R is for Really?! and Resolve and Reality

It's been a hard few days and I am still trying to build my emotional and physical energy back up. After a good night's sleep I have regained my resolve, added a modest dose of reality and am ready to face whatever this horrid disease is going to throw at me next.

Just before I went to England I started having pain in my lower back, near my right hip, where I have had radiotherapy. At first I thought it was from over-zealous activity in the garden, but when it didn't subside after a few days, I realised it was probably the cancer spreading. I didn't want to do anything before going to England so I made an appointment for when I got back. When I was in England I discovered two lumps on the side of my neck, on my glands, it felt like little bumps,like an in-grown hair, that you might get in your arm pit.. to put it bluntly, in sweaty areas! Well, again, being realistic, I guessed it was related, but hoped it wasn't. I didn't panic, but showed caela and after a bit of eye-leakage, we agreed that I needed to call my hospital, tell them and see what they said. If I needed to get an earlier flight, that is what I would do. When I called them they made an appointment for me for when I got back because if I didn't have any other symptoms like fever, shortness of breath, sickness etc. then it could wait until I got home. Relieved, I enjoyed the last few days at home and decided to try and put it to the back of my mind until we had the facts.

Last Thursday I had the appointment with Femke, she felt my lumps (no facetious comments!) and I told her about the pain in my back and any other new aches, pains or oddities that had arisen in the previous few days. She ordered a CT scan and blood test which was scheduled for Monday this week. Although she obviously couldn't say anything for certain without seeing the scan, having felt the lumps, together with the pain in my back, she said it was likely that the cancer was 'active' again. Fuck! Not a surprise, but something you hope you have got wrong. After more leakage, Ed and I talked about it, then decided to focus on enjoying the weekend, we had a party to go to, it was going to be good weather and I was going to meet up with Craig in Amsterdam on Sunday.

I went for the scan on Monday afternoon, went to ward 5B first, which is now all-too familiar and almost feels nice to go back to, to get the needle for my drip inserted... another lovely effect of chemo is that it shrinks your veins so makes it harder and harder to put in needles and take blood. Now, when I need to have a drip put in, usually in my hand/wrist, I have to sit with my hand in a bucket of hot water first to get the veins ready for it. Last time I went for a CT scan, three nurses had a go at putting the needle in and eventually succeeded but not before they had made their mark, literally, in about four different places on both arms. I'm not particularly squeamish about needles or having blood taken, I never was and now even less so because it just happens so often, but I don't want to think about it too long and if they spend too much time digging around for it and are discussing how difficult it is while they are doing it, funnily enough, that doesn't help!

I had the scan at 13.00 and then had the appointment to get the results at 16.00 so had gone prepared.... some IELTS marking, my book, my ipad, food supplies etc. so I was quite happy waiting in the cafe, doing a bit of marking, interspersed with people watching. A hospital is quite a good place for that if your mind isn't preoccupied with other things. First of all, when there is more than one person, you need to identify the patient (a leg in a cast, or eye-patch disqualifies you from this game!) Having said that, if anyone had seen me and Ed at the hospital lately, with the hernia in his back, they would have thought he was the patient. Anyway, once the patient has been identified, you try to guess why they are there and if it's something serious. I sometimes wonder if people can 'see' my illness.

Ed came to meet me for the appointment, we were both nervous before going in and unfortunately the news wasn't a surprise. The tumor in my left lung has grown again, there are more smaller tumors and they have increased but the focus was on the main one. Before treatment, it was about 68 mm and after the last chemo it was 34 mm and now it's gone back to 46 mm ( roughly, I forget the exact numbers). They also saw evidence of cancer in my lower back, where I have the pain, but also in some places in my pelvic bone and lower back, where I don't have any pain.. these are all tiny spots. They couldn't see exactly what the lumps in my neck are, because they are too small, but we are just assuming they are also tumors. Ok, like I said, shit, but no surprise so the shock element wasn't there this time. Femke was sympathetic, she said she has been in touch with the professor in Erasmus Medical Centre in Rotterdam, who had said he might have a treatment suitable for my mutation, and is sending all my scans and information to him and setting up an appointment. The big question we had at that point was about our holiday next week. Fuck, is this going to be the same as the weekend away in Zeeland.. (and I don't mean worrying about the weather being crap!) and buggered up because of my health? Her main concern was about pain management. I had told her that the anti-depressant pain killer wasn't an option for me because I felt so groggy the following day. She recommended another one, Oxycodon, which I have a stock-pile of in my very own pharmacy cupboard so I have started taking that instead.

