57) Confused - 24th December

The person I knew three months ago in Nerja is not the person that is sleeping upstairs whilst I write this Blog on Xmas Eve.

The contrast was mainly physical until now. Leigh-Ann has lost so much weight that she has gone from a "Perfect 10" to a XXS and now probably a child's size.

Leigh-Ann made a huge effort to join me at 
Muddy Waters for Breakfast this morning

She has no energy, which is hardly surprising when she eats almost nothing day after day.
Walking is slow and Leigh-Ann needs supporting.

All the above has happened over the course of many weeks.

The recent change has been her cognitive skills which have deteriorated quickly over the last 48 hours.

Physically and mentally she is now where she was at the worst point when she was taking morphine for her pain several weeks ago.

Leigh-Ann is very confused. 

Have you ever asked a really old person a question and the answer has been slow in returning? And then the response is often a request to repeat the question? And this can go back and forth for a while until you decide to change the question for something simpler only to get the same response?

This is how Leigh-Ann is at the moment.

Conversation is, therefore, non-existent and I have to coax her to do things like go to the bathroom, take her pills, lay down and sleep. All these things are challenges not because she is resistant or argumentative but just because she cannot compute them.

A well earned sleep

It makes me very sad to compare her now to the beautiful, fit, sporty, articulate and funny Leigh-Ann that I met over two years ago in Nerja.

No matter what her cancer tries to do to her it will never take away who she is: Leigh-Ann will always remain a beautiful person: kind, generous, compassionate and loving.

56) Sleep Patterns - 23rd December

Pain medication for cancer affects your sleep pattern.

After a while the patient finds it hard to sleep at night and easier to sleep during the day.

This has happened to Leigh-Ann. 

Leigh-Ann this morning

Dr "Z", (a doctor with an unpronounceable surname), her oncologist, warned us about this change weeks ago when we got her prognosis.

It happened slowly but got to the point where Leigh-Ann would go to bed and sleep for 3 or 4 hours and then be awake until the morning following which she would "cat nap" all day until the cycle started again.

This was very frustrating for her. There's not much going on at 3:00 am in the Legault household... She did a lot of reading.

It was also difficult for me. My sleep was regularly interrupted and we rarely woke up together.

Earla and Leigh-Ann
(I have no idea which is which!)

The problem seems to have been solved, however, by a magical drug that we simply call "Sleep" that helps Leigh-Ann sleep for 7 - 8 hours.

Despite the above the sleep patterns in the Legault household are strange or unconventional to say the least (to me anyway).

Earla and Michel like to retire early and wake around 5:00 am every day. The coffee goes on and the smell percolates throughout the house (that's a good thing).

Leigh-Ann now wakes later at around 7:00 - 8:00 am. I wake 30 - 60 minutes later and Sarah, well, to tell the truth I have no idea.

Michel and Earla then have "naps" during the day. Leigh-Ann dozes on the couch and I stay awake all day.

To say that we are not in sync is an understatement.

Quote of the day: When asked "how are you feeling?" Leigh-Ann replied: "Well, everything is a bit blurry." She then put on her glasses!

55) It's Snow Time - 21st December

We returned from Maui on Monday and stayed overnight in New Westminster, Vancouver, with Leigh-Ann's brother, Bruce and his wife Carol.

The next day we were transported back to Harrison Hot Springs by Earla and Michel and accompanied by Leigh-Ann's daughter, Sarah.

It seemed that as soon as we got back to HHS Leigh-Ann's pain level increased a lot.

Whether the warmth of Maui or being on her honeymoon had helped her physical and mental disposition or whether it was coincidental we will probably never know but her increased pain now we are back is certain.

My Office - Muddy Waters

Being back in HHS, means that the daily routine of cancer is, once again, the norm. Maui was a great diversion, a perfect distraction from reality.

The good news is that Dr Bull, Leigh-Ann's pain specialist, sorted out her pain meds and Leigh-Ann is comfortable once more.

Frozen Ice Cream Shop!

The contrast between Maui and HHS is unmistakable as is the weather. We had about 10 cms of snow yesterday and freezing temperatures. Also there are no palm trees in HHS or hump back whales in the lake...

Earla & Michel's house

Time for a warm fire, films on TV and popcorn. It must be Christmas.

54) Pills, pills, pills - 19th December

I am in charge of Leigh-Ann's medication. 

I make sure that she does not run out and also that she takes what she needs either as scheduled or as the situation demands.

Some of Harrison's Xmas Lights

This was quite daunting at first but now I feel like a Pharmacist. I know what, when and how and also the weird and wonderful names that pharmaceutical companies concoct to make drugs sound more scientific and effective!

