B is for Back in the clink

So, yes I'm back in hospital again... this is getting boring, I know all the staff, I know the breakfast, lunch and dinner times, I almost know what food they are going to serve on which day (not that difficult because it is all horrible) and as for the soup with meatballs in, I just give up! For this reason, I have done another diary-style enty so you can have a real feel of what it's like to be in hospital here! (just what you wanted I'm sure!)

Tuesday 27th June

What's the difference between A and B?

Um, well there are hundreds of differences of course, not least that A is A and B

is B!! .. but it's about people. I'm talking about the staff in ward 5A and the staff in 5B.

Yep, back in hospital again for the pain and because of my ever expanding foot. We came in late Tuesday afternoon and I was kept in, which I expected. I spent Tuesday night in ward 5A, not sure why really because when I was moved to 5B later the next day they asked me why I hadn't been brought straight to B. Of course, I didn't know but the point is that I spent a night there....and survived it, but only just! Of course I am being dramatic but at certain points in the night, it didn't feel like that. It's all about the pain, that is why I came in, the puffy foot was the catalyst; it was so painful and I needed something to help so that I could sleep. This was all passed on to staff of 5A (Ed and I heard them do that as I was being wheeled upstairs) so it was not the negligence of the ER staff.

So first of all the staff got me some food, which they also offered to Ed, which was sweet, then helped me settle in (my own room!). We went through the medication I am on now, but that is changing almost on a daily basis at the moment so that was fine. I got some painkillers and tried to get to sleep. I don't know how long it took before I had to call them, but when I pressed my buzzer it seemed like ages before anyone came. When she did eventually come, this is the exchange:

Her: what can I do for you?

me: can I have some painkillers?

Her: have you got pain? (No hint of irony)

Me: aghast and through pained expression (not sure if she could see this as she pointed her little night time torch directly in my face!) and gritted teeth "yes, it woke me up, it's a pain score of 9 and I need something now. Either nose spray or Oxycodon.

She hesitated because of her lack of knowledgeable, or experience which is fine during the day with a supervisor present who can immediately take over and sort it out. However, it's not fine at night when she is solely responsible for patients who clearly know more about their own pain medication than she does.

Well, whatever time it was, once I had the medication, I went to sleep, thank goodness.

Wednesday 28th June

I woke up quite late for me, around 7.00 and was in some pain, but thought I could cope with it for an hour, and wait for my normal morning medication which I get at 8am. I was planning ahead, knowing the breakfast buffet bonanza would be there around 7.45 and then the nurse with my morning medication. So I had a hot shower to try and relieve the pain (sadly lacking a bath!!) and would be ready to go for my scan scheduled at 8.50. By 8 am when there was no sign of breakfast of the morning nurse to do the normal checks etc. and my pain was really quite bad , I pressed my buzzer. I know that when you are waiting for something to happen it always seems to take longer than it does, but seriously. At 8.30am no one had come, I limped into the corridor to find some member of staff.. I would have settled for a cleaner at this stage, I found a lady just outside my door who was dealing with the room next door. I explained my situation and she said she would go and find my nurse for me. It took another 10 mins or so before I actually got some pain medication which was kind of being thrown at me on the bed as they wheeled my away to get my scan. It was so disorganised.. and all the time, I was thinking “this would never happen in 5B!” Well, the scan was done and it was all fine in the end. When I got back I was told I was being moved to 5B which was such a relief, all the staff are nice and they are familiar with my background etc. so it is just easier there. I did have a lovely chat with the junior girl who had taken over for the morning shift and she explained that her buzzer had run out of battery that is why she hadn’t arrived. I also apologised for being rude because I had been in such pain, I had been really short and grumpy with them! She was really sweet and said I had no reason to apologise.

