T is for Taste of Freedom

Friday 7th July

I slept relatively well, and was up around 06.00 so got up around 6.45 to have a shower so I would be ready, packed, breakfasted, blood taken, medication taken etc. all before 8.55am when I had an appointment to have an x-ray.

Well, on my side, all was done, but the transport man was a bit late so I was impatiently tutting as he wheeled in! Made it downstairs in no time, because I am an in-patient, you get different entrances and exits and don’t have the same queues, so there was no dealing with a snooty receptionist who took great pleasure in telling you loudly and in her most patronising tone that you are late! Bonus!

Had my x-ray done in no time, then wheeled round to the lung clinic where I was supposed to have an appointment with Femke. It had been made before I came into hospital and since I had been seen numerous times a day for over a week I had assumed it wouldn’t be necessary anymore but when I checked the day before, they didn’t want to cancel an existing date so I just left it. Anyway, within about 5 mins of being there I heard the receptionist speaking to Femke saying that she would tell me… i.e. there was no appointment!

Ok, back to the ward and now wait for the results of the blood test to see if I need platelets or not – my blood is not clotting as quickly as it should so this test would determine if I needed to bag up again, this time to a dirty-yellow bag instead of a Merlot-red bag! (which one sounds more appealing?!). The ward doctor came round almost as soon as we got back, and said I did need them and she was going to order them. I had already explained that I had my second radiotherapy session at 15.30 that afternoon so needed to be done, checked out, and have picked up all my medication before 15.00 really. Time was looking tight! Luckily platelets only take 45 mins to go in, so much faster than your traditional meal; this was a take-away snack, whereas blood requires more refined dining.

After the doctor had been in, I started getting my stuff together, then fell asleep (surprise) and woke up at midday!

Ed was under orders to be there by 14.30 so we had time to get my drugs and leave and get to UMC on time. We checked out, quite an understated affair actually considering I had been in for over a week. However, it is sad but true that I will be back again (later rather than sooner hopefully) and will see all the staff fairly regularly for my treatment. There were only a few bits of paperwork for me and the prescription for my significant drugs haul had been sent down to the pharmacy ahead. So as we hobbled quickly for the exit, I felt a small sense of elation. This was soon drowned out when we were in the car, by having to deal with directions and our (old) sat navigation system not recognising new roads! But we got there in the end, actually only about 6 mins late which is quite impressive considering the fact that we had been in the centre of the city with some very serious frowning and swearing going on at about 15.25. Always nice when you have to rush against the clock on one of the warmest, sweatiest days of the year!

The radiotherapy was ok, still a bit painful because I had to lie on the same spot again, but it’s for such a short time, that you just bite your tongue and suck it up. So I did.

Got home and it was so lovely to be back…. I just unpacked and wandered around upstairs… slowly getting used to being in my own environment again. Then ….the moment of truth.. the moment I had been waiting for and one which elicited a genuine groan of joy…. a bath! I fell asleep in it, got out sweating and dozy, it was amazing.

Had decent food at a normal time (not 17.30) and watched a bit of TV and then had an early night, hoping that I would have a good night.

Bunion update: It is still there! Beginning to live an independent life apparently, there is definite growth and movement from the general nose area to the right hand nostril. Mmmm, still quite fascinated although it is quite painful to touch so think fascination will soon give way to exasperation and (forced) elimination!... might be painful!

Only 1 sleep until Caela is here!!!

Saturday 8th July

Caela is here!!! Yes, safely arrived in the lowlands and it’s so great to have her here; when I realised I couldn’t go home, I was so gutted about seeing everyone, but especially Caela, so it’s amazing that she could come.

When we had picked Caela up from Schiphol we went to Haarlem. I really like it there and have been there quite a few times on shopping trips and feel like I’ve banged on about it enough to Caela. so thought it would be nice to take her there. It’s not far from Schiphol so within an hour we were sitting on a terrace soaking up the lovely weather and atmosphere. We didn’t stray too far from the car park because my walking ability is still a bit limited at the moment. It was so nice though, just wandering, being out in the community and doing ‘normal’ things. Ordering drinks from a young, attractive waitress in a bar, instead of from an older lady in a tabard with a trolley! We had a look in a couple of shops, then went to a cafe and sat outside for lunch – again, the novelty of having more than two choices on a menu, and further novelty of all of the options sounding tasty. The difficulty of choice stemming from the fact that there are more than two or three things that I would eat, rather than choosing the least unappetising of two options… actually not wanting either.

So we had a couple of hours in Haarlem then drove home. I just keep saying that I can’t believe how good I feel! It’s hard to believe that I was in hospital yesterday because I just feel so much better, obviously still have my huge collection of drugs to take morning and evening but if that enables me to function at some level of normality at home, then hurray and bring it on!

Carbuncle cover-up: the nose attachment is showing little reduction and is still quite sore. Caela tells me it doesn’t look that noticeable but I’m not sure, every time I look in the mirror (which I actively try to avoid) I just see a comedy ruddy nose prosthesis, an obvious looking one that you would see in a cartoon! Interesting developments then!

Sunday 9th July

I can’t believe the difference in my sleeping as well; I woke up at about 6.15 for the first time! I didn’t wake up at all to take any pain medication! It must be weeks since that has happened, that is amazing, it makes such a huge difference to how you feel, not least because you are less tired, but just the fact that you have less pain – incredible. So I got up early, but didn’t mind that and started catching up on my blog and enjoying having a look at my garden in the morning sunshine. It is all looking very healthy… if a bit thirsty!

