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.

Quick Update

The new dose of morphine isn’t working. Mathew didn’t sleep again last night. The nurse was already in and her and the Pallliative care team (including Dr. Wildish) are liaising with the Radiation Oncologist to discuss options.

Mathew is not able to lift himself up, from his legs, anymore. The tumours may be affecting the nerves and muscles too much. One of the doctors also said that Decadron also affects muscles. This means that Mathew needs both John and I to get to and from the bathroom and on and off the toilet itself.

We are waiting to hear what the doctor wants to do. More later.

ps – I received the employment services sick pay. *whew*

ps2 – we are in Southeastern New Brunswick so the worst of the incoming rain is not supposed to impact us the worst. It is more to the west. The rivers are flooding from the spring run off already so there are flood warnings issued. We live on a lake which rises during and after storms however our house is high enough to avoid a problem. Let’s see what “Murphy’s Law” says now that I made that statement…

The Hospital Bed is Set Up

Mathew’s bedroom is reconfigured to hold both his queen sized bed and the hospital bed. So far he just looks at the electric bed balefully and won’t try it. Eventually I know he will. The big bed is pushed against the wall with the window and the hospital bed sits beside it (think of how twin beds get set up with a drawer between them; same idea). We moved his tv stand out and put it in the garbage. It disappeared long before the garbage truck came by so someone got themselves a good deal!

The double dresser was moved back into Mathew’s room. It was in our room for months, to make room for the mattress/cot we put into the bedroom to watch over Mathew. John took our Living Room tv and moved it into the bedroom and hooked everything up on the opposite wall. The bigger tv is in there so Mathew can see it without sitting close in his chair. Remember he is supposed to wear glasses although, aside from Disney World, he hasn’t for years.

Mathew was quite uptight by all the hustle and bustle in preparing for the hospital bed and then setting everything up. We already had single bed sheets because Kristen had her single bed until a few months ago.

The recliner fits in the corner of the room between the hospital bed and the closet. It faces the tv so whoever sits there can watch it too.

Dr. Wildish dropped in for a visit again because Mathew’s leg pain is still not well controlled. Mathew fell asleep last night, exhausted, and did manage to sleep until 7 am. He is feeling better and much more chatty but refused to leave his bed because of his legs. Dr. Wildish was loathe to increase the morphine again after yesterday’s significant hike. She came by to see how alert Mathew was and to talk to him about his pain. Afterwards she decided to increase his morphine by a little bit more. We are waiting for the nurse to come with her magical key that opens the machine to increase the dose.

If that doesn’t work then she is considering switching to Dilaudid. Dr. Wildish is also going to talk to the Radiation Oncologist again, to see if Mathew can receive radiation in one “big” dose and what the chances of success are.

Prior to moving the dresser-drawers back to Mathew’s room they were cleaned and sorted. I set items into one of three bags; 1 for garbage, 1 for storage/give away and 1 for keeping. I had to hold each item and decide if it fits Mathew or if it is something he wants to keep. In essence it was housecleaning his effects before he dies. It was horrible. It was a sudden whammy of grief knowing he will never see these things again and won’t be well enough to care about them.

Today was a hard day.










Pain Pump and Hospital Bed

The pain pump was set up yesterday. It wasn’t a good day at all. Mathew realized it meant another step towards the end of his life and became upset. That along with the Decadron made for some trying times. I had to speak to him about his language when the nurses were here. He dissolved into tears saying he was so scared and I told him that was ok but the language was not.

The needle was inserted in the backside of Mathew’s left arm, where it shouldn’t be bumped and used as much as his predominant arm/hand, the right one. John had picked up the cassette with the morphine so the nurses inserted it into the little, portable iv machine. It is a small, heavy machine that is in a fanny pack. Mathew won’t wear it so John or I handle it when Mathew moves around.

The initial dose is halved as medicine absorbs through the interstitial area under the skin differently than by oral pills. It was not nearly enough and Mathew spent another sleepless night in agony. We were given the 24 hour number to call but didn’t. I slept through the night as John took over Mathew’s room.

