Friday, January 28, 2011

The Body Does Weird Things Sometimes

It's now over a week since Jake was removed and things have gone really well on the healing front.  

The wound is healing really well, but at the moment I still have two belly buttons - the hole where Jake was is still quite noticeably indented.  It is slowly flattening out and I don't honestly know if it will eventually become "flush" again.  To some extent, I'd like it to stay noticeable so I have a visual "memory" of what I've been through.  A case of wait and see.  

The weird thing though is that since Jake came out, my sleeping patterns have changed.  Although the only change to diet/drinking habits/routine was Jake coming out, I'm now not getting up as often during the night.  Don't understand it, but happy for the extra sleep.

Given everything my body has been through (often without any input/control from me) over the last nine months, I shouldn't really be surprised at this latest little surprise, but I had already gotten myself in a good space before Jake came out and didn't think there was anything that would happen as a result - bar the need to care for the wound obviously.

Moral of the story - never, ever underestimate the wonder that is our body.

The range of food I can eat seems to continue to widen as I find more foods that I can now tolerate.  This week, for instance, I've had a sandwich for lunch on two occasions and apart from the crusts, the bread doesn't seem to be presenting the obstacles it has in the past.

There are still some limitations, but they seem to be lessening over time, so that is another step forward.

Wednesday, January 19, 2011

Jake And I Part Company

Today Jake and I parted company.  It has been many months now (13th of May we were joined together) that I've had the stomach peg and it is really good to have it removed.  It is in effect the last medical step in the return to normality.  From here on in, it is up to me.

Jake was the last of the pre-treatment procedures and it seems somewhat appropriate that he is also the last to be removed.  He has been a "faithful servant" and for my part, the endoscopy nurse praised me for how well I've looked after him and the site.  

I had always believed that Jake was held in place by a balloon inside my stomach.  It turns out they have only been using such devices for the last couple of months and my version was somewhat different. Not to put too finer point on it, the removal was not going to be without some discomfort.  

In reality, Jake was held in place by a disc and the only way to remove it was to pull it through the hole in my stomach.  So, we have a disc the size of a 50c piece coming out through a hole the size of a straw - end result is discomfort.  That visual image not enough for you? - OK, a picture is worth a thousand words and all that, so here you go.

The actual process is really quick.  You are told to breathe in, then breathe out and hold your breath.  It is at this stage the nurse wraps her fingers around the tube and yanks the puppy out.

No stitches to seal things up - it should heal naturally within 24 hours.

No special precautions, apart from keep the area clean and dry and expect some oozing.
No restrictions on eating (refer potential oozing).

Within 10 minutes I was on my way.  Bonus was because it took so little time, I didn't exceed the 30 minutes free parking time at the hospital.  $3 saved.

I must admit it feels strange not to have a tube hanging out of me any more.  While I've waited for this day eagerly, readjusting back to a "normal" body is taking some time.  I'm conscious of the pad covering the wound and compensating my movements to ensure I don't do anything to dislodge it.  On the plus side, no conspicuous peg related bulges in my shirt any more.

Jake now resides at home and can share "war stories" with Hugo and the jar containing my wisdom teeth.  Somewhat of a morbid collection, but a great starter kit for Halloween going forward.

It is probably also an appropriate time to reflect on the last 8 months or so.  As you can see from the three "From The Other Side" postings, this journey has had some wide ranging impacts.  I must admit that from my side, I was concentrating on getting myself through it all, and while I understood it was having an impact on my support team, I didn't fully appreciate how much so.  A very sincere thanks to you all for giving so much of yourselves to help me as you did.

So with Jake now cut loose, has normality returned?  As I've said before, there is a new normal, but with each day my eating returns more towards normal, I'm now back at work full-time and slowly regaining strength.  I've mowed my own lawns and washed my new car twice (very poor given it is 3 1/2 months old, thank goodness for the paint protection system).  I've even, shock horrors, done some good old-fashioned house cleaning.  I'm even giving Bax a fair bit of overdue lip and I'm told I'm smiling again, more of my old cheeky self.

I certainly feel like I'm back to normal, but am still being cautious not to overdo things, so there is still a gently, gently approach towards some things.