I got moved to 5B in the afternoon – they wheeled me in and did the hand over – you know the usual stuff “She’s got cancer, is a pain at night, speaks Dutch with a funny accent and sometimes looks at you oddly because she probably has no idea what you have just said. She doesn’t seem to eat her evening meals and has a strange aversion to the meatballs that appear in every soup regardless of how it is described. Strange. Apart from that she is quite well behaved, doesn’t make a mess in her pants and is quite self-contained so no-one needs to help her shower or go to the toilet (thank goodness!) We have noticed that her legs are becoming a bit hirsute and we are trying to think of a way of telling her this without causing offence… which is actually very un-Dutch of us, so maybe we just tell her she’s turning into a big hairy monster and it needs attention.” So, handover done, I was put in temporary storage in an empty ward while they got my space ready or me. I asked for a private room and they said that wasn’t the plan, but they would see what they could do. I did a lower lip wobble just for good measure. Within about 10 mins I was wheeled over the road to a private room (hurray).. which had big columns in front of the windows so it was really dark. Well, I didn’t like it, but it was better than sharing with unknown noise-producers!

Ed came in to see me in the evening and he bought me in some more supplies to keep me going because the food wasn’t great, again. Some kind of meat with boiled potatoes – I’m not sure how they manage it, but it seems as if they have actually sucked any taste out of boiled potato. There is definitely no seasoning going on anywhere in the vicinity of them being cooked but they seem to be blander than bland. That is quite a skill.

Woke up a few times in the night but it was almost a pleasure because the staff from 5B are so attentive that they arrive within a couple of minutes, it is almost as if they are waiting outside my door to come in and soothe my pain. They delivered my pain meds, checked if I needed anything else and then with a sympathetic glance, disappeared again into the night!

Thursday 29th June

I should have been flying home on Saturday 1st July, but with all that is going on, had to take the sensible decision to cancel it. Fuck! It’s a real bugger, another change of plans, I really thought I’d be fine with this, and the doctors said it wasn’t medically unsafe for me to fly, but they really recommended that I be aware of the reassurance being close to the hospital here gives me, and if I was at caela’s and I had even worse pain or some new pain, then I would be worried and it just wouldn’t be worth it. I know they are right, but it’s still really upsetting. Not going to see the kids, Grant or mum and dad. I have seen mum fairly recently and she will also come again and caela is going to book a flight to come over on 8th July but I want to be at home as well.

There are so many specialists coming in and out all day, and it would be really nice to have someone here with me but that’s just not possible because it’s all so random. Today, I had two visits from the pain management team. My consultant is Dr Timmerman, but he seems to be a top dog so he is never available, so I have been assigned his ‘underling’ who is also a pain specialist, incidentally as I found out, one with a shit bedside manner.

The whole point of me being in here now is to get me as pain free as possible. That does seem to be an impossible task at the moment because I always have some level pain, but they deem a score 5 (out of 10) or under as reasonable. I do have moments in the day when my pain level might be as low as 2, but mostly it’s a 5/6 or quite a bit higher. Well anyway, they have been meddling with my drugs every day. Increasing the morphine plaster that I have on my skin to 150 mg (I was on 12.5 mg for months until about 3 weeks ago) I’ve had new drugs added, namely methadone (!) and Lyrica (something for nerve pain) and a few others. Well, this morning the pain man – think he’s called Herm, so I will call him “Harmful” because that is how I feel about him, and had several points to discuss and suggestions to make about increasing doses of different meds. I know they want to increase methadone but I am really against that because of the effect it is having on my concentration and brain power. It’s now taking me ages to finish writing a message on my phone ; I usually start it, then drop my phone (because I have fallen asleep) and start again, often looking back at my last sentence which is gibberish. Staring at a (small) screen really doesn’t seem to help (now I have my laptop to write on which makes a huge difference.)

