ever climb a mountain, don’t climb it with Angela.

You’ll be looking at a gentle incline ready to take a sip of water before setting out, when Ange will dig you in the ribs and take you up the sheer face.

And so it is with Ange’s health and healing. There is never a single problem or an easy route, she likes to have multiple issues going on all at once.

And that brings us to today. Today we have found ourselves again in the Waikato Hospital, High Dependency Unit.

A hospital admission that started with an abscess in the nether regions and a rising rate of cancer cells in her system has turned into nearly surgery, a round of intensive chemo, scans and more scans, being hooked up to oxygen and a visit to as many wards on the hospital as she can think of.

So the first round of chemo (first of three this visit), has been and gone. When chemo is administered there is a rapid break down of tumor cells (along with other good cells). To try and flush all these nasty cells out of the body, they give Ange heaps of IV fluids to get her peeing also to relieve the liver and kidneys who are now working in overdrive.

It appears her body hasn't managed to flush all these toxins out of her system and some of it may have settled in and around her lungs. Lungs, I don’t need to tell you are pretty important in getting oxygen into your blood stream and around all your vital organs, not the least of which being your brain.

Well with this build-up of fluid around her lungs, Ange’s breathing became rapid and shallow and a cause of concern.

So the solution has several facets to it (1) increase fluids and give Ange a diuretic to make her pee lots, (2) give her steroids and more antibiotics, and (3) hook her up full time to saturated oxygen and get her to HDU where all of her vital observations are continually monitored with central alarms should things not be going well. Ange also has nearly one on one nursing which helps with Christine and I’s stress levels.

We are all hoping for just a short stay here, and compared with the last visit to HDU she is much healthier to start with.

Still, it makes for stressful nights for her family. We communicate via text keeping each other updated and (especially in my case) offering our expert opinion on why things are happening and what could be done to fix everything.

And through it all, our brave little Angie just keeps on rolling along. She rarely complains.

To finish with a little story. Before coming back to hospital, I had to put Ange on a wedding planning curfew as I would wake in the night and bust her on her phone looking at cakes and dresses and reception ideas etc. I suspect that this hospital caper is all just a rouse to allow her to plan at will. I have it on good authority that after a 4am text was sent to her mother the other night, they were both later seen sitting up in a hospital bed looking at Mother of the Bride and Wedding dresses!

Well, as always we all thank you for your support and ask that you keep Ange in your prayers.


Lots of love from us all.

Raymond's little cow...considering ear tag instead of wedding ring

Having a well deserved rest in HDU

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.

Monday, March 10, 2014

A Clear CT - hooray!

A bit of good news.....the CT scan came back clear though Hugh (specialist) thinks the lining of the brain may still be involved.  But no bleed so that's awesome! :)

I start chemo today and will possibly be doing two rounds of it.  The regime is two doses every second day so I will be finished on Saturday and then will have a little break before starting the next lot.

An MRI scan of my pelvis has been arranged for this morning to check things out down there so we can figure out how much of a priority surgery is.  Understandably, Hugh isn't too keen on the idea of cutting away at me with my low platelets and low immunity.

After all the trouble with the lure in my hand yesterday it will be replaced with another PICC line in my arm anyway.  This means all the medical goodies can be given to me via that.

I reminded Hugh about my wedding and he agrees that it is fairly important that I be there :)

Here's hoping the chemo is really effective at knocking back the leukemia!  And hopefully I don't gain another 15-20L of fluid like I did last time and end up looking like a giant marshmallow in my wedding dress! Ha!

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.

Here We Go Again

Once again, I find myself locked away in hospital. 

After suffering from bad headaches for the past couple of weeks it was decided investigations needed to be done to rule out another brain bleed. 

In addition to headaches I have been having fevers for the past few days due to an infection my body has been fighting.  A compromised immune system as a result of the chemotherapy injections I have been having, was always going to lead to my body being susceptible to infections.  It just so happens the source of my infection is up my bum!  I have developed an internal abscess, which has caused a significant amount of pain over the past week.  Probably worse than that though is feeling like every man and his dog has had a good look around the area.  Have I mentioned before that all dignity goes out the window when you are a sick person?!

Six attempts of putting a lure into my hand shared between three nurses has resulted in a fairly sore hand but also access to my veins for some good strong antibiotics to be administered to try get the infection under control.  It feels like it has been a day of being poked and prodded!

Surgery under general anaesthetic may be scheduled to help remove this problem but first of all we need to find out what is going on inside this skull of mine.

A CT scan of my head was performed earlier today to check for any signs of another brain bleed.  I will receive the results in the morning.  Fingers crossed it comes back clear to save me from having chemotherapy injected into my spinal fluid again.

Blood test results from over the past few weeks has sadly shown that the subcutaneous injections of chemotherapy that I have been having at home hasn’t been effective.  My specialist has decided to give me a course of IV chemotherapy at a higher dose while he has me here in hospital.  The risk of this is developing neutropenic colitis, which landed me in the high dependency unit last time.

I’m praying for a clear CT scan, an effective round of chemotherapy and a strong body to handle treatment without any complications.

Raymond and I have set a date for our wedding and we are both ridiculously excited about our special day.  I desperately want to get my leukemia under control so I can be in good health for it. The thought of having my Dad walk me down the aisle so I can marry Raymond and become Mrs Sunkel is giving me plenty of determination to pull through these next few months.

I best get better then so I can get out there and try some dresses on! J


(I will try and keep my blog updated during my time in hospital.  If it doesn’t make too much sense please excuse me – I’m on some painkillers which is making me pretty drowsy and the chemo isn’t going to help either.  I may be asking Raymond to take over again.)



The subcutaneous injections that I was having that weren't showing to be effective.  Spontaneous bruising on my legs as a result of low platelets due to my illness.