Monday 19th June
Phew, steamy weather again today, think it’s getting even warmer this week… actually it’s not too bad being in here because it’s quite a good temperature, not so air conditioned that you need your winter jumper when you enter the building, but you can tell they have some sort of climate control because you’re not sweating buckets either. I don’t mean that I would rather be in here than at home of course, give me my own bed, and waking up with a sweaty neck and my fringe slapped down to my forehead in an attractive way, any day!
Gosh, had one of the worst nights, pain wise, last night. I think I hit number 12 on the 10-point scale. It was horrendous. I had to keep calling the nurse and they came each time, I had nose spray, tablets, and sleeping tablets. She even gave me a morphine shot when the short working tablets didn’t seem to be kicking in. Gosh, it’s draining, no wonder I was feeling a bit useless.
Femke is really on the case and wants to get started with immunotherapy asap… god bless her! She came by in the afternoon, and the results of the biopsy were in! It was much earlier than expected, we had an appointment set up for Thursday to get the results. Well anyway, there are no new mutations which means it’s immunotherapy.. no TKI (targeted therapies) are applicable and immunotherapy is the most suitable option. I have to say, I am relieved because it means that it will be given in Utrecht and so will only have contact with Femke, Nanny and all the nurses here. I feel so comfortable with all of them, I almost love them to a certain degree! Well, when I am in hospital they are my carers and like my mum (even though half of them are significantly younger than I am!) so I think it’s normal to feel some kind of affection. They are all so nice, and some of them are quite funny – both of the boys are: Wilbert and Rene, Wilbert is a quiet type with a really dry sense of humour and Rene is larger than life, a big gentle giant. He often comes in and starts with a cheesy phrase in English. The other day I was having an emotional leaking moment, he came in and said “Got a fly in your eye?”.. just what I needed to make me laugh and take my mind off things.
I spoke to Caela via Skype in the morning and I was telling her about my latest mum dilemma (there’s always one). When mum sends texts they are often quite gushy and emotional, kind of the exact opposite of what she is like in real life. That sounds harsh,I don't mean it to sound like she’s a robot, but she obviously finds it much easier to express her feelings in writing than in person. I find that hard and it comes across as being quite clingy and sometimes a bit sanctimonious; she says I don’t need to reply, just knowing I am ok is enough. However, I did feel guilty that I wasn’t speaking to her as often, or Skyping her the same as I Skype Caela.
There are two issues, firstly when I Skype Caela we are just doing our normal thing; Skype is on and we are chatting as if we were both in the same room (which incidentally I do now even when we are not on Skype; due to my methadone/Lyrica combo, my mini hallucinations continue!) whereas with mum it is more formal and like a proper phone call. The second issue is my mum’s partner – they have Skype set up on their laptop which is in ‘their’ study, in other words, his study, so if I Skype now, he sets it up (not sure whether my mum knows how to do it) and then he sits in the main chair and my mum seems to be perching in the background on some kind of poof or stool which is at a lower level than the chair; it would be comical, if it weren’t annoying! I think my body language and, or facial expressions must have given it away because at certain points and he gradually moves sideways and into the background, eventually last time, he actually left the room! It’s not that I have a huge problem with him being there for a short time, or saying hello to him, but I find it annoying if they start having a conversation off-topic between themselves, and when he starts asking me specific questions about irrelevant things like what car park fees are in hospitals here and what kind of taxis are waiting outside hospitals! (he used to be a taxi driver). Well, we did Skype and it was a big improvement, so I hope that is the shape of things to come! Bless her, mum did seem genuinely pleased to see me, I know seeing someone is different to speaking to them on the phone. I think I am repeating myself now…I have the distinct feeling I have typed this before! Oh well..poo poo!
Talking of poo…. it is a common topic of conversation on the ward, I guess on all wards. I know it’s necessary but you would think that when you discuss more personal/private issues, that the volume level could be adjusted. But no, apparently not. What’s worse is the timing; more than once, I have just revealed the delicious offering of the day at 17.00 sharp, when I hear one of the nurses bellowing “And how are your bowel movements today Mr Smit? Diarrhoea? Is it thin? Runny? Sticky? … and a list of other adjectives you never would have come up with! You do learn to block it out, but really, they could be slightly more sensitive sometimes.
Tuesday 20th June
Had a blood test this morning and based on the values of various complicated medical things, (very technical!) they will decide whether I can start immunotherapy or not.