Today is definitely closure on the medical intervention front.  You could even say it is the end of round two (round one being the treatment), so we've only got round three to go - the medical all clear.  That may still be a year or two away, but with my birthday (and anniversary of the confirmed diagnosis) now less than four months away, I'm really looking forward to life again and just so thankful to everybody that has made that outlook possible.

How about a post-Jake shot to finish.....

Tuesday, January 18, 2011

From The Other Side - Part 3

To complete the picture, here are Faye's thoughts from across the ditch.

So Russell, your worst fears were realised and you were diagnosed with Cancer.  Sometimes too much information is too much information because then we Googled all we could about your cancer.  It wasn't really a good idea.It gave us facts but gave us no idea of the emotional toll it was going to place on your nearest and dearest.
I contacted a friend of mine who can 'see' things and she told me that other than a very rough road, you were going to be fine and would survive.  PMA?  Maybe, but she's been known to be right on many, many other occasions.
We skyped a lot to begin with and it was good to chat and see your facial expressions.  I could see you were scared and who wouldn't be with what you had yet to face.
Apparently you had decided that my role, being here in Australia, was to be your sounding board.  After all, it wasn't life threatening and you didn't want me wasting money on airfares to come over.  The best place, you decided, was for me to stay put.  Perhaps it was just as well,  I think once I'd arrived there I would never have wanted to leave until the end. 

I felt relief initially that I wasn't needed and was all prepared for my 'important' role.  But it didn't work that way did it?  I heard of your preparations so that you would be able to look after yourself while you were being treated.  You seemed to have everything under control.  I was really impressed  with the way you had organised yourself and seemed to be ready for this.  You had apparently asked the right questions and knew what you were facing...or so it seemed.  It seems that with your PMA you forgot to ask about worse case scenario with your treatment.
We all know about you having to face your fears with 'Hugo'.  Now I was starting to get nervous.
Then the shit hit the fan and it all turned to custard...sorry folks but that's the only way to put it.  Your body apparently didn't appreciate being filled with poison.
I was really, really lucky.  Scott, one of my co-workers, had had cancer, he hadn't been expected to live.  He had been through all this and knew what I was talking about.  He was kind enough to explain everything, how it was affecting you etc etc and how you'd be feeling.  It wasn't until the end of treatments that I found out that I knew more about your chemo reactions than either you or Ruth S did.  I also, in my travels as an Avon lady, discovered a lady who lived locally who was Scott's Aunt and she was able to give me some of her emotional background.  However, this was my Brother that was now suffering and it didn't stop the concerns.  However, it's made me realise how important it is to talk to someone who's been there and come out the other side.
How can I explain the utter frustration and the debilitating, gut wrenching feelings when I knew you were suffering and I wasn't there.  Thank god Greg was there for support.  I couldn't concentrate on anything for weeks.  I just sat here at the computer waiting for information....ok the facts were placed on the blog but that didn't apprise anyone of the personal emotional toll it was placing on everyone concerned, especially yourself.  Despite all your careful advance preparations, you were totally helpless and dependent on others.
Text messages from Ruth S apprising me of situations and emergency trips to A & E.  Then waiting for the results.  I needed to KNOW!!  Thank goodness I was able to phone Ruth S whenever she was available.  The small amount of information I was getting from you made me wonder if you were perhaps trying to protect me and as I thought on that, I was quite angry then gathered that perhaps you weren't ready to share the facts......And then on talking to Ruth S, finding sometimes Ruth S did not know what you were telling me, that the right hand didn't seem to know what the left hand was doing...or why,  although to be perfectly honest I am well aware now, that there were times when you really weren't able to.  I'm also aware that I was made the meat in the sandwich, something that you and I did discuss in the middle of it.  Things that you didn't want shared.  So I guess it worked both ways.
Plus remembering what a private person you are, gathered you really didn't want to share the emotional upheaval you were going through.  I so wanted to make the trip over but you had said quite emphatically NO NEED!!  You said that you would have thought you were at death's door and no one had bothered to tell you.
I am so proud of my sister, Ruth S, who was so strong for you and I'll always be grateful for the support your employers gave you.  My eternal thanks to all of you. what did I learn that would benefit others?  If you are able to, visit as often as you require.  Information you receive doesn't give you the whole picture.  It's reminded me to read between the lines.  Being able to give them hugs and hold their hand, not only makes them feel better and less alone, but it will make you feel better too.  There's not much else you can do, but offer your support to those at the battle face and not just for the sufferer but for those in the support crew..  Be assured Russell, that if there is ever a next time I'll take as many trips as I like and can afford. 
Oh...and did I mention how much I love you?  I was so very very glad when I finally made the trip and was able to hug you.  But it will never take away the guilt I felt at letting others take the load.  And despite not being there, will never forget the emotions I went through at each turn....the horror of what you were facing...or the little victories....Roll on Wednesday.

