It’s Been a While and a Little Crazy

So. Here we are.

8 weeks after Mathew died. What’s been going on with you? How are you doing? You might think we disappeared to hide for a while but that isn’t the case. Not at all. Let me catch you up on happenings around here.

The week following Mathew’s memorial service, John and I decided to buy a travel trailer and go camping. We travelled a lot before the kids got old enough that it created more problems than we could solve; John and I travelled a lot in the years before we had our pumpkins. After the kids were born we started with a tent then moved to a tent-trailer when I quit the tenting gig. Then, when work life and home life became intertwined while we were living in Alberta, the stress of everything became too much for me and I was too tired to go anywhere on weekends. John took them, on his own, for many a weekend. I don’t recall when we sold the tent trailer… for the last 2 years out west, John brought the kids to New Brunswick to visit family in the summer. I never had enough leave to join them so didn’t return to the Saint John area until we moved back 10 years ago.

With Mathew growing up, and his disabilities becoming much easier to see and work with, we decided that trips would go with hotels. It worked fine for us and especially for Mathew.

Now, being in a different situation, we decided to do the camper thing and give it a go. We spent some time going to the different dealers the week following Mathew’s memorial and found a 28 foot Shadow Cruiser that we ultimately bought. It is a 2014 only 3 years old and set up how we liked. It has a slide-out, and a dinette, couch, and two little rockers at the back.

In order to tow this rig the Honda Ridgeline had to be upgraded to something with the right towing capacity. We traded “up” to a 2016 Dodge Ram that I could barely climb up in to until John put running boards on the side.

With the new truck we hooked up the trailer from the dealer and left for some camping. We went to PEI (home of Anne of Green Gables) for a few days, spending equal time shopping for the trailer and sight seeing. Travelling did not lessen our grief; we just wanted to leave everything behind and go away to be by ourselves.

After PEI, we drove to a camping site near Lunenburg, Nova Scotia. This is a world heritage site for good reason; the area is beautiful. We did Peggy’s Cove in the fog and driving rain; Lunenburg on a beautiful day and “The Ovens” on another gorgeous day. The Ovens is located on private property and consists of walking along the cliffs (bluffs?) and going up and down stairs to admire caves and old sailor stories.

The final leg of the inaugural trip was to stop at Seafoam, Nova Scotia. We arrived and a mini-disaster happened when we attempted a drive-thru to our camp site. The back end of the camper didn’t quite make it before hitting the post carrying the water and power cables & wires, etc. It caught the back end of the camper, gashed the side and then pulled the back left corner of the camper out. The campground owners were very kind and helpful; there was no charge for shearing off the water pipe or pulling the electrical box off the wooden post. They were more concerned about our trailer. While we waited for the water to be turned off (it resembled a fire hydrant being flushed!) a small group of men gathered and pondered over the trailer. Nothing like a little accident to bring good souls together.

The camper is made of fiberglass so it isn’t a bang-back-into-place situation. On closer examination however, you could see the underlying floor in the exposed gap between camper and its back wall. That floor was black and rotting off. The wood crumbled in our hands it was so rotten.

That didn’t happen overnight or in the 7 days we owned it. Neither John nor I were in any mood to continue the trip and have the camper exposed to the elements. We called the dealer and told them what happened and mentioned the rotted floor. We drove it back to the dealer’s – which was closed for the weekend by the time we got there – and disconnected the trailer. It was left in their yard to be looked at the following week.

That was on June 23rd we dropped it off. We have yet to see it. The floor was damaged and so the dealer replaced the rotted areas. The trailer is now waiting to get in for the fiberglass siding to be fixed. But……………………

Life is funny………………

We returned home June 23rd to find a couple of messages from the family doctor’s office, wanting to speak to John about the ECG he had done just prior to us leaving on our camping trip. The messages were worrisome; sometimes you just know from the tone and how it is worded. We waited all weekend and then John called the office on the Monday, only to learn the doctor was away that week!!! The earliest John could get in was July 6th, in the following week.

The next day however, I stopped into the doctor’s office to pick up some paperwork (dealing with Mathew’s estate) and the doctor heard my voice. He popped out to ask how I was doing. I gather it is impossible for our doctor to not see his patients even when he isn’t scheduled to! I replied that I wasn’t going to talk to an illusion since we were told the doctor was not in that week, so I wasn’t sure WHO that image was. He laughed and then I told him I was very worried about this test John had. The doctor replied he needed to speak to John about it asap, and so we could come in the following morning. Wow. I was so relieved to hear that.