Every Tuesday morning the doctors have ‘the big visit’ on all the wards! It is where all doctors dealing with a patient, go to their bedside and discuss the situation, test results, treatment etc. First of all they gave me the blood tests which were good so that meant immunotherapy could go ahead! In my case I had 5 doctors.. Femke, another lung doctor who I have met several times before and can’t remember her name (rude!) Janneke, the ward doctor, she is quite young and I think she is still in some kind of training but she is the one I have most contact with when I am on the ward and she is lovely, my pain specialist and a representative from the pharmacy. It is quite weird while you are in bed that all these people are surrounding you, looking down at you (physically and intellectually?!) No, I’m sure they are superior intellectually but they don’t make you feel like that, but having such a close-up audience is just something which takes time to become accustomed to. They talked about the pain management medication and were increasing the dose of some medications. I don’t particularly want to have more methadone, as I think that is what is making me have problems focusing when reading or typing. I have regularly spent more than an hour writing one message- it’s either that my fingers keep hitting the wrong button which sends me to an app page, or the settings of predictive text, then I fall asleep and wake up with a screen of nonsense e.g. lkllllfffppppppppppeeeeeellllllllllllll and before that some actual words, but that have no sense whatsoever. I then blink a few times, sit up straight and get back to it… and promptly fall asleep again! I don’t know whether it is one particular drug or just the combination of all of them. Well, I need them, after having a such a lot of pain during the night.
After the big visit and before lunch, I went for a wander and sat outside on the balcony. While I was sitting there enjoying the change of scenery and fresh air, I got a call from Dr Herder! I had asked Femke to get her to call me a while go and I think she had tried but never got through. It was lovely to hear from her and she was asking how it was going, how I was feeling etc. and told her that I was starting immunotherapy on Wednesday. She was really positive and said that it had a good chance of success because of the high level or protein in the tumour, which apparently is an indicator of how well the therapy will respond. Well, if she is positive, then so am I! It was a really nice call and she said I can always call her back, or contact Femke and get her to call me again.
Ed and I had the informative discussion (informal chat with nurse!) about immunotherapy, what it involves and the most common side-effects etc. It was billed as ‘information discussion’ when in fact, it was my lovely nurse, Elise, coming in to my room, briefly explaining what to expect.
After that we went home for a few hours again which was nice. Didn’t do a lot, except have some nice food, enjoy the nice weather and relax in the garden.
Wednesday 21st June
Crikey, quite a busy day! I had immunotherapy and a few visitors.
They hooked me up around 14.30 and Ed came to keep my company while I was on the drip. It went really quickly, it only take an hour in total, and you don’t need to have hours of rinsing either so you are done within 1.5 hours. Easy.
Had a lovely day with 'slots' for visitors - first, of course, my lovely hubby, then Marieke popped in to brighten my day with tales of HU meetings and 'team days' - I wonder who came up with the concept of 'the team day' in the first place. Whoever it was I'm sure they would be turning in their grave now (or shuddering as they sip their premium, craft G&T) about what these events have morphed into. I am sure many of them will still have the original essence of team days: shepherding the team together to a safe environment, with a view to enhancing performance, deal with conflict resolution, kick start collaboration when trust is at stake, and blah, blah, blah, some more management speak rubbish! Well Marieke had positive and negative stories to share so that was good.
Marieke went on her way and then Di and Esther arrived bearing gifts of joy, i.e. food and drink! It was a picnic special! So we went to the balcony on our floor which is open to everyone but never seems busy. It was a perfect temperature, it was a bit later and this terrace is always in the shade anyway which makes a difference. The girls had thought of, and brought, everything, table cloth (which was actually a picnic blanket but multipurposed) wine glasses, cutlery, dessert… etc. it was perfect. There was one other table occupied when we went out and maybe someone else came out while we were there but I didn’t pay too much attention to be honest. We had been out there for maybe just over an hour and were quite full and winding down, when a security guard (and his young side-kick) slid the patio door open. At first, he said it looked like fun and asked if he could join, then asked what we were drinking… and was it alcohol. We said yes, even though I actually wasn’t but anyway, and he said that it wasn’t allowed on hospital premises. He was really nice about it, said it was the rule and he was obliged to tell us, he didn’t remove us from the balcony or confiscate the booze ( Di and Es may have tackled him for that!) but suggested that we finish up and remember for future reference that booze isn’t welcome! He was really nice about it and it wasn’t a big deal, but I’m pretty sure that someone had alerted him to the shocking illegal activity taking place on the 5th floor, because we hadn’t seen him wandering around and I have never seen security guards anywhere except downstairs near reception. Why would anyone do that? We weren’t being noisy or disruptive, maybe it was the combination of being a foreigner and booze.. they associate English people and alcohol with violence and offensive behaviour. Yes, I can see that is definitely true in some cases. But did we really look like the type to be starting a riot? I’m still stunned at that. Why go out of your way to report something that doesn’t have any effect on you?
It got to about 20.15 and I could feel my eyes drooping and my head doing the nodding dog thing. It’s so embarrassing, I am trying to have a conversation, and my eyes keep closing, but I physically can’t stop it, so just have to own up and give in. So the ladies packed up and left. Such a nice evening. I got back to my room just in time for the final trolley round for drinks and snacks, I ordered a cup of tea but didn’t drink it, I was in bed and out for the count almost immediately!
