Monday, June 28, 2010

What A Full On Day

Well, that is treatment day one done and dusted, but am I knackered!

Day started with Ruth picking me up just after 7am and finished with me walking back through the door at 6:35pm.  What a hell of a long day!

How the day went:
  • Arrived at the cancer society car park just before 8am.
  • At the cancer day unit around 8:10
  • Off to see the Chemo nurses  around 8:15 (weight taken along the way)
  • Cannula inserted and 1st of the fluids started to be pushed through - saline with potassium - 1 litre odd administered over two hours
  • 2nd fluid then started around 10:30, again 1 litre over 2 hours, this time it is saline and magnesium.
  • 3rd fluid is the cisplatin itself - approx 200ml administered over 1 hour
  • 4th fluid is another litre of saline, this time with both potassium and magnesium. It is around 1:40 when this starts with normal 2 hour cycle.
  • Happy pill at 2:45
  • Off to radiotherapy unit @ 2:55
  • Meeting with Clare who explains a few more things and give me my appointment schedule
  • Into the treatment room somewhere around 3:30
  • Back up to the chemo unit for last of the saline to be run through, take my weight and go through the anti-nausea pill regime.
  • Cannula final removed around 4:35
  • Off to cancer society to sort out parking permit
  • Join rush hour traffic at about 4:50
  • Stop at Countdown for bicarb of soda for mouthwash mix @ 5:55
  • At Chemist to get scrips filled at 6:05.  Some issues with exactly what was needed and that delayed this all a tad. Resolved with help of the card I got from Wendie.
  • Local roast for dinner at 6:15
  • Home 6:35
Along the way there were other "gems" (in no particular order):
  •  As a result of all the fluids going through me - topped up with 2 x 750ml water taken orally - I ended up taking toilet breaks every 30 minutes or so.  This entailed unplugging my "dance partner" (the infusion pump), going to the loo (not an easy task getting both me and the pump into the toilets) and then coming back, plugging it back in, reading for a little while, then repeating the process again and again.  Gave up on reading my book around 11:30.  Ruth (sister, not nurse) asked why I hadn't given the pump a name and I said it was unlikely I 'd get the same pump each time, so the generic "dance partner" was enough.
  • David & Kylie arrived just after the cisplatin was loaded up. They stayed until I disappeared into the radiotherapy suite. (Thanks for the welcome distraction guys) 
  • The cisplatin bag had my name and details on it - duly checked by the nurses that I was who I was meant to be.  Because the cisplatin is sensitive to light, they put a black plastic sleeve over it - and this had my name on it as well.  Other patients just got a paper bag crudely put over theirs.
  • There was a steady stream of patients through the chemo suite all day.  As I was first in and almost last one out, I was either the only newbie, or only one receiving this particular treatment.  I certainly seemed to be the only one receiving all the fluids, most people were just getting one small bag of something and were gone in an hour or so.
  • Ruth, the clinical nurse came up and introduced herself - a real sweetie - and I'll be seeing her a couple of times a week.  She was also at the Hugo session and helped me get through it. Think we're going to get on really well.
  • When the nurses are handling the chemo bags, they wear aprons and rubber gloves to protect themselves - seems they handle so much every week, they need to take some extra precautions so they don't get dosed accidentally.
  • At the end of the day, my weight was up by 1 kg, all due to the fluids.  Apparently norm is 2 Kg, so everybody was really pleased/impressed with how my kidneys are functioning.  Hopefully over next day or so that will return to normal.
  • As the radio & chemo is my primary treatment (as opposed to surgical remedies with radio/chemo being post-op treatments), this means I won't be bumped from my treatment appointments - I effectively have priority.
  • I should start all the secondary care stuff (mouthwash, using aqueos cream, etc) now so it is all routine before the need really arrives.
  • Ruth (the nurse) took a look at Jake and has decided we should put a gauze pad around Jake to reduce the pressure from the flange onto my stomach.  She did this today and almost immediately it felt more comfortable.  I'm seeing her again tomorrow and she'll review what impact this is having.
  • Clare (part of the RT team) reiterated the treatment was going to be tough come around mid-cycle i.e. around 3-4 weeks.
  • During the Hugo session, they decided to cut out the eyes and Hugo looks even meaner as a result.  FYI, Hugo was tighter today because of all the fluids that had been run through me, so hopefully will be a little more comfortable tomorrow.
  • During the day I was given a full daily dose of the anti-nausea drugs, so hopefully I'll sleep OK tonight.
I'm not going to go into much more detail about today right now - I'm too knackered, but wanted to get the important stuff down.  Not sure how much the chill pill is responsible for, but either way it is exhausting just sitting in a chair doing nothing all day.  Next time I'll take my laptop I think and get some work done.