The following morning we both went in and Dr. Poirier indicated the test showed there might be a problem with the blood flow to John’s heart and he needed to see a Cardiologist. John was advised not to do anything beyond simple walking until he saw a Cardiologist. Oh and if he started to get any kind of chest pain to call 911 or rush straight to the emergency room.

This was just 3 weeks after Mathew’s death. Not wanting to sit and around and stress even more we drove an hour down the road to the beautiful St. Andrew’s. It is a flat area on the coast and it wasn’t overly hot or crowded. I kept both eyes on John and we did a casual walk. On the way home we stopped at a diner and had a very generous and excellent meal…. *sigh*…. of fried fish, clams, etc. Oh and don’t forget the yummy Strawberry-Rhubarb pie too.

On the drive home, the Cardiologist called for John on my cellphone (did the guy have eyes on us at this diner? Was he there, watching us??). A stress test was set for John the next morning. So on Thursday 25 June, John went in for the stress test. This is where they connect a bunch of electrodes on to your chest and have you walk on a treadmill. John’s test was great ~ until he sat down to rest. Then, as the Cardiologist put it, the ECG bleeped a concerning movement on the paper that earned John a dye test.

The offer was to admit John immediately to get the dye test done either that day or the following day or, for John to leave the hospital and wait for an appointment to be arranged as an outpatient…. maybe in a week or two. In the meantime do NOTHING and call 911 if the chest started to hurt.

No way was I letting there be any further discussion on option #2. I never gave John a chance to speak up before I offered him up for immediate admittance. That being agreed to, John was admitted to the Cardiac Intensive Care Unit and prepped for an emergency. We watched the procedure on the television a kindly nurse brought us, and heard about the risks of what they were going to do.

Then they took John! I called his brother and wife. The same brother I called the morning Mathew died; Harry and Christine who came to get us, brought us home, made the cremation arrangements for us and got Mathew’s ashes when they were ready. John’s other siblings were in the United States, vacationing. Thinking about the risks again, I then called John’s parents. He didn’t want me to but I could not NOT call them in case something happened.

We gathered to wait for John’s return. It took about 2-1/2 hours or so, but John came back with 3 stents and a 100% blocked artery on the right side of his heart. When I heard that I thought I was going to drop to the floor; it was too much. The angioplasty put 2 stents in one artery – the so-called “widowmaker”- that was 70% blocked. The second artery was 90% blocked and it got the third stent.

The blocked artery had developed its own blood flow. There was no heart damage detected and the Cardiologist said John had been experiencing angina. The only restriction was no driving for 48 hours and that was it! John sees the Cardiologist again in August for a follow-up and is supposed to have an stress echo done. This test stresses his heart and then it is checked; the purpose is to see if, by opening the other 2 arteries, there is any change in the function of the right side of his heart.

Only after John had returned and we knew the outcome did I call Kristen. Even then I waited until she left work because this was her Dad. I was so relieved to call with good news and to let her talk to her father. Ottawa is a long from us and coming on the heel’s of her brother’s passing, very upsetting.

John’s siblings weren’t supposed to know until they got back from vacation. Shall we say someone… a certain individual…. let the cat out of the bag a few days early. Wendy, Alistair and their families were on their way back and the news had a happy outcome but it was still upsetting to hear.

The only symptom John had was an unusual feeling in the right side of his chest while walking up an incline; some discomfort. He first noticed while doing an evening walk, when the discomfort hit and he had to rest going up a hill on his walking path. After a while it grew to where walking up the grass on the side of our house produced the same feeling. This started a month or two before Mathew died. John didn’t want to deal with it while Mathew was in the hospital, etc, and so the ECG was scheduled only after.

It shook us up that events might have happened differently. So, parents and children, if YOU notice something different please don’t wait. Get checked out right away if only to laugh at what turned out to be indigestion. Everyone would rather that than something serious and no one is immune. John certainly doesn’t look like a heart attack stereotype. But upon closer examination…. his father had a heart attack last year, his maternal grandfather dropped dead of a heart attack at age 53 – the same age John is, AND his paternal grandmother had a heart attack in her 60s or early 70s.

We upended our diet and are now eating much, MUCH better. It took nothing for me to switch gears and start the heart-healthy eating. The four year’s of Mathew fighting cancer took a toll on us and our mental and physical bodies. I am very out of shape, after sitting at Mathew’s bedside for so long.