So Harmful came in with his suggestions, which I was against and explained why. He then went on to talk about other options for pain relief one of which was something about inserting a tube into your spine which would release pain relief periodically. Hang on! That sounds horrid and are we at that stage yet? Isn’t that really a last resort type of thing? Then, almost in the same breath he asked what my life expectancy was and if I knew but just didn’t want to say. There was no hint of sympathy in his tone and to be honest I was speechless, and then I did well up, which I am really angry about. I don’t want to waste tears on someone like him. People who are kind and nice to me, make me cry but not fuckers like him. I just said that we hadn’t discussed it and I wasn’t interested in his spine suggestion.

He seemed to pick up on the fact that the vibes I was producing had cooled quite significantly so he just said he would go back to Dr Timmerman and discuss possibly increasing my plaster to 200mg. When he left I was really upset but was also determined to fight even harder. Honestly, how can you say that to anyone in that tone? He did come back in later that day and was slightly less harsh, just saying that they were going to increase the plaster to 200mg and leave everything else as it was for now. Talk about insensitive!

Friday 30th June

Esther and Bernd came over to visit in the afternoon, to make sure that I stayed awake, we walked around to a waiting area instead of staying in my room! I was dropping off even when I was mid conversation, it’s really embarrassing but I just can’t help it! When we were walking back, my nurse came up and said they had been looking for me and saying she thought they had lost me (slightly dramatic, have you seen how slowly I’m moving these days?) and that a transport had been ordered to take me to have an MRI. When they say ‘transport’ we are not thinking the limousine of the indoor walkway, ‘the golf car”, they might mean you will be shifted in your own bed, sounds really lazy, but actually it is really nice! You don’t need to do a thing. The other option is wheelchair and you are wheeled along. Well today’s transport did consist of a wheelchair and two old blokes pushing, one training the other! You are never too young to learn!

The MRI itself is fine, but it is 40 minutes lying on a hard bed, and that means lying on the spot that is causing me the most pain! It’s also really loud so they give you headphones, but the radio station they put on was horrendous, mostly adverts and then shit chat and a (rubbish) song interspersed now and again. Well, I survived that and went back upstairs.

Ed came round about 18.30 and we were just chatting when the ward doctor came in to give us some news about the MRI. She said she thought we’d want to know before the weekend (not really) but they had seen quite a few new tumours in the pelvis area and not only in the bones but also in the muscle. This is probably a likely cause of some of the pain I have been having. She said that Femke was going to come around in the morning to discuss in more detail (not sure what more detail I needed/wanted to be honest). It’s another slap in the face with bad news, and we are becoming a bit numb to it all. Also, being logical and realistic, I could have worked out that if I am having more pain, after radiotherapy on some spots, then it might make sense that there are new tumours causing the pain. Well, the next step, is that the MRI scans are sent to UMC the university medical centre there to the lovely doctor who was really kind and said about Pansy and Ruby and he will look at them and decide if radiotherapy is really an option and if so, ship me in this week and get it done. Keeping fingers crossed. I also have to keep reminding myself that the immunotherapy should be doing its job and reducing these tumours anyway. I know it is early days so we have to be patient but that is what we are hoping.

Saturday 1st July

When Janneke, the ward doctor had come in she said that Femke would be coming in to see me on Saturday morning so we organised that Ed could be there too. He came in for about 9.30am and we saw Femke, but she didn’t really tell us any new information. The tumours are spreading and now appearing in new places in the pelvis and spine, luckily not anywhere near nerves because otherwise that would then maybe involve risk of paralysis! WTF - I really wish she hadn’t told me what I hadn’t won! I mean come on, there are loads of other things they didn’t see on the scan and they don’t tell me all of those do they?! I hadn’t even considered paralysis before now. Well anyway, that is not the case, so I am not going to worry about that am I?! She said she’s sending the photos today so that hopefully on Monday we can schedule a date for radiotherapy in. I hope so, I just want the pain to be sorted out and then be able to go home. They aren’t really keeping me in, it is kind of up to me, but I still feel a bit unsure about going home for the night times. Although, not really sure why now, because I have the same pain medication at home as they have here so in a way, it would just be nicer to be at home. The only difference is that I have a buzzer at my disposal, so if I need anything during the night I can buzz and a nurse will appear with a mini torch box of magic medical tricks! Not sure whether Ed is willing to don a nurses uniform and swap his tool box for a medical kit.