Sunday, January 16, 2011

From The Other Side - Part 2

Here is Ruth's side of things.  Love you Sis, and thanks, from the bottom of my heart, for everything you did for me.

2010 started with a bright outlook, I was getting to know my brother and spend time with him and old Family friend Chris and wife Pat.
There was Brent & Dawn's wedding, looking at houses, power boat racing, Saturday arvo at the Tavern, looking at cars, packing up your house and the move back to Totara Park.
I was seeing a new side of my Bro - the big decisions he had to make, some fun and some not so happy. But thru it all we got close,r seeing a new side to each other as we hadn't till then.

Then came the big bomb shell.  “Cancer”.  Keeping in mind that it is not often you hear the success stories, was I going to lose my Bro when I had just found him so to speak. The news sat me on my rear end, absolutely gob smacked me. Even though the specialists were positive about the success of proposed treatment it was emotionally destroying, but you pulled me into line, PMA, okay then give me a minute to pull myself together.  Hat, coat, bata bullets, phone, okay all ready, now let’s do battle.

Little did we/I know then what I would need to be able to support you in this battle.

Then came the onslaught of medical appointments and their resulting information. Whoops what do I do with all this info at times it was hard to process what was going to  happen next, but luckily you had a handle on this.  I can see now that I was quite numb with all that I was hearing. I can only imagine how you felt.

We had our first sleep over when you had your teeth removed, and I think it was at this time that we went and got that infernal door bell buzzer. While this was an essential piece of equipment by the end I was ready to smash it to pieces (have you still got it and can I smash it that is LOL) I should say here that I am not a violent person, very passive really. But to sleep without it going off was like when a baby first sleeps thru the night and you wake up and rush in to check if they are okay.

Then came “Jake” such a blessing, but on insertion I am sure you wondered if the pain would be quite worth it. This was my first insight into nursing you. You were in the ward and very uncomfortable and very unsteady on your feet. Oh how assertive can I be. We need a zimmer to get you to the bathroom (you used one first ha ha) eventually they sorted out the amount of drugs you would need and you were much more comfortable.  Thank goodness they were keeping you in for the night. I quickly learnt how to feed you thru Jake and give the required medication always had to be a bubble in the syringe no matter what I did or if it was a new syringe.

Life then returned to some sort of order, the calm before the storm really.

“Hugo” wow am I proud of you. As I am also very claustrophobic I could totally understand your panic attacks. I am glad I did not have to watch you during many of the radio therapy treatments. Doctors weren't worried about this - medicate for everything so they could get you thru treatment and we would pick up the pieces later.

Treatment finally began, yeah this was good. Didn't know you had such an aversion to needles - feeling does return to your hand if it has been squeezed as tightly as you squeeze at the sight even of a needle.

Our first trip to A&E was an education in itself.  The time they take just to decide on what to give you and hey this is a F1 weekend I want to be home by midnight. We arrived about 4pm so shouldn't be a problem. The prescribed drug was morphine and the Wgtn Emergency Pharmacy closed at 11pm so I had to do the runner to get the prescription filled and as we had arrived in your car this would be my first drive of the Murph. Wow might've just been down the road, okay pull up those socks and just do it. Got back to A&E and they had given you a shot of morphine so I then had to drive us home (keeping in mind I wanted to be home by 12.  Glad I had had a practise run without you in the car – Think you were as nervous as me. Yeah we got home just before 12, well done.
 Our trips to A&E were always difficult as you were so sick and there was nothing I could do to make you comfortable, seeing you like this was heart wrenching. How does one explain how sick you were. Do you speak of the stooping posture or the shuffle when you walked, the unsteadiness on your feet, the look of despair in your eyes after you had been vomiting, your weight loss.