Hugo session is 12:50 tomorrow, so I'm hoping nothing untoward happens overnight and I can go to work as normal in the morning.  Nick is on taxi duties tomorrow.

I'm now going to do my medical cleaning routine and go to bed. Bottle of water will be by the bed and I'll be trying to get more fluids in me to ensure nothing has a chance to stuff my kidneys.

Good night all.

Sunday, June 27, 2010

And The Countdown Marches On

In around 10 hours, the treatments begin.

Over the last few days, the last pieces of the pre-treatment preparations have fallen into place at home.  The new stove is all wired in (and it's great to be able to control cooking via elements, etc that actually work); the HRV seems to be maintaining the house at a pretty comfortable temperature (14-16 degrees first thing in the morning) so the heat pump isn't working overtime; the new lounge suite has been here for a week (and has already proven great for falling asleep in on more than one occasion); I have the 2nd thermometer now; I've been drinking a couple of litres of water daily and I went shopping for a nice new plastic bucket today - although I hope I won't use it, if I do get nausea & vomiting, I'm ready.

I also finally found a more workable bag for my emergency stuff and have double checked my chill pills are in there ready for tomorrow.

Best of all - Jake and I have been friends all weekend.  No nasty surprises this weekend.

Bit annoyed Whitcoulls have been so slack with the kobo (e-reader).  They told me shipping would be on 18th (fine, means I'll still have by 28th), but when I rang again earlier in the week, they said was now not shipping until the week of the 28th.  I explained my situation and they confirmed I had been told the 18th was when it would ship, but they had underestimated the demand.  Really?  You reckon that when they say delivery will be 2-3 days and it has now taken over 4 weeks that they'd update those people with outstanding orders, but oh no, they just ignore them.  Nice lady said she'd talk to her supervisor and see if they could expedite my one given the circumstances, but as of a few minutes ago, still shows as "ready to ship".  Anyway, have packed a "proper" book to take tomorrow to help fill in the time.  iPhone is also fully charged, headphones are all sorted,  so I'm as prepared as I can be.

David & Kylie will be coming up to the hospital for a couple of hours around lunch time tomorrow, so that will give me other distractions as well.

I'll definitely be avoiding the McDonalds lunch fiasco that preceded my last meeting with Hugo, so will give lunch some thought once everything is under way.

So how am I really feeling?  To be honest, I'm feeling a tad nervous now.  Despite everyone's best efforts for this weekend to be as normal as possible (thanks especially Phil & Bax), I've had a number of calls during the day from people wishing me well for tomorrow and each time I've tried to sound really positive and upbeat, but the strange thing is with each call, I appreciate more the seriousness of what is about to happen and perversely, each good wish slightly erodes my confidence.  I'm not saying I'd prefer nobody to care (heaven forbid, it is these people who will be my strength in the coming weeks), but I had managed to cocoon myself and with the distractions over the last few days, I hadn't had to deal with the "reality".

Can't do that now and while writing these blog posts is normally quite therapeutic, on this occasion it is becoming quite the opposite.  Just like those message of goodwill, doing this is stripping away another layer and laying bear what tomorrow will bring.