I called the doctor and Extramural first thing when I got up. The nurse stopped in around 15 minutes later and shortly thereafter talked to the doctor and changed the dose on the machine. The nurse has a key to access the machine and without it there is no overriding the system. So yes, there are security precautions. Tracy first collected the data from the 19 hours Mathew was hooked up, confirmed the needle was still in his skin and the machine was working fine. Then she reported that to the doctor and the change was made.

The continuous morphine went from 3.75 to 5.5 mg. The breakthrough was raised from 7 to 10 mg/dose. The relief came quickly. While he is not completely pain free it is so much better than last night! He is on another 36 hour stretch here and will probably fall asleep early this evening.

Mathew’s decline in mobility is enough that we hurried the hospital bed along. I didn’t know that the OT was arranging for a bed to be bought for Mathew; hence the long waiting period. We called her today and spoke about a loan as that is all that is needed. The bed will be delivered tomorrow. It will be so much easier for Mathew to get in and out of bed and sit up. It is painful to watch him move about right now.

John will rearrange Mathew’s room and move one of our bigger TV’s in there so it can be watched from bed. He is wonderful about doing that for Mathew. He used to bring a small tv and one or two gaming systems to the hospital for Mathew, where he set them up for use. It helped those inpatient stays go by much better.

This is one of the transitions that is difficult for us. It brings us closer to the end and is a clear reminder that the cancer progressed enough to require these changes. Mathew so wants to stay at home and I am hoping we can carry out his wish.

ps. Service Canada called me today and said the issues with my file should be cleared up and I should see some money by Friday. My fingers are crossed!








Pain Pump

We  met with Dr. Wildish and reviewed the CT scan report. The only thing on the report that I either forgot or didn’t hear is a spot on Mathew’s right #8 rib. Otherwise let’s just say it is everywhere.

We are moving forward with a pain pump. It will take a day or two to get everything in place to set it up. There is only one pharmacy in the Saint John area who has someone trained to fill the cassette (plastic box) that will have the morphine in it. A needle will be inserted under Mathew’s skin ~ somewhere on his arm ~ and a butterfly thingamajig will cover it and have a connector piece on it. The pain pump will connect to the connector piece. The pump will be programmed by a nurse with the prescribed dose and schedule so it automatically dispenses when it is due. There is a button on it that is preprogrammed for break through morphine that Mathew can push as required. It will only send out a certain amount once each hour so there is no way he can overdose himself.

This gadget will be carried in a fanny pack as it is an automatic 24-hour-a-day pump. Sometimes very ill cancer patients don’t absorb oral medication very well and this injection method is far more efficient for the body to use the morphine.

Dr. Wildish is liaising with everyone who is involved with making this happen.

If it sounds like gibberish it is because Mathew and I pulled another all-nighter. He is still plodding along, in pain and grumpy as hell. That Decadron kicked into gear and gave him an appetite and the Energizer bunny stamina. It ain’t pretty people…. I am heading off to bed for some sleep as John took the day off.

First though I am trying to get through to Service Canada again because of a major clusterfook regarding my sick leave claim (for older folks; the employment insurance program). I was on compassionate leave for 6 months and then went online and followed the instructions to apply for the concurrent sick leave. Read: I FOLLOWED THE INSTRUCTIONS.

Everything has since turned to crap regarding receiving money from the government for the 16 weeks I am entitled to. I have called and spoken to 4 people already and also went in to personally visit the office in Saint John. It is one of those never-ending circles that make me want to tear my hair out. Apparently I was supposed to file a concurrent claim rather than a “new” one.

The people at the Service Canada office are front line workers and cannot access anything in the file other than to look at it and tick certain boxes. So I have to call the infamous 1-800-you-are-in-hell number. The one that gives you the royal run around without giving you an option to talk to someone. Somehow I did though and the last time I spoke to a representative, she went through the information and said the problem would be cleared up by April 25th and to check on my online file for an update.