From here my life was well and truly put on hold so much was happening. I don't like thinking about this time as it really took a lot out of me emotionally and physically which I think I have just about recovered from.

What does a good night’s sleep mean? Well for me it was that infernal buzzer not going off or hearing your frequent trips to the bathroom, hearing you trying to move the phlegm and wondering if you were going to buzz or not. It was also a disturbed sleep for you but at least you would go straight back to sleep.  Me it took a bit longer to fall into that deep sleep and then to be woken by that buzzer – Up and at ‘em, atom atom ant. During the worst period this meant waking every 4 hours to give top ups etc. Working during the day ending up at A&E that night and staying till they put you in a ward 5pm the next day. At least you had a bed for this time those chairs they have for the support person are just not conducive for sleeping in.

When does one eat when the smell upsets you so much? Arriving at your place after work and staying the night, what/when and how does one get food. If I was at work I could eat there yeah, nah.
A&E trips all night and the next day spending most of this time in A&E and no one else to sit with you so I could go and get some food and eat it – hello coffee and thanks Kylie & David and Lance for filling this gap.

Ringing the District Nurses was okay.  They were always very helpful and understanding also encouraging me that I was doing all possible to keep you comfortable. Then came the time I had to call 111.  This was most upsetting and I had trouble keeping in control, but the Ambulance staff were very good.

Our Sister, Faye. At times I envied her the distance from all that was happening. We were in the thick of it. Yes she had Scott to explain what was happening but did he pass on the emotional side of all that this entailed? I am not sure and I don' think we were much help in this either to her. I know I was just giving her the facts at times and not sharing how you were or the emotional side of what was happening, the time involved in A&E trips, the sleepless nights trying to keep you out of A&E or when you had had enough, why I wasn't at work when she thought I should be and even why I was so tired and didn't want to talk. It was good to see her in the flesh and talk thru with her the many happenings, this seemed to give me some sort of closure. Faye also suffered by not being here and I know she is aware of that but did what you asked of her – stay strong and support us with calls and listening.  I must say she was a good listener. I understand her questions, though at times frustrating, you have to ask if you don't quite get it or understand why someone is so upset.

Lance, the quite unassuming quietly in the back ground person – what ever would I have done without him keeping my own home running smoothly, cooking me food, always ready with a cuppa when I arrived home. He was my rock thru all of this and there is no way I can ever repay him for all that he did. Like me, he did it because that is the sort of person he is. Also knowing that he was with you during the day helped me to be comfortable that someone who cared was with you.

Brent & Dawn, produced the most perfect gift right in the middle of all your treatment.  A wee granddaughter.  My car had a flat tyre and Lance's car kept beeping at me but you encouraged me to go down that night of her birth even though you were unsteady on your feet and feeling very unwell. You took some amazing photos of us all and these I will treasure always. I know the sacrifice you made to come with me.

Meltdowns (tears) these were a plenty and there are many people to thank for mopping up after me. Chris & Pat for one always available for visits or calls.

The Cancer Society – what a lot of support systems they have in place. Their support is for the sufferer not the support crew. So there was I,  thinking no support here for me. There was one lady who did try to help me but there was never time to catch up with her in the flesh so to speak. Often she would leave a message on my phone just to see if I was okay.

A New Year has begun – The all clear has been given for this round – such a big yahoo from me. This round has been won, may there not be another round.  Now is the time I can stand tall again and rebuild myself.

To take care of someone else you must first take care of yourself. At times I did not/could not and was unsure until writing this what I could have done to help me thru this.
 Heather was a godsend she enabled me to get home more often to feed myself and gave me more time out to recover my energy level so I was better able to support you.

Of this I know - I was true to myself over this time I did what I could.  Yes I suffered from burn out but who wouldn't.   The cost was emotional and physical, one I gladly paid to help you thru the most trying of all times.

This round is over – well will be on Wednesday, so lets get back to having some fun.

Love you Bro and it is good to see you now looking so well and thanks for my new toys.

Monday, January 10, 2011

From The Other Side - Part 1

Up until now, the blog has been my take on everything, but it occurred to me that those who have endured it from the supporter side should be given their opportunity to let you know what they went through and how they were feeling.  All too often, everything is geared towards the cancer sufferer, but those providing the support to me have had their own battles/demons to deal with and so I've asked both of my primary caregivers, Ruth S and Moira, to prepare a posting to share with you.