With all this said, don't think I'm a jibbering cot case.  It is moments like these you need minties that I do feel a little alone.  Yes, it would be really great to have someone here to talk to and provide some human interaction and comfort, but that would probably also erode even more of my PMA because I'd be worrying about their feelings as well.  So, as you can probably tell, I'm somewhat confused right now.

I've waited for this to start for what I consider too long now and the indisputable truth is the trials and tribulations associated with the treatment I'm about to commence can no longer be ignored.  Perhaps surprisingly, I've still got a level of PMA that I would rate as being somewhere around 60-70%.  The end game is what this is all about and I'm going to win, so I say Bring It On.  With the skill, help and support of not only the medical teams, but also my extended family & friends, I'm going to knock this sucker over 1 day at a time and from tomorrow, there will be a new countdown, which will start with 48, because that is how many days until this will all be over.

Thursday, June 24, 2010

Age Old Problem Surfaces.

Sometimes you have to wonder if the medical types actually talk to each other.  Today seemed like a classic case of left hand not knowing what right hand is doing.

Wendie visited today and as well as her taking a look at Jake, we discussed Chemo and I've got a nice little patient protocol Q&A to read - only 6 pages (well it would be if Wendie had given me pages 5&6).

Anyway, here is what I meant by conflicting info:
"You need to clean Jake 3 times a day" - No, says Wendie, I don't.  Seems problem is the bottom of the flange will always put pressure on the skin at the bottom (a by-product of my manly physique), so extra cleaning isn't going to fix that.  Wendie is going to talk to the endoscopy nurses about some cream that could be applied to help keep the skin settled.

If this comes off, it will mean I don't have to try and find creative ways to make the flange stay "lifted".  Wendie has also given me some techniques/exercises to do to help the stomach get a break from the pressure.

Other medical gems:
I've had to shave a number of patches on my stomach now to give the sticky pads a number of alternative positions.  This is because my skin reacts to the adhesive.  Well, bugger me, Wendie says there is a simple solution to help with this - apply some aqueous cream and it will act like a moisturiser and help "heal" the skin.  Why has this not been suggested before by the district nurses?

I've also been having issues with the sticky pads not lasting as long as they used to.  First couple seemed to last a week, but most recently they only seem to last a couple of days.  Wendie asked if I was using the skin prep squares.  What skin prep wipes?  Seems there are two little wipes/pads that I should have been given.  One - remove - is for cleaning the residual adhesive off the site the pad has been on.  Second - skin prep - is to clean the new site and give the adhesive a good surface to stick to.  I now have supplies of both.  Had I been given these earlier, life would have been much better.

Seems I shouldn't use the same pad site consecutively either - need to give the skin a chance to recover.

If only Wendie had been seeing me each week!

I took the opportunity to ask Wendie about the dove body wash I'm meant to use once treatment starts.  There is now at least 3 different variants available, so can I use any one of them?  Seems the idea is to use something that doesn't have perfumes and will moisturise.  When the original recommendation for dove was made, they only made one type, so it wasn't an issue.  But wait, there is a simple solution.  Seems I can rub the aqueous cream on my face, etc before getting into the shower, then just wash it off.  No need for special body wash just for my head/neck after all.

I'd have needed the aqueous cream anyway to moisturise my face once the radiotherapy takes hold, so now it is a multi-use product.  Three uses out of the same 500gm tub - and it's only $7.

I certainly think that if the various district nurses had asked some questions along the way, I could have avoided a number of issues over the last couple of weeks.  Classic case of I don't know what I don't know and they didn't ask the right questions.

On to the chemo discussions.  Seems I'll get my prescription on Monday for the anti-nausea pills, but even though constipation is a known potential/probable side affect, I'll need to ask for some pills to counter that to be added to the scrip.  Duly noted.

Seems they'll run a litre of fluids through me before they run the cisplatin through and the need to keep pushing fluids through for the days after (and before as well it seems) was again stressed.  By my calculations, I'll be consuming at least 15 litres of water a week for the next 7 weeks - and alcohol needs to come off the menu for that period because it will impede the fluid levels.

