H is for hospital

I’m doing a retrospective blog after having been in hospital last week and not being able to do any blog posts. I’ve done it in a sort of diary format, so hope that is ok. …. Actually, what am I saying?! It’s my blog and I can do what I want, that’s the beauty of it surely!? Ha,ha! I know what it is … close proximity to my mum for 5 days. Her self-deprecating attitude has rubbed off!

Tuesday

After a sleepless night (yep, literally sleepless, I think I may have got 20 mins uninterrupted sleep with my head hanging over the keyboard) I decided to go in to the hospital and see if they could sort me out. It's definitely reassuring when I am there; it's so familiar, I feel 'at home', if that's possible.

So mum and I arrived by taxi (Ed was teaching) and we got settled into the ward. Introduced ourselves to the 2 other ladies and one man, hang on, sorry, introduced ourselves to the three ladies!!!! Yes, there was a lady-man in the bed opposite me. It’s hard to describe why we made the initial mistake… oh, I know why, because she looked and sounded like a man! She was about 67 ( I know this now because it was her birthday on Friday) and giant-size in every way, she was tall and sturdy, with very short hair and a really masculine demeanour. The fact that she was in a nightie kind of gave me the indication that it might be a woman, and then one of the nurses came in and addressed her as “Mrs…”. Bless her, I am sure we are not the first to make that mistake.

I explained what had been going on the previous week and about my lack of sleep etc. and the doctor said she needed to discuss my current medication and other options but they immediately upped my morphine plaster from 25 to 50 mg.

I had blood taken from a young boy ( in his early twenties I guess) and he was really heavy handed and lacked sympathy, which I would say, is one of the basic requirements to be doing that job. I know I am sometimes difficult to get blood out of (no smart comments please!) but usually the blood takers on ward 5B are very experienced and efficient. He was efficient, but just rough. He didn’t say anything and at one point, it did really hurt, so I said “Ouch!... are you nearly done?”.. he just said “Completely done, press on that”….. mmm, not impressed and resolved at that point to refuse to let him near me again if he ever turned up! I still had a bruise from it on Sunday. Luckily he didn’t return and I didn’t need to have blood taken again anyway.

Ed popped in in the afternoon for a bit and then he and mum went home. I was so tired that I was just sleeping anyway, so no real point mum being there. I think mum left around 15.00, and when they came back in to visit at about 18.00 I was still asleep. I had a lot to catch up on. No need to worry about it spoiling my night’s sleep.

Dinner was predictably unappetising, unidentifiable meat, massacred vegetables, boiled potatoes and a bowl of natural yogurt. Because I had been asleep, I hadn’t sent a message to mum or Ed to ask them to bring any food with them. I had a couple of sugar-free fruit bars and a banana and you can also get snacks from the drinks trolley when they come around (twice in the evening) so I was fine, but mum and Ed were not happy with me for that. Mum started looking panicked and said she could go downstairs and get me something…then she listed a few things she could get. Anyway! I went to sleep very easily and woke up two or three times during the night, the nurses brought me some different painkillers but they didn’t seem to work very well.

Wednesday

I had an appointment for a biopsy booked in for 11.50 in Nieuwegein hospital. I don’t know why it was there, unless it was because they had spot earlier than in Utrecht. Anyway, Ed dropped mum off about 10.30 and the ambulance came at about 11.00! It was very weird getting on the narrow stretcher and being folded in blankets like a burrito, then seat belted in – there was no way I was escaping! Mum came in the back of the ambulance with me and was very quiet, I thought it was all quite exciting even though we didn’t have the sirens on!

We got to the radiology department and had to wait about 20 minutes, I was there very early anyway, then got wheeled in. They took a snippet from a tumour in one of the lymph glands in my neck. It wasn’t painful at all, and was all done very quickly, it is just a bit weird because you can hear everything they are saying and doing. It was probably a good job I was still tired, because I think I fell asleep during the procedure. After the biopsy, one of the nurses called to get an ambulance to take us back and she didn't want to just leave us in the corridor so she arranged for us to be taken to a quiet family waiting area near A&E where we were given soup and had tea and coffee. I am still continually impressed by the service and efficiency of the hospitals here. We were back 'home' by about 14.30 and the nurses also sorted out some extra lunch for us because we had missed the trolley!