Moira has done hers (thanks Moiz, know it can't have been easy), so here it is.

Russell asked me if I would like to add my own thoughts to his blog and I didn’t hesitate in saying yes.  Since his diagnosis, I have had so many thoughts going around in my head and so many, many emotions.  So, this is a little insight into Russell’s journey from my perspective.

When Russell rang me on that Friday night of 30 April, I went into immediate shock.  We have been in each others’ lives for 25 years and, in all that time, Russell has very rarely had more than a cold and he has certainly never spent time in hospital other than a couple of day-patient operations on his knees.  But this was a whole new ball game.  I took some time by myself to take in what Russell had told me and resolved to be strong for him and help him in his fight but all my good intentions went out of the window when I next saw him and I went to pieces.  I still beat myself up about that – here he was facing a fight for his life and all I could do was cry.  Not surprisingly, he opted not to allow me to attend his first treatment.  As always, he was quite right – he had to be strong and he couldn’t do that if he was worrying about me.  That is one of the things that is so special about him, he does worry about me despite what I have put him through.  He has been my rock for so long and now it was my turn to be the rock.  So I made a vow that I wouldn’t allow myself to fall apart when I was with Russell, I would leave that until I was alone or had a shoulder to cry on – my sister and a couple of friends experienced wet shoulders occasionally but I felt this was something I had to come to terms with myself and, as a result, I have a new-found inner strength. 

The first time I went with Russell to the hospital for his treatment was very daunting but I reminded myself that I had the easy part.  I often hear people say that they wished they could swap places with their loved ones – now I know what they mean.  Every time I watched Russell climb on that table for radiation I wanted to take his place and the first time I accompanied him for chemotherapy I felt it when he flinched as the needle went into his hand but he faced every challenge like the positive person he is and never gave up the fight.

Now, nine months on, and Russell has come through the other side.  It has been a difficult time for me but I constantly remind myself that, no matter how bad things are for me, it is worse for him.  I am so very proud of the way he has got through this but I can never thank him enough for the way he continued to look out for me throughout his treatment and continues to do so now.  I feel so very blessed to have him in my life and I will never, as long as there is a breath in my body, stop appreciating him and how very special he is.

When they say you never know what you have got until it is gone, they are so right.  This experience has opened my eyes and made me appreciate what I have.

Finally, to Russell.  Thank you from the bottom of my heart for allowing me come along for the ride and to be there for you when you needed me.  Like I told you when you were first diagnosed, life isn’t fair – people like you don’t deserve to have this happen.  I wish only the best for you for the rest of your long life and I hope I will always be a part of your world.

Back To The Coal Face - Normality Step 2

Today I returned to work full-time and it felt great.  I went in for a few hours between Christmas and New Year and for two almost full days last week.

But today was the first where I got up to my alarm clock at my "normal" time and went through a normal work routine, with the addition of having breakfast (never used to do that).  Then into the rush hour traffic (albeit reduced as people are still on holiday) and into the office for a normal start time.

Despite having been working from home for some months now, it was still quite hard getting back into the routine of being in the office and doing things.  The personal interaction was great to have and I'm sure by the end of the week, to some extent, my months away will be but a distant memory.

Friday, January 7, 2011

Another Step Towards Normality

Had my appointment with the dietician yesterday and passed the magic weight threshold.  I was leaving nothing to chance, having resorted to weighing my clothes to make sure I wore the heaviest options.  For example, my choice of t-shirt was 150gm heavier than one of the alternatives and my shoe choice was 200gm heavier than the normal shoes I would have worn.

End result is Paul is happy to now refer me back to endoscopy to get Jake taken out.  Just have to wait for them to contact me for an appointment - hopefully sooner than later.

I also scored brownie points for the variety of foods I'm now managing to include in my diet - Paul was impressed I can manage peanuts now.

The discussion also covered off what happens if my weight drops between now and the next appointment (which by the way will now be the gang of seven clinic, no need for separate sessions with Paul any more) and so long as it is managed weight loss, he is OK with it.  What this means is providing I'm still eating, building endurance, muscle, etc, any weight loss isn't going to count against me.  They will however be concerned, as will I, if there is uncontrolled loss e.g. another gastric bug.

So, all in all, a pretty good start to 2011.