I'll meet Ruth who is the clinical support nurse (or something like that) and will probably see her at least twice a week going forward.  She'll be my 1st port of call if I have any issues and/or questions.  Again, need to make sure I tell them about anything out of the norm - mouth ulcers, etc especially - so they can get them sorted asap.  Already subscribed to that, so won't be any different to way I'm doing things now.

What else? 

  • Have sorted out with Cancer society re parking on Monday.  Just leave a note in the car window and then see them after treatment for the permit.
  • Wendie said she will see me on Tuesday at the hospital as she has a meeting there around same time.  
  • She liked my emergency backpack and the folder I've got all the stuff in.
  • We agreed I'd get another thermometer so I always have one by my bed within easy reach.
  • I'll need blood tests before each chemo cycle, but these will be done at Aotea Pathology on the Saturday before treatment.
  • Don't rush trying to do the radiotherapy without the pills - it will happen when it is meant to and until then, take the pills.

I'm sure there was other stuff, but it obviously wasn't significant or else I would have remembered.

So, tomorrow is 3 days to go until it all begins (Monday is day 0 as I see it) and I must admit to not being overly worried about it all  - at least that's how I feel now.

Sunday, June 20, 2010

What Is It With Weekends

I'm  not sure if it's a sign of my general health, or just TC related stress, but I'm finding I'm really tired after a day at work.  Sure, I'm trying to do some catch-up, but honestly I get home and pretty much crash by 8:30 on work nights.

Which is why I "treasure" my weekends as a chance to recharge the system.  That is providing Jake is willing.  For the second weekend in a row, there have been blood issues that have thrown me.

Backing up a bit.  The strapping applied Thursday has withstood the test of water and I decided to remove it this morning as it was starting to lift anyway.  Only downside has been that the way it was strapped meant I couldn't stand fully upright - I was forced into a little bit of a stoop that got annoying after a while.  Anyway, with the strapping in place, some of the routine maintenance I'm supposed to do on Jake also became more challenging.  He is meant to have a full spin daily to ensure the body doesn't acknowledge the foreign substance and close around it.  This has been two half spins over the last few days as it would have been impossible to "free" him to achieve this.  Also, flushing was a bit of a mission because the clamp was well and truly taped as well.  

On the plus side, cleaning has been easier without the pressure at the bottom of the stoma and the niggling twinges went away as well.

So, back to the blood.  Saturday afternoon cleaning was no problem and there was nothing adverse.  The weepage even looked to be less than normal.  Bed time clean was a whole other matter.  Thanks to the rugby tests, I ended up going to bed quite late and when I exposed Jake to the light, there was a fair bit of blood sitting around the flange.  Last week's problem was nowhere the amount of last night.  As I went through the cleaning process, I remembered I'd knocked Jake in the early evening - one of those situations where temporary amnesia set in and I forgot he was there (damn that strapping must have been good).  Anyway, decided not to panic and would see how things looked this morning.

Admit to getting up, having breakfast, watching some world cup - doing virtually anything rather than check Jake out.  With no excuses left, the time came and thankfully things seem to have settled down again.  While there was a small amount of blood intermingled with the normal weepage, it certainly wasn't enough to worry about.  Will take another look at afternoon clean, but hopefully the knock was to blame.

I'll not lie, I'm getting really frustrated about the limitations I'm enduring because of TC (not Jake's fault, he is just along for the ride too).  Know it's only for another eight weeks, but this feeling of helplessness isn't sitting well with me.

And what about the support for Jake now the strapping is off?  Glad you asked.  I now have yet another area of my stomach shaved to try and replicate the angles achieved by the strapping.  The pad is in place, but not currently in use.  You see, having removed the strapping, it loosened the pad and 1/2 of my shower was conducted with me holding Jake because the damn pad pulled right off.  Timing was terrible as usual.  When I got out of the shower, I ended up holding Jake straight up and it occurred to me that maybe putting a pad straight up instead of to the side might actually achieve what was needed.

End result, I have 2 pads to choose from now and will assess preferred option tomorrow morning.