Ed picked mum up again for the afternoon and this time I gave them a shopping list of food for dinner! Can’t remember what delicious offerings were on the menu for the evening but I was being realistic and ordered something edible and with the nutrition still in, rather than having been cooked out of it.

I spent the afternoon marking some IELTS written tasks – I got this from an examiner whose daughter-in-law is taking the exam (in New Zealand) and wants some tips and help. She’s taking the exam on 17th June so it is just a few papers and I am being paid for it, so it works doubly in my favour… it is a distraction and gives me something to do and I get some money for it. Perfect.

Mum and Ed came back for evening visiting hours about 18.30 with food, so I had some salad and fruit and it was so delicious… even a couple of days of this food is enough to make you really appreciate food on the outside.

My medication has been increased again, they have upped me to 75g morphine patch and added a new drug in to help the nerve pain. I had physical examinations by three different doctors, my own doctor, a neurologist and one of the pain team doctors. They think that the leg pain is nerve pain, caused by the tumour in my bone pressing on a nerve. They haven’t done it yet, but talked about giving me a really strong painkiller… something that, when I heard it, I was really shocked by. Methadone. They want to wait for a couple of days and see how this goes, mainly during the night because that seems to be when I have most problems, even though I do get pain in the day…but it is probably because you are busier and more occupied in the day time.

The lady opposite me really does seem to have no control whatsoever over her bodily function noises! Burps, farts, at whatever length, volume, or time – it’s a free for all! The fact that she has a commode doesn’t really help! Of course, I feel really sorry for her, she also has lung cancer, the other lady in the ward too, and has lots of additional problems with it, maybe because of her age.. she is on oxygen now and has had her lungs drained more than once and has problems with her legs so is not very mobile, and because she can’t get to the toilet without help, a commode is necessary at night. However, she seems to have given up any shred of pride and is using it during the day. Yes, she pulls the curtains around the bed, but a curtain is not a wall and you can imagine the noise. Remember, she burps and farts at will, so when she is on the toilet, she literally lets rip. It is so bad, that it’s funny and at points, I did feel like I was in some really cheap comedy sketch show!

As I said before she is literally larger than life, as are her noises, so it wasn’t really a surprise to find that she isn’t exactly softly spoken on the phone! I was trying to watch TV and had to turn the volume up to 80 (the highest it will go) and she was still louder! Another non-surprise arrived in the form of her sons…more giants. They made Ed look short.

Thursday

I had to have a morphine injection in the night as well as my other pain medication because I couldn’t sleep. Think they also gave me a sleeping pill, but that didn’t work. So I felt really tired.

I had the appointment for the bone scan, which meant another ambulance ride to Nieuwegein,. I had to be there at 12.00 for an injection but the actual scan wasn't till 16.30. The ambulance men were a bit late (you'd think they had more important things to do!!) so we didn't leave Utrecht until 12.00 but they had called ahead so the Drs knew I was going to be late and that it wasn't my fault (otherwise you get some aggressive response from the receptionist!!) Went straight in and had the injection which was fine, I was slightly apprehensive given my experience with needles, but the guy I had was excellent and I was just about to ask him whether it would be painful and if I would feel the fluid going in, and he said it was done! It was a type of fluid, I guess with some kind of colour that goes into your bloodstream and is then absorbed by the tumour in the bones. We had to wait about 4 hours so we got some lunch and sat in the sunny lunch area, then headed back to the waiting area near the scan room because they have a couple of beds there for people to use… so I did! Mum sat next to me and I set up my picnic area, then slept for at least an hour, finished off my picnic and then I was asked in. Mum was able to go in with me. The scan was to see what the take up rate of fluid was like. After the scan, we waited less than 15 mins, in the meantime Ed managed to get there from Haarlem to be there for the meeting. Basically, the results were good, the absorption rate was good which means that the drug, Sanarium, will work. It is a drug which kills cancer cells so should reduce the size of the tumour, and that, in turn, will relieve the pressure on the nerves which is causing the pain. Ta-da! Good news. I made an appointment straight away so am having the injection on Tuesday. The only slight negative is that it affects your red and white blood cell levels so might mean I need a transfusion (or two) now and again, so have to have weekly blood tests to monitor it at the beginning. No problem for me.