After this, John and I decided it was time to return to work. I felt reasonably capable of doing my job without falling apart and I’m not sitting home while John is at work. Our house is so empty and missing the larger-than-life personality of Mathew.

We returned to work 2 weeks ago and so far it is going okay. It is a good distraction but it is so hard to come home every day to the empty and the still. The door to Mathew’s room stays open and we go in there to grieve here and there. I try to remember than Mathew didn’t want us to be sad or to cry. He didn’t realize that him and his sister are our lives and our happiness. Much of it died when he did. So even when we are smiling, laughing and carrying on, the grief runs deep underneath.

That’s the thing about grief. It has its own timetable and there isn’t much you can do about it. There are triggers all around and you never know what is going to set off a new wave of sorrow or when. You don’t know when it will completely overcome your senses and how long it will last. You just keep breathing. Minute by minute sometimes. We are only 8 weeks into this hated, despised path so I can’t comment on where we will be in another month or three. I do know this, our love for our children will always be first and foremost for us. No matter where they are.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

A Hard Day

When Mathew was born a birth certificate was created. Over the years he got his own health care card, a passport, a SIN, bank accounts ~ all the little things that proclaimed he was alive! He was here!

Now it is all in reverse and is happening in fast sequence. When my brother-in-law went to the funeral home to direct them as to our wishes, it turns out the funeral home does take care of closing out certain items of the deceased. The death certificate was issued and we were given many “Proof of Death Certificates” that have to accompany paperwork…. anywhere…. to establish Mathew died. We handed in his health care card, his SIN card, his Handicap Parking Pass…. and probably more, I just don’t remember right now.

Today I sent in his passport along with the damned “Proof of…” that I despise so much. It broke my heart. We got the 10 year passport with so much hope and promise of his future. He had it for 3 years.

Tomorrow John and I go to the bank to prove Mathew is dead once again and to collapse his Registered Disability Savings Plan we paid into over the last years. The government will get their money back and I expect, any interest accrued. We will get the principal back. It is such a new program that the person responsible for creating and advising about the plan didn’t know what to do to stop one.

Social Development couldn’t stop June’s payment in time so Mathew got his “welfare” payment in a joint account he and I have. I called Social Development today to send it back. The lady told me who to write the cheque out to and to drop it off in person. I replied I had absolutely no desire to stop by in person and could I not send it in by mail, instead? Yes it turns out I can and that’s what I did. If I can’t keep my composure on the phone why the hell would I want to show up in person? It is another lousy step in erasing Mathew from the world around us.

It kills me every time John or I do another task to stop Mathew’s essence of being. To be slapped in the face again that my son is gone. It won’t end soon either. There is always tax time next year to bring this all back.

Oh how I wish we were filling out the birth notice, applying for a health care card…. anything to put him back into the living world.

Damn it hurts.

Mathew’s Star

One of Mathew’s Christmas gifts was a package to name a star. I found this at a Chapter’s store and thought it quite a unique idea.

The package contains information about the star enclosed and how to register the name that is chosen. Mathew never opened or paid much attention to most of his Christmas gifts because the tumours in his lungs started to cause severe pain by then.

Over the months both Kristen and I mentioned this gift to Mathew and she later told me that he joked about calling it his “night light”. He never did choose a name before he died and Kristen and I both decided we liked the name he kidded her with.

Thus, today I registered the name for this star. It will be known as “Mathew’s Night Light”. Sometime later I will look at the coordinates and use the resources provided to find out where this star is in our night sky.

I want to look up every night and know that Mathew’s Night Light shines down on me.

I miss him so.

We Carry On

Mathew passed away 13 days ago. A lifetime already. We had his memorial last Saturday and everyone came to remember him. It wasn’t easy and there was plenty of tears and laughter. We put things of Mathew’s out for people to take in remembrance of him. I hope each person got something meaningful to them. He had so much stuff. He collected what he liked and that spanned many interests.

John, Kristen and I went through Mathew’s things and sorted most of his stuff. We kept the items that were most special to us or to Mathew himself. His closet is still pretty full of things we couldn’t let go of.

I can’t speak for Kristen as she returned to Ottawa on Sunday but I expect she feels similar to us. We have good moments interspersed with many terribly difficult ones. Our house is just so damned empty and so are our lives. Even before Mathew was diagnosed with cancer our lives revolved around him; more so than the “regular” child because of his disabilities. Now, suddenly, that is gone.