Before I forget, watched the "Looking After Yourself During Chemotherapy" DVD with Ruth on Friday night - all 25 minutes of it - and quickly discovered it was an Australian production - gotta love the Aussie twang.  Only bit that really shocked me was how young some of the people were who had been through chemo - and the length of some of the treatments (5 months in one case and seemed to be very regular).  Seems I might be getting off pretty lightly with only 3 treatments (cycles as they are called) over the 7 weeks.

Apart from that, there wasn't really anything in the film that hadn't already been discussed with me at one stage or another.  Really just wanted to see it before Wendie comes on Thursday in case it raised any questions that I wanted answers for.  Even read the cancer society booklets on chemo, radiation treatment and cancers of the mouth,nose and throat. Again, no real surprises and a fair bit of repetition.

Seems the common thread is tell the medical staff of any issues and let them adjust medication as required to sort it out.  Already a paid-up member of that approach.

The countdown is really starting to commence now - this time next week my first treatment will be less than 24 hours away.  How I handle that "pressure" will no doubt be affected by how much I can distract myself with work this week and the whanau on the weekend.  Have to keep busy this week as I have a feeling I'll work myself into a state otherwise.

Friday, June 18, 2010

Strapping That Would Win an Engineering Prize

Visit with district nurse went well - no damage to Jake fortunately (sigh of relief).  My "emergency medical" bag now has some spare pads in it as well.

There is still some ongoing concern about the way the tube sits when fastened to the pad as it is continually putting pressure on the bottom of the stoma / flange.  This was the same issue when the pad was on the left hand side of my stomach, so has been under observation for a few weeks now.

So, necessity is the mother of invention and armed with some plastic skin, strapping tape and a sense of humour, I'm now sporting an arrangement that so far has successfully kept the stoma / flange level and made cleaning last night a lot easier as well.

There is currently no pain either, so seems like a win-win result.  Only real downside is the appearance, but that only really affects me.  There is some limitation in movement, but one adjusts quickly as one must.

Of course the challenge will be what to do when the tape eventually fails - I'm picking it won't last much beyond one more daily shower.  Most likely, there will be more chest hair removal to allow a different positioning of the pad and I'm thinking some kiwi ingenuity with a 1/2 width pad as well might just deliver the result required.

Sounds like a weekend job to me.

Thursday, June 17, 2010

Jake Doesn't Like It Rough

Small scare/issue yesterday with Jake that served to remind me I can no longer do things the way I used to.

As a result of helping with some office shifts yesterday, the pad that holds Jake to my stomach became a casualty and the tube was effectively free floating.  This of course placed a strain on the stoma/flange and as I didn't notice for a few minutes, ended up with a fair degree of discomfort.

I managed to jury-rig a temporary "sling" to support it until I got home and as I was applying the new pad, the discharge, etc around the stoma was worse than normal.  I gave it a clean and believe me it was great to have the tube supported properly again.

Still took a couple of hours for the discomfort to settle down.

The pre-bed clean also showed an increased weepage, but not much I could do other than clean it again.

This morning, things seem to have settled down with normal weepage levels to deal with.  I've got my district nurses clinic appointment this morning, so all in all quite timely.

Lesson learnt: I've got to be more careful and can't go doing anything that might aggravate Jake.  Unfortunately, it is another example of how I'm having to tone things down to accommodate TC and I hate to have to do that on any level.  Needs must however, and I'll have the last laugh in a couple of months.

Monday, June 14, 2010

What Happened To Getting A Normal Week?

Well, it's almost a week since the last post and despite my best hopes, things haven't gone as well as anticipated.

Firstly, the head cold decided it wasn't finished with me and today I'm almost over it (touch wood).  A few morning and night coughs, but by in large, all done and dusted.

It stuffed up my plans a tad, but far better to have it now than in a week or two's time.  To this end, I've discussed with my boss about working from home Wed 23rd - Fri 25th, just to ensure I don't come into contact with any bugs.