We had a lazy morning of chatting and catching up, well, when I say lazy I am referring to myself of course, because I don’t have any problem sitting doing nothing (lots of practice over the last few months) but when it comes to Caela she always has to be doing something. And today’s choice of activity was cutting out, I had collected my magazines and saved images that she might be able to use so Caela was busy snipping and I was ‘busy’ listening and chatting and enjoying being there!

Ed chauffeur drove us in to Utrecht for few hours in the afternoon, we went for lunch and did some people watching (always a good activity in Utrecht because it is so busy). Because I had to cancel my trip home this time and because my state seems less stable at the moment, we have also decided to cancel our trip home in August and our trip to Brighton. Again, something else I was really looking forward to, but hey, once again, it’s not the end of the world, we can deal with it. So, in our ever increasingly resilient state we have changed our August plans. Instead of us going there, Caela and Grant and the kids are coming here! Fantastic! It’s a shame about Brighton, but who cares, we can do that another time, it’s just about seeing each other and we always have a fab time together in Utrecht. The kids are so easy, they love cycling, going to the parks, eating out, playing, wandering, going swimming etc. so that can all be arranged. The only difference now is that we have been debating whether it is realistic and a good idea that they stay with us, like they normally do. It’s actually for two reasons, the kids are growing up fast (odd, I know!) and because I am so weakly and pathetic, our house is quite small for 6 adult size people for 4 or 5 days! So we have been looking at different options, Airbnb, hotels, hostel, bed and breakfast etc. With that in mind, we went to have a look around the StayOk hostel in Utrecht. It’s been there about a year, really central location but I had never been in. It is really nice, big open spaces, decent sized rooms and very friendly staff. The only thing is that there Is actually not much difference in price to a hotel, so it’s not a cheap option really.

Then, I had a lightbulb moment… Di, Bernd and Matias will be on holiday in August and their house will be empty so …. could that be an option. Of course, that is a huge thing to ask of someone, but knowing Di and Bernd and their bottomless pit of generosity I knew that I could ask the question anyway. And, of course, they said yes! How amazingly, wonderfully generous and kind is that? So, that is sorted, and even more of a bonus for Hattie and Archie, Di and Bernd live a few mins bike ride from one of their favourite parks!

I had an overwhelming surrealistic feeling as I was standing in the queue to pay in a shop: this time two days ago I was lying in my hospital bed, being looked after, only straying as far as the ground floor café for an ice-cream. Now I am in a busy shop in Utrecht, wandering around with other normal people. The juxtaposition is just so stark…if you look close enough, you will see that I look sickly, bony, still with the marks in my arms and hands where I have had IV or needles in, but at a glance I’m just your average shopper. I suppose that goes for everyone though, delve a bit deeper than the make-up, the clothes and you will find some surprising experiences.

Comedy nose update: It’s still there! I can’t stop touching it (yes, that means I am picking at my nose!) and I’m certain that I should be leaving it, but it feels really hard and like it needs to be extracted. (that is what I am telling myself at least).

Monday 10th July

Another good night’s sleep!

I had to go in and get blood taken to check how my levels were looking after immunotherapy and the transfusion on Friday. Ed drove me and waited outside, again I was surprised by the efficiency .. was in and out within about 10 mins. Expected to get a call from Femke late afternoon with the results, but she called me about an hour later! It’s good news. The levels in blood are all slightly up which is good and which means I don’t need another transfusion at the moment. The tumour markers in my blood which we haven’t discussed for quite a long time now, since before Afatininb I think, had increased massively.. which was obvious because we knew that the tumours had grown, well they had gone up to 1400 something or other and this figure had dropped slightly. It’s not really about how much it had dropped, but more the fact that they are decreasing, which is a really good indication that the immunotherapy is doing something! Femke was just really happy to hear that I am feeling better and when I told her what I had done over the last couple of days she was really surprised and impressed. She also referred to the x-ray I had had done on Friday morning, the official comment was ‘unchanged’ but unofficially, to me, she said she thought she could see very small signs of reduction, but it’s hard to see in an x-ray anyway. I ‘m not stupid, I know it will take time and won’t disappear overnight, or ever actually, but it can significantly reduce and that is the result I’m going for!

So, we were all feeling quite buoyed up by the results and just the fact that I am still up for doing things and not needing a sleep. I had my 3rd radiotherapy session at 14.00 so we all went and Caela was able to see the UMC. Not exciting I know, but it’s nice when you are talking to people on the phone, that you can at least kind of picture where they are, I guess it helps a bit when you are far away. So after I had been prodded, pushed, shifted, edged, lifted, rocked, and moved about on the table, then zapped, we were free to go. We drove to a pancake house in Bunnik, which is really picturesque, in the forest and with a huge garden which runs down to a river. It was still gorgeous weather so we sat there and had some cake.. possibly the largest slice of apple cake I have seen for some time.. and I even managed to polish off about 90% of it! The pancake house is set near the grounds of a fort and there is a lot forest and some nice walking routes around it. As we had forgotten our sensible matching zip off trousers and grey/green walking boots, we decided that we would, unfortunately, have to forego a long walk, so we did a short wander along the fruit trees and the tennis courts and then went back to the car.

Carbuncle status: I managed to camouflage it slightly today with some foundation, it hurts to apply but it does reduce the beacon-like appearance. I think it is going down slowly but too slowly for my liking. Think I am going to take it to my GP for him to have a look at!