"Okay guys, what shall we call this new drug?" "Oxymoranathan? Phonomanenema? Phloxydoctorine?" "We need to call it something that only trained pharmacists can remember and that gives it extra value so we can charge more!"

We do have faith in the drugs prescribed. For some reason we have total confidence that the Canadian authorities would only approve safe, effective medicines. Canadians are like that, super conservative. Naive? Maybe, but what choice do we have anyway.

Leigh-Ann has quite a cocktail cabinet of drugs...

Each morning she takes six pills, one liquid medication, one powder (diluted in water). During the day she takes a further four pills and then in the evening the same as in the morning (less one powder but plus one extra pill).

Electricity is Cheap here!

In addition she has fast acting pain medication that she can take whenever she feels pain. In an average day she will intake around 20-24 pills plus liquid medication and powders.

The drugs are for pain, anti nausea, digestion and sleep! 

The good news is that they work. (Most of the time).

Dr Bull, her Pain Management Specialist visited today and increased the dosage of the pain medication but assured us that Leigh-Ann is still on a low dosage in comparison to other patients.

I collected the new prescription from the local Pharmacy. Our new friend, Mohammed, the Pharmacist, gave us a box of chocolates for Xmas! All Pharmacists should be like Mohammed...

53) Back "Home" - 17th December

We arrived back in Harrison Hot Springs this afternoon.

Our "old" support team is together once more: Earla, Sarah, Michel and myself.

The journey had gone well, if a little chaotic. If you have never tried pushing a wheelchair and pulling a 20 Kg suitcase at the same time you have not missed out. It's a technique! 

We had hand luggage as well!!

Leigh-Ann's last warm Maui sunset

There are special lanes for wheelchairs to go through immigration and security which makes getting through the airport easier. We also got to board the plane first. On the other hand we could not use the escalators and pushing up ramps is hard work and I had never appreciated just how large airports are when pushing and pulling 100 Kgs!

It is a relief to be back. For the last 10 days I have pushed, massaged, fed, watered and generally looked after every aspect of Leigh-Ann's life. It was fun, tiring, stressful...

It went well but I am pleased that I now have help.

We had only been back in Harrison 15 minutes when one of the "Home Care Nurses", Dani, arrived to catch up with Leigh-Ann's condition and review her pain medication. She advised us to increase the dosage to compensate for the pain in her back. The Pain Management Specialist, Dr. Bull arrives on Thursday when he will increase her long lasting medication dosage.

This evening we are watching "Modern Family" and "The Big Bang Theory".

It's like we have never been away!

52) Last Night - 15th December

Tonight is our last night in Maui.

It's been wonderful but we are glad to be leaving now.

I am relieved that it all gone so well. Much better than expected. We had forgotten the Maxeran (anti vomit medication) but it turned out not to be necessary.

I had a bad day!
Notice how my face and t-shirt are the same colour?

Leigh-Ann's pain has definitely increased.She needs to take more pain medication than 10 days ago and she has one pain in her back that just refuses to go away even with medication. She deals with it and, as always, does not complain.

Maui is wheelchair friendly which was a relief. We got around quite easily either walking (pushing) or by taxi. It's been a good upper body workout for me!

We have eaten out for the last two nights which was also a surprise. 

It's non alcoholic!

I was not expecting to be able to dine out at all. Leigh-Ann's pain and also her comfort level is unpredictable. She needs cushions to sit on and rest against and she can find sitting for a prolonged period uncomfortable. 

Leigh-Ann can also suddenly become very tired which makes planning anything like a meal out, shopping or going to the cinema difficult.

Despite there being a lot of "normal" things that we couldn't do there was also much we could do and we have had a great time.

Maui sunset - 15th December

51) Our "Normal" Relationship - 14th December

Ours is a "normal" relationship. What I mean is that it is normal for us. 

Things changed when Leigh-Ann became ill.

Firstly, there is the physical stuff. 

I can't hug her whenever I want. She is in pain and I have to ask her permission first and then go gently. Sometimes I cannot hug her at all because it will hurt too much.

A good book

We can't go for a walk. We go for a push. That rules out anything spontaneous. That's because we have to get organised before we can do anything "spontaneous": medication, a drink, a snack, extra clothing, making sure that there will be wheelchair access.

Dinner at "Duke's", Honua Kai Resort

Now there's the mental things.

It is a big responsibility looking after someone in Leigh-Ann's condition and it can be stressful. I am always looking out for her whether she needs it or not.

There is also the worry. Unless you are a very positive person it is difficult not to always worry about the "what if".

This is our relationship in a nutshell. Hopefully it is different to yours but for us it is our "norm". It is what it is and we love it.