Thursday 22nd June
Whoop-whoop! Slept almost all the way through the night, only woke up once to have nose spray pain killer, pop to the loo and then went straight back to sleep. The next thing I know the lovely breakfast trolley lady knocked on the door gently and came over to give my shoulder a gentle shake to wake me up “Cup of tea sleepy head?”… hang on. No that isn’t how it went at all. I was woken up when the door burst open and the lady who smokes approximately 4 packs of fags a day shouted “Breakfast, what do you want?”… I hesitated partly due to the fact that I was still waking up and partly because I wasn’t quite sure whether she was talking to me or the people on the street outside. Honestly, she would be the perfect candidate to work on a market stall selling vegetables, she is lovely.. I am going to use those phrases again “heart of gold” and “a bit rough around the edges”!
After such a good night’s sleep, I was gutted to find out that I wasn’t able to be released. Around lunchtime I noticed that my right leg and foot in particular were really swollen, looking quite puffy compared to the other one, and the lower leg was also quite painful. The nurse got the doctor to come and take a look and she didn’t like the look of it. She got her tape measure out and tried to measure it.. it took a couple of attempts, bless her. She didn’t say what the difference was between the two legs, not that it matters, I can see that one is fat and puffy and the other is really fat and puffy! The back of my right leg was also aching and the skin felt really tight. They were concerned that it could be thrombosis so wanted to get an scan done straight away to establish what it was.
Kate, from TSM, came in to visit me while this was all going on so that was nice for her, sorry Kate! It was really great to see her though, nice to catch up over an ice-cream! Something a bit decadent about eating ice-cream in bed… made slightly less attractive by a doctor examining my piggy leg.
When Kate had left, two volunteer hospital porters came to wheel me down to radiology to have my scan. It’s really good, all the people who transport patients around in beds and wheel chairs, plus the people who go around serving tea and coffee to people in the waiting rooms in the outpatient clinics are volunteers. Most of them work two half days per week and are usually retired. What a lovely thing to do in your retirement. They get to chat to people all day and if you are really nosy, you get to hear lots of interesting stories. So, my volunteer gentlemen wheeled me down to radiology and I was shipped straight in. The scan was the same as you have when are pregnant and you have that gel on your skin and they go over the whole area – she went from my groin, right down to my ankle and said there was no thrombosis… which is good news. But that means they don’t know what it is. I’m getting a bit fed up of all this, I feel like I am getting side effects of side-effects. Well anyway, can’t do anything about it, the doctors were relieved it wasn’t thrombosis but are still slightly concerned about it.
I didn’t get to use my ‘get out of jail free’ card today, Ed was working all day in Haarlem so he came in to see me in the evening instead. When he left, I walked him down to the car park. They still don’t know what the cause of the swelling is, it could be combination of heat, sitting/lying down too much, so I want to at least try to get a bit of exercise each day, even if it’s just a bit of walking. It is painful, but I can do it and hopefully it will help, and get easier every day.
Friday 23rd June
So finally, the day arrived, I was allowed to go home. The ward doctor came around and said the team were happy for me to go home but that I had to keep a close eye on the leg situation and call as soon as there was any change.
Ingrid was my final visitor and she was there when the lunch came and when the pharmacy lady came up to check which medication I needed and what I already had at home. We went through the list and there was one thing they needed to order, so she just said “You know what, we’ll just get everything delivered to you this evening.” What an incredible service. I’m still in shock that they do that.
I got my appointment card, blood test forms, paperwork etc. then finally got released and left the building around 15.00 and was home before 15.30. It was so lovely to be home, all my own stuff, different clothes, different scenery and no weirdos wandering around! I had a good look at the abundant garden, everything is growing really well… I suppose some might call it overgrown, but I would just call it a bit wild and unrestricted! I do like it and love that it’s got lots of green and colour as well.
Another cause for celebration was the fact I could choose my own food, and all of the choices were nice, and I could eat when I wanted, and it wasn’t at 17.00!
After unpacking and sorting out my stuff, it was time for a bath! That is one thing missing in the hospital … maybe a suggestion box entry?! Anyway, I had a lovely bath which of course I fell asleep in, and when I woke up, not only had Ed done the shopping, but he had also cooked it! What a star he is.
I watched some TV and had intended to have an early night but spent most of my time sending WhatsApp messages; I was interrupted by the arrival of our little hedgehog! He comes back every year.. maybe he is not the same one, but I like to think he is. It’s so fascinating and funny to watch him, because he snuffles around on the grass then goes to the edge and has a drink from the plastic tray we have left out, then he disappears into the green abundance of our border (that is one of the reasons we keep it a bit wild!) and you can hear him getting progressively closer to the terrace, he appears under the table and starts looking for food. We had put some crumbled up cereal or something down so he went for that, and he eats really loudly, it’s hilarious watching and listening to him. If something spooks him, he speeds off to the back of the garden… he looks as if he would be a really slow mover, but when he needs to be, he’s super speedy! Well, I must have watched him for about half an hour on and off, he kept coming and going, he is so cute.
Went to bed, in my own bed, really not sure how I would sleep but just happy to be at home!