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.

 

 

 

 

 

 

 

 

 

 

 

Palliative Care Ward

Tomorrow Mathew will be transported by ambulance to the palliative care floor of the hospital, for pain management.

Mathew decided he had enough of the pain at some ungodly hour this morning and yes, he was up all night again in pain. The on-call nurse came in earlier today and changed the access of the pain pump. It is now in his lower belly and gives him freedom to move his arms a little more. The same nurse made the arrangements for tomorrow.

Fortunately there is a bed on the palliative floor because Mathew will have his own room and it will be much quieter there.

The ambulance is for safe transportation. Mathew is too weak to safely travel in our vehicle; after last week’s fiasco I would be very worried about him collapsing again.

The staff at the hospital can change Mathew’s medications much easier and have access to drugs not available for at home. By that I mean he can be introduced to a wider range of stronger drugs but needs close observation he can’t get at home. Once he is on a good dose then he can come home with that new medicine.

It is now time for me to go to bed. I dozed off and on over the last 24 hours but that is all.