John and I keep as busy as possible to keep the emotions from overwhelming us. It doesn’t always work and odd things will pop up to suddenly throw a monkey wrench into our mood. Settling affairs of a young man who lived at home still takes a while and requires dealing with people ~ something we aren’t very good at right now. It comes down to small things; like returning Mathew’s passport, looking at his books, showing his damn death certificate everywhere that needs to see it.

Walking by Mathew’s room is enough to reduce me to tears. Giving over to grief for one second is followed by my heart ripping apart again. The hole Mathew left is just so big and so awful that it can’t even be put into words.

I try to be grateful when I’m grieving. I know Mathew wouldn’t want to see us like this but it is so hard. So I start thanking Mathew for different things and being grateful he didn’t suffer longer. I’m grateful he was our son for 24 years and for the joy he brought us. I thank him for making me so much a better person than I was before he and our daughter were born (they both shaped me into a better person!). There is so much to be thankful for and I don’t want to lose sight of that. I have pictures of Mathew everywhere and whenever I see one, I say, “Hi Mathew!” as though he is peeking out at me. I want to keep looking at him, just as I like to look at Kristen’s pictures around the house. It just hurts to know there will never be any new pictures of Mathew. He will never grow one day older or talk to me again.

Our lives are changed and they can only go forward. It is so early in our journey of grief and there is no shortcut to the pain lessening.

Sometimes it is less and sometimes it is more.

I miss him so terribly.

 

 

 

 

 

 

 

 

 

His Ashes are Home

Yesterday was another punch to the gut.

Mathew’s ashes came home.

Another bout of breaking down and wondering how did this all happen and why is my son dead?

I will tell you that Mathew died in his Mom’s and Dad’s arms, just as he wanted to. His ending was swift and unexpected and caught the nurse off guard. We had maybe 10 minutes – at most – that the end was coming. Not even time to call anyone.

We are okay. People are worried about us; I guess that is what you do when you love someone. This was an ongoing situation and we knew how it was going to end. It did not help the pain of actual loss, of not seeing our beloved son again.

I will just say we “are”. We live minute by minute, some good and others bad. Some hours are filled with tears and others seem almost normal until we remember one of us is missing.

I do not want to bypass this time. I don’t want to medicate it away. I want to feel the pain and despair of losing my child. His life is worth that grief and anything less is an insult to his life and our grieving process.

We have tremendous support which may be why we are holding up as well as we are. John’s brother and his wife took on the task of cremation arrangements and started registering Mathew’s death to the various departments and Agencies that need to know. Other family members stepped up when I asked them to help plan our private gathering this weekend, and are preparing for it. Others are more than eager to help with any task, big or small, to help us out. We couldn’t have done it as well without all of you.

We are spending these couple of days resting, sorting things out and just living. We are just scratching the surface of grief as it grabs you when least expect it. It is a long and permanent path we walk now, with pitfalls and tears threatening at the edge.

We are okay.

 

The End is Coming

On Friday (or..Saturday….hmm…time is blurring for me) it was made known to John and I that Mathew has a couple of weeks left at the most.

His pain meds are increased daily and how long he will wake up is not clear. I wish to spend every waking moment he has, with him. So I packed my bags this morning and am moving in with him until the end. The palliative care ward provides every necessity of home so the only reason to come back is for our kitty.

If John wants to keep coming home then I know he will give Gimley some loving otherwise we have family more than happy to help us.

Family and friends dropped by the hospital to say good-bye this weekend. I love them so much and for taking the time and love to make special trips to see Mathew. It is the hardest thing to do, to say good bye to someone you love, and I hope the privacy I gave them at the end of each visit was enough. Thank you, thank you for the love and devotion you showed to Mathew in his life. You will likely never know the impact you had on making his life wonderful. He loved every one of you.

Mathew still thinks he is coming home and we will do nothing to dispel that notion. He understands he can’t come home until the pain is managed and we are 9 days at the hospital and his pain increases every day. He is so thin it is heartbreaking and he is so weak he can’t sit up.

I don’t know if I will be able to blog from the hospital; they are having problems with their wifi. When I did blog when Mathew was in cancer treatment, from the Oncology floor, my iPad wasn’t very accommodating. I will be updating Facebook for those who can “see me” there.