Mum burst into tears when we came out of the Dr’s office because she hadn’t been able to understand anything and hadn’t been able to read our reactions. There is so much information to take in that we need to concentrate and I have to concentrate harder because it is in Dutch. Anyway, I think is it stressful for mum, seeing me like this and having all the tests etc. so tensions are running high. Speaking of which, after the appointment, mum and I were being taken back to Utrecht by ambulance and Ed had his bike at central station so he needed to go home and get the car before he could pick mum up anyway. So we asked what time she wanted picking up…straight away or would she just wait until later and leave later when Ed was coming to see me anyway. Phew! It got a bit tense, mum just repeating her mantra “I’m easy, I don’t mind, what do you want, I’ll fit in with you, I don’t mind, really I’m easy, I’ll eat anything” ! and Ed getting more and more frustrated, because he just wanted a definitive answer to his question so he knew whether he had to rush or not. Eventually we came to an agreement but mum had gone pursed lipped so I knew we had crossed the line!

Well, we had a good journey back again and when we got back my dinner had been lovingly left on my bedside table. It was goulash and rice which actually looked ok, so I decided to risk it and got it warmed up. The weather had improved massively so we decided to get some fresh air and went and sat and ate outside on the balcony. There was a sense of freedom in being outside.

The doctors had discussed the possibility of me coming out on Friday but it had been debatable because they still weren’t happy about the pain at night so they decided to keep me another night. Mum changed her flight again, so that she left Saturday evening instead of Friday morning in the hope that I would be out before she left.

Friday

It was actually quite nice in the morning because I didn’t need to be anywhere or have any appointments, so despite being woken up by the dulcet tones of the trolley ladies at around 7 am, I felt quite relaxed. Ingrid picked mum up and they came in around 11.00. It was good to see Ingrid, I was on my best behaviour, not showing any signs of pain of discomfort and trying to play down the fact that I was in hospital (hard to do when you are actually in hospital, but I tried!) because we haven’t mentioned it to Ed’s parents who are on holiday in France for a few weeks. Ed’s mum is a real worrier, so we decided it wasn’t worth telling her about the hospital stay unless necessary.

Ingrid stayed for an hour or so, then she left and mum and I went back to the ward, I think I dozed a bit and then the ladies from lunch arrived with their trolleys bearing gifts; not only the usual delicacies we always receive, but we also got a present from FNV (a trade union) which is located opposite us. The present was one of those adult colouring books, in a special cover with coloured pencils included. Really sweet, everyone in the hospital got one, basically because this FNV office was becoming the central office. A really nice gesture. I haven’t done that colouring thing before, though when I have been ‘helping’ Hattie do some colouring in the past, I have to say, I have found it really therapeutic. Ed was, mm, how can I put it, less than enthusiastic about the book and crayons, though he thought was really kind.

So that was present number two, present number one had had arrived while I was with Ingrid; a new genuine male patient joined us. I’m not sure what his problem was (not being flippant!) but he was clearly exhausted so he was asleep most of the first day.

After our final meal a couple of young girls who work at the hospital al came by with a single gerbera flower for everyone! With it was a card saying (I will try to translate)

“If you are reading this, you are the best. A fighter who is unbelievably strong. Each day that you go through and remain positive, is a winning day. This is a small gesture to show that you are thought of. With love.”

How lovely is that? And of course, that made me cry! Being the most mobile, and youngest, in my ward, I volunteered to go in search of a vase and we each put our single flower in and it took pride of place on the table next to the window. Beautiful, four sunny yellow gerberas. The girls had brought them in because they were going through Ramadan which is difficult, and they wanted to show that were were being thought of.