Next, had my district nurse clinic appointment for them to check on Jake and they were pleased.  Jake however decided to rebel as he is want to do.  When I gave him his pre-bedtime clean on Saturday night, everything was just fine.  Come Sunday morning there was some blood around the stoma.  After contemplating whether to check it out with someone, I rang the district nurse after hours and while she thought it was OK and knew what it was, we agreed to meet at the clinic at 12:15 just to be sure.

After a quick look, she was happy her diagnosis was correct.  Apparently it is a granulation tissue issue - basically the two layers of skin aren't playing nicely.  A quick application of some silver nitrate to seal it off and I'm free to go.  At the same time, the effect the pad that holds Jake's tube to my stomach was having on my skin caused the nurse some concern.  She also saw the beginnings of a pressure type sore where the flange is consistently sitting.  It was agreed I'd go home, shave the right side of my stomach and move the pad, etc to that side to give my left side time to recover.  One advantage is that as I sleep on my left side, I no longer have to worry about catching it during the night.  It does however now slightly get in the way of seatbelts.

All that said, I am feeling a bit of discomfort from Jake where the silver nitrate was applied.  Hopefully that will settle down over next couple of days.

While down in the Hutt, I went shopping for a new stove for the house.  Seems the current one isn't an economic repair given the number of faulty elements, etc.  Yet more expense I wasn't really planning on, but part of the "make  it all easy for me while I'm sick" exercise.  Just need the sparky to come and wire it in now.  

On the positive side, Wendie rang and is coming to see me on Thursday the 24th to discuss what to expect from the chemo in more detail.  She was amazed the district nurses were insisting on me using sterile gauze for cleaning Jake - especially as it isn't a sterile area.  She is going to sort that out with them.

Also on the positive side, Wellington Hospital rang on Friday and confirmed my appointment with the chemo nurse and Catherine Barrow for 8:30 am on Monday the 28th. So that it the final piece in the puzzle for actually starting treatment.  

I must admit I'd really like to have the opportunity to have another session with Hugo before the treatment proper starts.  With a gap of nearly 3 weeks, I do have some concerns that I'll have to overcome all that trepidation again, but at least this time I know the pills do indeed work.  Given the pressure they're under, not even going to push the issue as I'd hate to think someone who genuinely needed that spot has missed out just so I can get more comfortable with Hugo.

The weekend was actually quite productive.  Sharon and Phil were around on Saturday and almost have the gardens, etc under control.  Sean came around Sunday morning and we got all the stuff out of storage and into the garden shed - just need to sort it all out now.  The battery conditioner is doing its job - the Vette started first time after sitting for a week  , but need to try and stem the water that is being driven under the driver's t-top when it rains.  It isn't nice getting water dripping all over your legs.  

And Sunday finished off really well with a lengthy skype session with my son Tim who is in London. Great to actually see him and talk to him again.  After finished with him, repeated the exercise with big sister Faye in Brisbane, so I'm happy the off shore whanau is all up to date.

So, this week is district nurses on Thursday and not prepared to be tempting fate any more, at the moment there are no other medical bits planned.  Seems no matter how hard I try, there just isn't such a thing as a normal week to be enjoyed at the moment.  Today wasn't bad, so maybe, just maybe, the tide is turning.

Tuesday, June 8, 2010

Hugo Tamed

Well, come Monday I was starting to feel like my head cold was under control.
Friday and Saturday were shockers, but come Sunday things were indeed on the improve.  The lousy weather prevented doing much on the long weekend, but at least I'd stopped coughing - almost.

Today was the day for the scans to mark up the mask for my radiotherapy treatment.  First good bit of news was that they decided not to do the contrast scan.  Seems this is a new innovation to them, so they were more than happy not to push there luck.  Appointment was 1:50pm and I dutifully took my mellow pill at 1:30.  By this time I'd picked Ruth up and we were on our way to the hospital.

No mucking around - Liz came and took us through and Ruth got her first look at my nemesis.  During the course of today, the mask got named as well - Hugo.

So without further adieu, meet Hugo.....