I called her after I tried to file the second report and the Service Canada website flashed me an exclamation mark and “error you must call” message.

I figured good faith and all that, everything would be fixed. So I went on yesterday to file again and now it says I missed the last report in so the whole claim has to be reactivated. When I check in the file it says a decision is still pending. I call the wonderful 1-800-we-hate-you number to be told they are too busy to talk to me so try to get help on their website.

My eyes are flashing, my temper is boiling, and I don’t feel.nice.any.more.

I may have to call tomorrow.

Good thing I’m not a single parent relying on this money to live on. It rates right up there with my employer’s new pay system, the infamous Phoenix system. Service Canada had to set up some dummy account to get me money last fall because Phoenix can’t spit out paperwork in a timely manner. Given that so many people are either owed thousands of dollars or have to pay back thousands of dollars because of this new and “improved” pay system the government insisted on rolling out even though these critical errors and flaws were well documented before it completely rolled out….. I am SCREWED.

Rant over, sleep is needed.

John is taking care of our beloved grumpy bear and hopefully his pain will be much better managed within 24 hours or so.















Oh Sh*t!!!

Dr. Wildish called me on Friday with an update on those CT scans.

If you recall Dr. Wildish manages the Palliative Care Floor at the hospital and Dr. Hemmings looks after the Extramural (outpatient) side of patient care. They are switching places effective Monday, 1 May, so now Mathew falls under the care of Dr. Wildish. We met her last June when he transferred from active care to palliative care.

So… Dr. Wildish had a printed copy of Wednesday’s CT scans. That preliminary review we had? It was nothing. NOTHING compared to this. This report reflects the true tragedy that is Ewing’s Sarcoma. I told you before it is extremely aggressive and without anything to slow down or stop it…. well, I won’t see sizes until we receive our copy of the report on Monday morning.

Until then, this is now what we know: There are numerous cancer lesions in Mathew’s dura, with one particular tumour growing into his skull. There is cancer along his spine at the T11 and T12 and 3 new tumours in the soft area around the spinal cord at the L2 and L3. The L3 is where the original tumour is, if you recall. There is cancer in his right ilium and another at the top of his right femur. There is cancer on his breastbone (at the front where the ribs join) at on his right shoulder blade. There is cancer throughout his liver and in both kidneys and adrenal glands. There are new tumours in both lungs and the lining (pleura) of both lungs. The tumours that were already there have grown. His left lung has collapsed a little where that liquid is at the bottom of the left lobe. The lymph nodes throughout his abdomen have cancer in them.

As his arms and legs weren’t scanned there is no information on them but who the hell cares by now? Pretty sure there will be spots there too.

I asked the doctor is any of this new cancer was evident at all in that last scan done on December 22, 2016. The answer is no. This spread and grew in the last 4 months. That is the devastation of Ewing’s Sarcoma and I know of cases where it spread even faster – more like it exploded in just a few weeks.

Dr. Wildish is meeting with us on Monday morning to discuss these findings and to determine what happens next. That would be medication, radiation, etc. Radiation is already a no-go as far as Mathew is concerned.

I did tell Mathew his cancer spread. He knows that there is more in the lungs and what was there already grew. He knows he has a spot on his right leg, in his spine at the original location, and also in his right shoulder. He already knew this was probable based on his pain and it is so important to legitimize it for him. He told me he wants to sit in on Monday’s meeting. He has the right if he wants it; there is a lot of time between now and the appointment to reconsider. We shall see what happens.

In light of this report Mathew’s Nortryptyline (sp?) was already doubled and so was the Decadron. The morphine was put back up to 90 mg both morning and evening. None of that has impacted the pain in his legs. Our goal on Monday is to push for something that will relieve the pain. He has suffered enough.

Mathew is very unsteady on his feet right now, both due to general weakness and also side effects of the new doses of medication.

Speaking of him that is where I am heading back to right now.