We do not believe in God and in fact, Mathew kind of kicked the spiritual advisor out of his room (John was there, I wasn’t. It was funny though). If praying comforts you then please comfort yourself. Please do not pass messages of prayer to us if you know of our practise/belief. A “praying for Mathew” is fine and I understand the heart is coming from ~ it is enough and done with love. Other than that none of us wish to be preached to. Those who love us know this well enough; it is more meant to some individuals who feel it is in their best interest to try to “save” Mathew or encourage us to find God in this “hour of need”. I respect you and know faith comforts you. Please respect us and know we have our own comfort.

Words fail me. I cannot convey how we are all feeling. The nurses and doctors adore Mathew and he is very happy with them and their care (as are we). It is a terrible, terrible thing to lose a child and there is simply nothing that can express the pain.

Now I must go to my son. I was with him when he came in to this world and I will be there for every minute during this time he leaves. Love to you all

 

 

 

 

 

 

 

 

 

 

 

 

Pain Flare? Maybe

Mathew’s leg pain increased significantly through this morning. By the time John arrived, around 1 pm, the doctor had already approved an increase in Dilaudid. Over the course of 24 hours the increase would compare to 50mg morphine (a total over 24 hours). He is on a small/moderate dose of Dilaudid and there is room to increase the dose by quite a bit. Another option is to add other drugs to the mix.

Mathew’s nausea has decreased significantly and he had one shot of Halidol (sp?) in the last almost 24 hours. It turns out the medication is NOT Haldon as I thought, but some drug used in psychiatric wards. Yay. It was discovered one of the other benefits of this drug is to manage nausea hence Mathew getting it.

It was lovely to see Mathew much sharper today. Yesterday his eyes rolled in his sockets; I’ve never seen that before! They twirled and his pupils couldn’t focus (contract/expand) very well. Today his eyes were normal and the sly little fox piped up with one of his infamous remarks during the frequent nurses’ checks. His witty personality peeked through here and there.

Mathew did say, during one of our little conversations, that he “is coming to the end of the line”. Yes that does refer to his remaining life. He and I talked a little more about palliative care and why he was there. He needed reminding that he came for pain control and he agreed it was the best decision. This increased pain today could be the “radiation flare” that happens as a side effect. The doctor pointed out it could also be progression of the disease along his spine. Yeah; wouldn’t want that nasty ol’ cancer to stop growing for a day, would we?

Today marks the first day John and I are implementing a kind of visiting schedule. If Mathew was healthy he would love company to visit and chat. The truth is, he is exhausted and in a lot of pain. He sleeps pretty much 24 hours a day ~ he is dreaming for the first time in quite a while, which pleases him and his doctors. It means he is getting much needed rest. We also understand family and friends wanting to see him. So we decided that today, Friday, visitation will be from 6-8 pm. The lounge is next to Mathew’s room and if there ends up being a queue then visitors can gather in the lounge. Only one or two people will be allowed in at once. The visit will need to be done in a quiet voice because noises bother Mathew a lot. He may or may not talk but probably not. He knows you are there he is just too exhausted to speak. Lucky you, visitor, your talking companions will be either John, myself, or both of us!

This arrangement keeps Mathew’s wellbeing front and foremost and all of us have his best interests’ at heart. Mathew agreed to this with the condition he not have to talk or do anything.

Out of Towners will have special consideration due to travel and time constraints.

This also addresses the need for John and I to focus mostly on Mathew and to keep ourselves energized (ha ha ha). When there are visitors it is hard for us to devote our everything to our son. We need the quiet and space to spend time taking care of Mathew and ourselves. This is another step in the nearly 4 year journey this cancer has taken us and it is the most difficult.

We recognize and thank every one who keeps Mathew in their thoughts. Be it from far away or close by it doesn’t matter; we know he is loved and so does he. Being this ill does not give him energy to think about anything or anyone other than himself and trying to rest.  Should Mathew recover some energy then his focus will direct outwards and thoughts of his iPad and family and friends will become important to him again.

The exception to visiting hours are exempted for his Nana and Poppa. They are his grandparents and get special privileges just by being his grandparents.

Thank you everyone for helping us work towards a comfortable and quiet environment for Mathew to get professional and expert help at this most difficult of journeys. I will let you know when (and if) he is able to come home. He is in the best of care and he knows it.

Now, I’m going back for an evening visit before I return home for the night.  Please send some spring weather our way. These cold, rainy days are OVER RATED!!