We got down to business and came awfully close to actually getting Hugo clamped down and me in a happy space - almost.  The tongue depressor thing was becoming somewhat of a potential obstacle, so after consultation with Mr Wilson, two decisions were taken.  Firstly, we're not going to persevere with the tongue depressor - yippee!  Secondly, they decided I should take a 2nd chill pill as they were a low dose.

Dressed again, back in the waiting room for the 2nd pill to kick in and I must admit to starting to feel really quite mellow.  Back into the room, a few last coughs, some interim placement of Hugo and, ladies and gentleman, we had lift-off.

(Note the blue colour under my head - that is the custom moulded pad that supports the back of my head and shoulders)

 Scans were to take about 10 minutes, but didn't seem to be that long.  It only seemed like a couple of minutes before I was dressed and in a room talking to Liz about things.  Seems I haven't signed my informed consent yet (I jokingly asked if that meant I could sue them now?) and I needed to do that with Mr Wilson, who wasn't currently available.  Also need him to do the prescription for next round of chill pills (note new scrip is for full strength, so only need 1 pill).

We agreed I'd toddle off to the Cancer Society and then come back to see if Mr Wilson was available.  The visit to the cancer society was to enquire about getting a parking permit that will allow me to park in their park while I'm receiving my daily treatments.  As expected, they were lovely.  Now understand the process and was also given a tour of their premises to see what else they can offer.

Back at the hospital and Mr W is still not available, but I've got my prescription, so that was important.

At this stage, I'd have to say today was a good day.  I've proved I can cope with Hugo, I understand the need to have someone with me in case the chill pills impair my ability to drive, but most importantly - the final pre-treatment exercise is now complete (although Liz and the team still need to map my treatment regime, etc).  So all we need is a treatment start date, which is..........Monday 28th June.

That gives me three uninterrupted weeks to get as much as possible sorted at work, as well as clean up the last couple of tasks around the house.  This time is going to be great.

I also now know when the 7 weeks of treatment will be over - Friday 13th August - great date.  This also means that the end of July is when I should start to feel the cumulative effects of treatment.

By the way, the chill pills are meant to take the edge off for up to four hours.  Allow me to assure you that as soon as I took a step out of the hospital into the "fresh" Wellington weather, I was stone cold (really bloody cold actually) back to normal.

All in all, a great day that saw lots achieved.

Thursday, June 3, 2010

You Have To Be Joking

Having got my head in the right space for the mask/scans (well, as much as I can anyway), you can understand that I'm keen to just get on with it now.

Liz has confirmed my appointment for Friday for the scans and as I'm to see the nurse first, says not to take the pills beforehand.  So everything is aligning right? Wrong.

I've got a god-damn head cold now.  Runny nose and sore raspy throat are really going to help my ability to breathe in a confined space aren't they.

Saw Tatiana yesterday and while she wanted to prescribe a steroid based solution, she has had to err on the side of caution as we don't want the steroids to linger and potentially upset the chemo.  So, I've now got some Otravine nasal spray to try and kick this.

Talked to Ruth last night and she has given me some natural cold and flu drops, so giving those a go as well.

Don't really want to have to reschedule, but if I'm not feeling considerably better this afternoon, I see no point in wasting the hospitals time as it just won't work.

On the positive side, Tatiana is not at all worried about the Diabetes at the moment.  We'll monitor with blood tests after each two weeks of treatment to see what is happening.

Bloody cold, timing couldn't be much worse.  Bugger damn.

Tuesday, June 1, 2010

Bravado Under Lock & Key Until Further Notice

OK, reality time, this mask thing isn't going to be much fun.

Today was a two part visit to the hospital.  First part - make the mask.  Second part - take the necessary scans to mark up on the mask where they need to point the nukes.

First part was freaky.  You lie on a table (nothing resembling padding, so couldn't ever call it a bed) and they make you lie on this pad type thing that encases the area of your head and upper shoulders.  Turns out this is full of air and other stuff that when removed moulds to your body.  First thing customised for me.  It feels a bit funny as it happens, but only take a minute or two and it's all over.  This effectively becomes the underneath part of the mask assembly. 