In addition to the tumor-news, the blood tests showed that my HB level was low again and my liver function was not good. Because of that she had got a bed for me and I had to stay in overnight on Monday to get a bag of blood and to be on a saline drip to flush me out! I was sent to a different ward because ward 5 didn't have enough space so I went there. It was a real bugger that I hadn't known earlier, because I would have left the needle for the drip in after the scan. I told the nurses it was often hard to get a needle in, but three different nurses had a go, all believing they had the expertise to do it; I'm not doubting their ability, but the nurses in ward 5 are used to chemo patients with their pathetic, uncompliant veins. It was a painful experience.. not just physically, but just listening to them. If I had been in a more light-hearted mood it would have been funny. The first nurse was showing a less-experienced nurse how (not) to do it, as it turned out! She said they had better call Wilma. Wilma came and was quite confident, but she was the worst because of the running commentary! "You have a nice thick vein but it's difficult to catch, he keeps slipping away"... really?! I don't need the details, just do it or not and I'd rather you ask me if I'm going anywhere nice on my holidays in a hair-dresser style! She wanted to have another go, but I protested and she said she would call 'the assistent on call'... mmmm, that didn't give me much confidence. Anyway, he came about half an hour later, so with three extra holes and swollen bruises, he came to have a go. He made two attempts and was about to try the third when I just said I wanted to go up to ward 5 to see if they could do it for me. I said it wasn't personal and he was fine about it, though he clearly didn't believe they would be able to do it, because he said "no, you can try and they will probably end up calling me anyway"... cocky!.. Well, I walked up to my trusty ward 5, Ed had come back with my overnight bag by that time, so he came up with me. I had one of the nurses I had seen before and she wrapped my arm in an electric blanket, gave me a cup of tea and left me for 15 minutes to warm up and then when she came back got the bugger in within about 20 seconds! Phew!...another lesson learnt: don't trust any other department to put a needle in for a drip!

When I 'checked-in' to the ward at 17.00 I was just in time for dinner... mm, lucky. The offering was boiled potatoes, some brown meat in gloopy gravy and creamed spinach... not three of my favourite things. Ed had a go at it, so I ordered some krentebollen met kaas from Ed! (that translates as teacakes with cheese and I know it sounds weird but actually it's a good combination; sometimes the Dutch get it right. I'm still not convinced about the chocolate hundreds and thousands on a slice of bread for breakfast though!) After 'dinner'.... is it dinner if it's served at 17.00?! and the needle/drip episode I got hooked up to the bag of saline and my blood bag arrived around 21.30. I watched a bit of TV and continued the sending of updates to friends and family. Not nice to have to tell people via WhatsApp but I wasn't up for speaking to many people. I only actually spoke to Caela via Skype and everyone else was via message.

I slept ok until about 4 a.m. when I woke up and was basically awake on an off then til about 6.30 a.m. - I listened to some music, danced to 'Years and Years'... as I was dancing (in my private room I hasten to add... not sure I would have done that in a shared ward!) I was thinking about the scene in 'Love Actually' when Hugh Grant is dancing in 10 Downing Street and gets discovered by his housekeeper! I was vaguely keeping an eye out for the nurse's torch advancing in the hallway; I didn't get found out.... at least if anyone saw me, I didn't see them, so was blissfully dancing away, thinking I was really cool, when in fact I'm a woman with a puffy face, bed-head hair, in my pyjamas dancing like a person in their forties! I may not be a parent (or a man!) but I fear it was the equivalent of dad-dancing! Oh well, that is on my list of things I don't need to worry about, just feel happy that I am still able to dance, however badly!

So in addition to the dancing, my small-hours activities included writing an introduction for a crowdfunding campaign. I have been looking at a private clinic in Germany and another in Switzerland which both offer alternative treatments for cancer. I am not certain of anything yet, but I am not ruling out any options and if that means trying something which might not be offered here, then I will consider it. The obvious issue is cost, hence the need for crowdfunding. I need to investigate further but it is something I think I will try and set up in the next few days. What have I got to lose?

I finally got released yesterday afternoon around 17.00. Had to have more blood tests and a urine test. My kidney function had improved slightly but they are still concerned about it and don't know exactly why it is low. Normally it is caused by chemo, but since my last chemo was 24th February that is quite a long time ago. I always drink lots of water so that isn't the issue. I have also noticed that my ankles, fingers, neck, eyes and face in general are also a bit puffy (didn't someone mention that I had a fat face!?) lately and they don't know why that is either. Well, the tests didn't reveal anything serious so they released me and I have to go back on Friday to get my blood tested again, in preparation for the holiday.

We have got the date for the appointment in Rotterdam: next Monday afternoon, it's great that they can fit us in so quickly and before our holiday. I hope they can come up with a treatment plan. In the meantime I have to focus on keeping fit and healthy so my body is strong enough to handle whatever treatment they want to throw at me. This means I am going back to the low sugar/no refined sugar diet. I know it will be hard, but I think there must be health benefits in it, for everyone not just cancer sufferers. It gives me a little bit of control as well, managing what I put in my body and trying to make sure I keep as active as I can. So, time for a spinach & fruit breakfast smoothie...