 

 

 

 

 

 

 

 

 

 

 

Radiation is Done

Radiation was done yesterday. Mathew ended up having his right shoulder radiated along with his right hip and top of right femur. I wasn’t present when he went down for the markings on Tuesday. I was surprised when the radiation staff prepped him for his shoulder when we went down yesterday. They asked for Dr. Naz to see me which she did. She explained that the shoulder fractures easily and Mathew cooperated so well the day previously, that she decided to do the shoulder too.

I asked Dr. Naz how big the tumours were but still got a blurry reply. The radiation focussed on an area, which calculated an area for clear margins around the targets plus a little fudge factor in case Mathew moved during treatment. Normally special precautions are taken in the form of some kind of mold to hold a patient still and exactly in place. Mathew only had a rough form that was manually manipulated to hold his legs in place. The table he lays on is quite narrow and there isn’t room for his arms to rest naturally at his sides.

Back to the tumours though; they are centimetres in size. I imagined millimeters so was surprised. Additionally the doctor mentioned several tumours in the right hip/femur location…. okaaaaay…. I knew there was one on the right ilium and another at the top of the femur but knew nothing about SEVERAL. I am a detail-oriented person and it bothers me when things that I consider to be significant are not shared. The radiation to Mathew’s hip/leg area was done as one area, size approximately 24 cm by 18 cm or so. That was significantly different than me imagining two tiny areas. The shoulder area was 14 cm by 10 cm or so. Shock clouded my hearing and memory.

It was difficult reliving radiation, as Mathew had it to his spine 3 years ago. Even harder? Mathew saying goodbye to the staff he recognized on the path there and back. We bumped into a few of the Oncology nurses who treated him and that tore me in half. The farewells have started and the hospital background doesn’t make it any easier.

Mathew asked me yesterday, when he could go home. He mentioned he really likes the nurses but not THAT much to stick around. Speaking to the doctors we believe another week or so, if all goes well. The pain from radiation ~ should it afflict him (please don’t. Please!) usually happens at the 3 or 4 day mark. The pain lasts for several days before it disappears. The doctors want Mathew to stay in the hospital during this period to ensure proper pain relief should this common side effect show up.

There are also other things going on. Mathew hasn’t woken up for any length of time since switching to Dilaudid. This drug is 5x more powerful than morphine which could lend to his sleepiness. It could be pain relief giving his poor body the rest it needs. Mathew is still fighting nausea and is receiving Haldon every 4 hours for relief. He has a butterfly needle in his arm so the injection goes into the connector piece rather than him receiving a new shot every 4 hours. He gives the nurses a big grin when they dose him with anti-nausea.

The nutritionist popped in to see Mathew while we were at Radiation yesterday. I laughed when the nurses told us. They did tell the nutritionist there isn’t any point in coming back but apparently she insisted she will. I wonder if it is the same nutritionist as when Mathew had his first chemo treatment and ended up with the wretched stomach tube for feeding? I almost hope she does visit again because I need some levity to this whole business.

Mathew has not eaten a thing since entering the hospital. In fact, for a day or so before he went in he hadn’t eaten either. So all of his meal trays have been turned away, unless there is something on it John or I might want, or if we can set something aside for Mathew should he eat again. I normally just wave it away. Nothing looks appetizing or smells appealing yet.

Mathew is dying. Why would anyone try to force food on him when he obviously doesn’t want to eat? I applaud the hospital in trying to find something Mathew would eat; they offer chits so we can get him a meal from the cafeteria. The cafeteria with very, VERY reduced hours and closes by 2 pm. Still, thank you for the offer. We used it extensively when Mathew’s appetite picked up during his first treatment 3 years ago. There is always someone willing to run out and get Mathew anything, ANYTHING, he wants to eat at basically any hour of the day or night. He has more willing servants at his fingertips right now than the royal family!! So no, we are not worried about him passing on the trays the hospital provides.

I’m not sure anyone realizes that Mathew has not left his bed in about a week now. That, combined with not eating, is going to make him too weak to get out of bed at all. This is something we will have to discuss before Mathew comes home. It is our intention to get him home again if at all possible. John and I switching off every 24 hours but that gyps Mathew and us out of those 24 hours. Time is so very, very precious right now and I despair when I’m away for 24 hours. John and I need the sleep and spend most of the time away catching up on rest. When Mathew is home we can sleep in the same room, pop out for short breaks and then be back with him. He prefers both of us being with him now and I hate that we can’t be.