The Cancer Has Spread

It isn’t good news.

Mathew had his CT scans this morning. Once we returned home I called the doctor’s office and left a message that he had just finished his scans.

Dr. Hemmings called me shortly after lunch and asked if she could stop in and discuss the preliminary findings with John and I. About half an hour later she showed up at the door and we got the “first glance” news. This means she went over the scans with the Radiologist for a preview. The scans haven’t been measured against previous scans or detailed for a report.

The basic report is Mathew’s cancer has spread. It is in his brain, throughout the lymph nodes in his abdomen and in his liver. There may be something at the original tumour site as well. The tumours in his lungs grew and there is a small amount of liquid in the bottom left of his lung.

The tumour in his head, Dr. Hemmings thinks, is in the right lobe. She is not trained in scans and was looking at them backwards as they are presented on the screen. It is in the dura (underneath the skull there is a lining over the brain; that is the dura…simplified). It appears to have bone/skull involvement as well. The doctor thinks the “cyst” behind Mathew’s ear is the lymph node, which is located there, affected. There is a little bit of swelling at the tumour site in Mathew’s head but hasn’t affected the brain at all. Meaning that nothing looks pushed aside or squished. There are 2 other lesions on his brain but at first glance they aren’t sure if they are benign or cancerous (ha ha ha ho ho ho ~ benign… as IF).

For some reason there was no scan done from under Mathew’s chin to the level of his lungs. That means no one knows if something is affecting Mathew’s right arm. I guess we’ll take it on faith there is something…why the hell not?

The doctors did not see anything compromising Mathew’s spine. If there is something affecting his right leg then we’ll have to wait for the report. As I pointed out, at this stage if Mathew has pain then no one is going to tell any of us it is imagined. It just means the medical community hasn’t figured out where it is coming from yet.

Mathew is weaker than we realized. He made it to the truck and to the hospital. He got through the appointment okay and then John retrieved the truck and met us at the hospital entrance. We were both helping Mathew from the wheelchair to the truck and as soon as he tried to lift his right leg he collapsed. John and I grabbed him as he sank so he did not land on the ground. Trying to get a firm grip without hurting him was impossible as a couple of people rushed to help. John and I had to grab Mathew any way we could to hoist him into the truck.

The truck isn’t jacked up on wheels; in fact it is a smaller truck but a full cab. It is the Honda Ridgeline.

The next problem occurred when we got home. John pulled the truck up to the garage entrance and each of us took one of Mathew’s arms and put them around our shoulders. He managed the first, small step from the garage to the house. The second and final one… he collapsed again. He insisted we let him rest on the hallway and he could get himself up.


We picked him up and took him to bed.

Mathew slept maybe an hour last night due to pain in the right leg and stress over today’s CT scan. It was the first time he left the house in over two months. He was so upset about collapsing (sinking) and realizing how little strength he has. He asked if I was going to tell people and I replied damn right I was! His safety is our first priority and the more people around him who know the more help they can be. He thought about that for a minute and then declared, “Yeah! Tell people they can’t come over unless they are willing to help me!”.

Done, kiddo.

Mathew will NOT be told these results. There is no need for him to stress and worry over issues he has no control over. He trusts us enough to let us share what needs to be shared. As always I ask that you respect these wishes of ours. Mathew will just be told that the cancer affected his muscle here and there ~ which he already knows ~ and the doctor will adjust his pain meds to accommodate the information.

The Radiation Oncologist is reviewing his scans but there will not be any radiation. Mathew would have to be admitted to the hospital for the duration of treatment, which he already refused. As radiation would not extend his life then he doesn’t need to spend any of his precious time in a hospital if it can be avoided at all.

Sometimes if the lungs fill with liquid then a procedure is done to drain the fluid. The amount in Mathew’s left lung isn’t an amount to be considered and when, or if, that time arises then his whole health picture will be assessed before subjecting him to anything else.