I told Femke my worries about all the medications being changed so often, and it feels to me, like we are not giving anything enough time to work. Also, if there is some improvement, how do we know what that can be attributed to? She saw my point so we agreed not to change anything at all this weekend and then reassess on Monday.

So I had my day-release pass again for the weekend, so when we had seen Femke, we went home. Di dropped round for a while and we had a bit of lunch, then she left and it was about 15.00 so I had a nap on the sofa then next thing I know it was time for a bath! I do miss that in the hospital!

I was going to walk round to the supermarket with Ed after my nap, but I didn’t feel steady enough, feeling dizzy with the meds and still quite tired, so annoying. Anyway, he went to the supermarket while I had my bath. We had a nice dinner at home.. fresh salad, nothing overcooked and nothing boiled to be seen! Then around 21.00 we came back to the institution, the nurse who looks like she should be/have been a nun was on my night shift. She’s lovely, got long grey wiry hair which is mostly kept under control in plaits but there are often strands straying out and she has the air of a nun, but one with a sense of humour! We had a chat with her, I shared some of my chocolate with her and in return, she gave me an injection in my tummy! It’s something to prevent thrombosis if you are lying down a lot of the day. Not a particularly fair swap I have to say, but anyway, she had swooped in and done it before I had even noticed : a stealthy nun.

Sunday 2nd July

I utilised my other day-release pass and Ed came to pick me up around 11.30. I had decided I wanted to try going to another church service, but this time one in English and not in the hospital. Esther knew of a church offering English services so we went together on Sunday. It is a Catholic service so quite different to what I am used to, and I found it quite strict in terms of the order of service, and what the congregation have to do and say at certain times. However, the priest was really nice and the sermon was upbeat and talking about relevant topics, it’s just a shame the sermon was only about 10% of the service. We escaped after an hour when they started queuing up for the communion and that was long enough. I think I will go again, I did like the sermon and I was surprised at how busy it was which also gives it a more lively atmosphere.

I wonder if I am being a cliché; going to church when I think about dying and hoping that God will help me. Well, I suppose I am, but to be honest, I am starting to feel that I need all the help I can get. If I start thinking like this, then I also ask the question, why has God given me cancer? What did I do to deserve this?

Ed picked me up from Church and we went home and had lunch..my appetite is definitely coming back, especially when I am not eating in the hospital! So had a big lunch, after which I thought I would have a short nap on the sofa, but that turned out to be about a 3-hour sleep! We decided to go out for dinner and then Ed would take me back. It was really nice to be in a restaurant, almost doing normal things, still not normal that I am not drinking alcohol! Oh well, it was still a really nice meal and it had flavour!

Monday 3rd July

So without changing my medication, things still improved slightly, nothing significant maybe, but also it hasn’t got worse. Femke came by in the afternoon to discuss options for radiotherapy. The appointment still hasn’t been set up so we still need to be patient with that. She was talking about trying to get me to be at home as much as possible now……she didn’t use the quality over quantity phrase but it was hanging there in the air. Shit. Is she thinking the end is near? That did scare me, until now, she has been quite positive but there was something in her look yesterday that made me think that I might not have long left. Fucking hell. Of course having thought about it logically afterwards, I didn't look great yesterday, I was in bed, working hard to keep my eyes open. She just caught me at a low point which didn't help.

I did have a good old sob when she had left the room, we were both crying. But like Ed said, we have to hope that immunotherapy will work.

I went on the Inspire website that night and there was a thread about Nivolumab (the immunotherapy drug I am getting) and it was definitely inspiring. Some people talking about their tumours shrinking by 70% and 80%! People who have been on the treatment for well over 18 months and also with very few side effects, or mild one like having a dry mouth or some dry skin. Wow, I am now inspired and will try to keep focusing on that.