As of this morning, Mathew is still sleeping or dozing. The entire staff is wonderful. Mathew, as sick as he is, still loves to talk to them when he can, or listen when they pop in to check on him. He likes his room as quiet and as dark as at home. I brought in a small fan from home because air that doesn’t move puts me to sleep or makes me groggy. Mathew loves the sound from home and it keeps the floor noise down. It is a much quieter floor than anywhere else we’ve been and there is none of that continuous beeping of machines that drive you nuts elsewhere. I either read, cruise the web or watch Netflix with earphones on. The hospital is trying out free Wifi for everyone and so far it is working quite well. It is a bit slow when downloading but there were no issues with Netflix.

It is time for me to jump in the shower and then prepare to head back up to the hospital. When it is my turn to come home for 24 hours I am very, very tired. The room has chairs that fold out to a single bed-type-thing but I don’t sleep well. There is still a frequent trail of nurses checking on the pain pump, giving injections, etc. I wake up each time they come in and also every time Mathew moves. He changes position frequently and is still not pain-free. We help him move and change his sheets frequently as he is sweating as profusely there as he did here.

He did provide me another belly laugh though. Mathew was dressed for the ambulance ride; the usual outfit anyone wears outside. At home he was most comfortable in underwear so that’s what he wore. Within 24 hours of being in the hospital guess what he is wearing again? I don’t even know when it happened or how it did, but by golly, he is back to his usual daily wear! He cracks me up.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Trying Dilaudid at the Hospital

Mathew is in Palliative care at the hospital.

It isn’t smooth going there either.

The ambulance trip ended up going well for Mathew. I was permitted to sit in the back with Mathew and that did everything to allay his fears!! The paramedics were sympathetic, kind men who were gentle and explained everything to Mathew. The one in the back with us kept up a conversation about music, so Mathew was in his happy place!

At the hospital Mathew was taken straight up to his room on the Palliative care floor and friendly faces were waiting for us. Mathew’s pain pump was switched to the hospital version (same thing just belongs to the hospital and not Extramural!) and shortly after 5 pm he was switched to Dilaudid.

The starting dose ended up being too low for Mathew and he suffered more than usual through the night, even with the break-through doses. As we were both up all night (although he told his Dad I snoozed pretty good) my mind is a little foggy about specific times…. Around 6 am the doctor switched up the dose and after that Mathew could rest better.

He then started to feel just dreadful and nauseous. Since then he is receiving a lot of anti-nausea medication and is pretty loopy at the moment! He is still getting break-through but he is sleeping today. His whole chest heaves in and out which makes it hard to watch. You can tell breathing is no easy feat for him anymore.

The Radiation Oncologist came to see Mathew this morning. She looked him over then we spoke out in the hallway. In the end we agreed Mathew will receive radiation to his right hip and the top of his right femur. I don’t know how big or small those tumours are; I’ll ask in the next couple of days. Mathew will go down to Radiation tomorrow, for his skin to be marked where the beams will be concentrated. When there is an opening, he will go down again to receive one big dose to those two areas. There is a concern that the cancer eating into the weight-bearing bones can cause fractures. Well, shoot. Hadn’t worried about that until now! The idea of the radiation is to slow progression of the cancer and the mineralization will help strengthen the area. Or, I could have heard everything wrong in my sleep-deprived state and am feeding you hogwash. This is how I remember it though!

There will be no radiation to either area along Mathew’s spine. Either the lower area or the T11-T12 area. Those lesions/spots are close to the spinal cord; in the lining surrounding it and any radiation there would have to be carefully managed over 8 small doses. Mathew won’t do anything beyond one dose. The one area, at the L3, was already blasted with as much radiation as could safely be given him so anything else there is quite a risk.

The possible side effects of the radiation Mathew will receive is possible sunburn look to the skin….and pain. Apparently 4 out of 10 people who get this radiation develop worse pain for 3 or 4 days following treatment before it goes away. Mathew has NOT been told of that potential effect and neither will he be advised ever!!

The radiation, combined with potential side effects, plus managing his complicated pain supports Mathew’s stay at the hospital to a possible week or more… *sigh*…. It is quiet there, he has his own room and the chairs fold out into cots and the staff is very friendly and helpful. Still. It isn’t home.

John and I are trading off every day unless something big comes up at which time we will both stay at the hospital. It is imperative for us to take turns to properly rest, undisturbed at night.

I am updating frequently on Facebook but on here only when I am home.