That is all for now





















A CT Scan will be Ordered

So the weekend went by and it wasn’t great for Mathew. The first night on the new 90 mg dose of morphine went well, in that he slept from 11 pm to 6 am or so. That is a whole night for him these days.

Other than that there doesn’t appear to be much of a change as far as Mathew’s leg, arm and head goes. The palliative care doctor called to follow up today and we discussed current events a little more. The morphine is not working for the areas I mentioned. Over the weekend Mathew just sighed when he told us he was in pain and wondered the use of breakthrough morphine because nothing helped. He mentioned the pain is worse during the night (his leg).

In order to know how to proceed, Dr. Hemmings wants to do a CT scan to see what the issues are or to rule things out. The aim is to look for tumours on his spine and in his head. I requested that if those areas are being done for a scan to also be done of his lungs. We can see what changes happened in the last 4 months.

Dr. Hemmings thinks Mathew’s pain may be nerve related in which case morphine is not going to work. She chatted with Dr. Naz today ~ Mathew’s Radiation Oncologist ~ who feels the symptoms may be new tumours. I pointed out that should there be something new in the spine, along where the original tumour was/is…. then he already had his lifetime dose of radiation to that area. Meaning no more radiation.

That point is moot anyway because Mathew adamantly reiterated NO RADIATION. Dr. Hemmings said it would only be a week or two of radiation and that Dr. Naz could do most of the preliminary work without having to see Mathew.


Okay, so let’s move on then. I believe the CT scan may help Mathew’s team decide on how to best treat whatever is going on. There was no mention of that ultra-drug, the “Hydra- or Hydro-” something. Before doing much more tweaking of medication, the CT results are desired.

Mathew agreed to a CT scan today when I talked to him. It is the quickest and easiest test between the ones he gets. The MRI takes a lot longer and there is the matter of the tube in which a lot of people get claustrophobic.

Meanwhile, we are dropping Mathew’s morphine back to 75 mg in the morning and observing any changes. Perhaps it is helping with the chest area pain because he didn’t comment on that this weekend. He will still get 90 mg at night in the hopes of better rest. That nerve drug I mentioned in the last post will be postponed, again until the doctors see what the tests show. The clonazepam will continue ~ Mathew needs a small amount of Ativan in the morning and then nothing else. That decadron is a squirly drug that messes with his mood when it first gets in his system.

Mathew ended up sleeping through the weekend. He started one of his down periods which begins when he feels awful when waking up. Today is now day #3 without eating… sigh… and he has no interest in food.

John and I are becoming old hands at bed changes. On some days Mathew’s sheets need changing up to 3 times ~ if he lets us. I have taken to running a facecloth over Mathew’s head and upper body when he soaks everything, in addition to stripping the bed and changing out the pillow.

Mathew’s a little compulsive… obsessive… about his bed these days. The covers and sheets have to be just so and any wrinkles bother him terribly. Sometimes those sheet sets don’t pull very tight and so I am often straightening the sheets and tucking them in again.

Gimley likes to sleep with Mathew and often he is allowed to do so. After his 3 pm meal Gimley has a particular meow that is unique. It is the cry of him asking where are you and where can I nap with you? Mathew hates the sound but I remind him that Gimley is just looking for us. He hops up (er, scrabbles and tears his claws into the mattress as he drags his fat body up is more like it) and passes out on the other side of the bed from Mathew. If it is before his dinner then Gimley hauls himself up to the back of Mathew’s recliner, where I sit, and huddles there staring at me until it is 3 pm. So long as the cat is quiet, which he usually is, then Mathew enjoys the company. We aren’t allowed on the bed presently so Mathew is indeed feeling off.

Not too much else is going on. The snow melted and spring is trying for a comeback. All the birds are singing up a storm and the hawks and eagles are fishing for their supper in our lake. There is a pair of geese who like our backyard and waddle up close to the house ~ making looking for a nesting spot? They figured out, somehow, that we don’t have the dogs anymore so no worries about that.

More as it follows, as always