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.

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.

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.

Enjoy Life

As we sat in the Haematology clinic butterflies flitted about in my stomach.  I’m not sure why as I felt like I had a pretty good idea of what my specialist was going to say and I’m well used to hearing such news.  Nevertheless, there we sat nervously waiting.  As usual I had my support crew with me, which included Mum, Dad and Raymond.

As expected we were given the news that transplant is no longer an option.  Due to the evidence that the leukemia is on the move again the UK have lost their confidence in a second stem cell transplant.  They recommend I go through another round of the high intensity chemotherapy I recently had followed up by some DLI (donor lymphocyte infusion) therapy in Auckland.  It came as no surprise that Auckland isn’t willing to treat me.  This is due to the belief that DLI would be ineffective after having received one dose in 2012 with no positive result.

After discussing matters with my specialist we decided the next best option is to start some low dose chemotherapy administered subcutaneously (under the skin).  One course consists of twice daily injections (given by myself or a support person) over a period of ten days followed by a two week break.  After a course or two we should have a fair idea of whether this is helping to slow down the leukemia.  The aim of this treatment is to prolong my life.  At this stage there are no more medical options for me in terms of a cure.  Life expectancy was not discussed at today’s appointment.  It is not something I wish to know.  I do not want to have any statistics or estimates of time messing with my head. 

Delivering us this news was not easy for my specialist.  It was quite obvious he found it difficult.  In fact he was visibly close to tears and this he admitted.  I really felt for him as he has tried so hard to pursue different treatment options for me.  I hugged him and thanked him for his efforts and care.

Once I was outdoors away from the eyes of specialists and nurses I couldn’t fight back the tears any longer.  Even though I was prepared for the news we were going to receive, hearing it was still not easy. 

We came away talking about things we can do to enjoy the summer and about how even though options are running out that we still refuse to give up hope.  We are still counting on a miracle.

I feel satisfied that we have fought really hard for a second stem cell transplant and I feel ready to let go of it now.  With it being such a battle to find someone willing to give me one, with it needing to be done overseas, with it being booked and then cancelled twice now I am beginning to feel it is not the right direction to head in.  If it had fallen in place a little more easily I would have had greater confidence in it.

The focus now is to keep healthy and to enjoy time with friends and loved ones.  With the removal of my PICC line from my arm today after suffering infections from it, I am now free to head to the beach and enjoy a frolic in the waves.  

After our visit to the hospital we promptly followed it up with a visit to the bike store so I could buy myself a bicycle complete with basket and bell so me and Holly can noisily and joyfully pedal the riverside pavements.

There has even been talk of getting the juicing machine back out – yikes!  After having my previous rant of feeling pressure of “doing the right thing” I am re-visiting some of these dietary plans and looking to explore some additional alternative therapies to the ones I am already doing.

It is my 30^th birthday in four months time and I am feeling very determined to be alive and well for it and you never know, perhaps there is even room for a wedding....

Writing today's blog.

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.

Little Healer

It’s no secret to anyone that knows me or who is friends with me on Facebook how much I love my dog.  I’ve never owned a dog before Holly. We’ve always had cats.

The reason I got Holly was because I am completely and utterly terrified of dogs.  Not just a little bit scared, terrified.  Big ones, small ones, it doesn’t make a difference.  I will cross the road to avoid one even if it is on a leash.  I will refuse to get out of the car if I am at someone’s house who has a dog.  I will break out into a sweat and be totally on edge around one.

Getting my own dog was my solution to getting over my fear.  I know, I know, how could you ever be scared of a little dog like Holly?  Well, even when she was half the size she is now when we first saw her at the pet shop I was too scared to hold her.  Embarrassingly, the staff, my friends and Raymond had to help me build up the courage to hold her tiny little furry self in my arms.  Once that happened there was no going back!  She was mine!

The reason I am writing a post about my pooch is because I have found her to be the best thing ever during my time of illness.  She has provided me with the greatest distraction from myself and thoughts of my situation.  Caring for her and training her has given me something else to focus on.  There has also been many a day where Holly has helped cheer me up in and out of hospital.  She really is a little healer.

My family are also besotted with her.  Little Holly has given us all an incredible amount of love and happiness and there is definitely no shortage of love and attention for her in our household either!  Six grown adults turn to mush whenever she is around!  When any of us have had a crappy day and things become too much we can't help but perk up when Holly greets us at the door as though we are the best thing to have ever existed.  Again, quite the wee healer! 

My love for her helps me to keep going.  I want to get through treatment and beat this disease so I can continue to have my little bud by my side.

Oh, and she has definitely helped me with my fear of dogs! 

The day Holly came into our lives.  At the pet shop

Holly comes to visit me in hospital

Recovering at home with my little buddy

Here is a video of another little fella who loves his dog just as much.

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.