Next stage is actually making the mask.  This is made of thermonuclear plastic.  They warm the "blank" in warm water for a few minutes, bring it in, lie it over your face and stretch it into place. They make sure your nose hasn't been squashed by this  and then proceed to finish moulding it for a good fit.  At this stage I also have a plastic tongue depressor type thing between my teeth.  Seems if they keep my tongue below the nuking, it is going to be a good thing and for mask making purposes, they need to allow for this gap.

And yep, at this stage, the thing is fastened to the table.  This doesn't feel too bad because at this stage the mask is just like having a warm towel over your face.  They next bring out some cold towels which they apply over the mask to start to cool it and make it set.  Again, not overly unpleasant as the mask is still quite warm on my face.  From start to finish, I am held down for 10 minutes or so.  With about a minute to go, my famous gag reflex kicks in and the tongue depressor has to go.  They're not overly upset by that at this late stage.

So, come 12:30 I'm dressed again and off to fill in time until I need to return at 2:00pm for the fitting and scans.

Duly return for my 2 o'clock to be told they're running 20 minutes late.

They're finally ready for me and off we go to the CT Scan room.  At this stage, things start going downhill.  First off - the mask is a bloody big unit.  It covers my entire head and upper shoulders.  I hadn't seen it when it was freshly moulded, so this was quite a shock.  Secondly, the size of the mesh through which I can see is bloody small and looks actually non-existent in places.

Hey, I'm a big boy, we can do this.  Now lying on another table and waiting for the mask to be placed over my head.  I'm not going to lie.  At this stage I freaked out. I'm not sure if it was the mask actually being clipped down that did it or I just had a panic attack, but once the mask was on I was fighting a feeling of not being able to breathe.

Obviously the mask needs to be a really good fit - and it is - but at that time the fit around my chin area felt too tight and I couldn't swallow properly.  I know you breathe through your nose and/or mouth, but I just could not overcome it.

We tried three times, each time removing some of the packing, but it was no use.  In the last attempt, we managed to break one of the clips, so the girls had to go and sort out replacing it.  Helen and I stayed in the room and despite trying to calm me down, this attempt was over and we all knew it.

Liz came back and said they'd talked to Mr Wilson (the radio oncologist who has taken over from Mr Hamilton) and when he has a chat with me about treatment, he'll prescribe something to calm me down.

All sorts of feelings are going through my head at this time.  Disappointment in myself for not being able to face the mask today.  Trepidation about will I do the same next time.  Worry because I know how important this all is to my treatment.  And the realisation that there is going to be a number of things along the way I won't be able to control.  This is indeed going to be a joint effort.

I'm duly bundled off to one of the consultation rooms to await Mr Wilson.  I'm feeling really low at this point.  I feel I've failed at the first hurdle and am struggling with that.  anyway, Mr Wilson duly arrives, we talk about how I feel, etc and I'm given a script for a drug that will chill me out.  Take a pill 20 minutes before the scan and chill for up to 3 hours.  I'll give anything ago to get through this first one.  Some other things might have had an impact on today and I'll eliminate them in future, but I'm really confident that once I'm past the first couple of sessions with the mask, I'll be alright.

Other tidbits to come out of my conversation with Mr Wilson.  Every effort will be made to limit the treatment to the left side of my body, so the saliva glands on the right should largely survive, and it is possible that some of the left might do as well.  The treatment will be over a large area to start with and narrowed down to very specific points as we work through.  

Had a conversation with Wendie (oncology support nurse) when I got home and felt a lot better after that.  She is going to try and get the district nurses to touch base so they can give Jake a once over.

All in all a crap day, but at the same day a very important one.  I have to accept that this is bigger than I can handle on my own and it is time to accept the offers of help and support that have been and continue to come in from family, friends and concerned acquaintances.  That revelation  - and acceptance of it - on its own made today worthwhile.