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.