M is for mood swings

My emotions have been going up and down so much over the last week I feel like I'm slapping myself in the face on the back swing. One minute I have a mini-victory and a mini-high, for example, doing my exam session for The British Council. I never thought I would be so elated about sitting in an uninspiringly decorated room listening to varying levels of English proficiency for several hours, but it was great. Very nice to catch up with colleagues I hadn't seen for nearly a year and be 'entertained' by students' comments. At other points, my emotions have taken a nose-dive and I needed oxygen to keep going. e.g. Saturday evening we had dinner with all the in-laws; it had been ages since we had all been together... probably September or maybe even before. Anyway, Ingrid organised it and it was really nice, apart from the fact that I had stomach problems and couldn't concentrate on the conversations or food and in the end, just wanted to go home. It makes me sad that I have lost the staying power to be somewhere until the end! In reality I might often have been one of the first to leave (I have always loved my bed and am an early bird!) but that was a choice rather than a need imposed on me by physical limitations. When we did get home I was in bed not long after, only I couldn't sleep because I had an excruciating pain in my elbow... (of course) - now I just roll my eyes, another pain, another lump, what next? Can't I get a break for a change? It was so bad that I couldn't straighten my arm or put any weight on it to push myself up. In addition to that, the pain in my lower back has returned. It started quite gradually with a dull ache, as if I had been doing exercise and not done any stretching so my hamstring muscles were too tight, but has got progressively worse over the last few days. As a result of these two new 'issues', getting in and out of bed was quite a challenge, probably quite comical to see, and finding a position comfortable enough to sleep in, was almost impossible.

I'm still not sure what the elbow-episode was, but thankfully it only lasted a couple of days; I wasn't really convinced it was related to the C-word, but you just never know. A likely explanation is that it was caused by me walking home carrying a relatively heavy bag of shopping in the same hand for about half an hour. In my pathetic, weakened state, that constitutes 'overdoing it' and is the only thing I can think of which might explain things.

The weekend was good, great weather and relatively busy, had a lesson, got my hair dyed, did quite a bit of walking, cycling, gardening and met up with friends. My in-laws have bought me a lovely garden chair which reclines so I can relax and read my book in the nice weather... we already had some chairs, but they were just bog standard plastic chairs, not that conducive to extended periods of reading interspersed with naps. Needless to say, it has already had its' fair share of usage and it works well.

The pain in my lower back has been getting worse, and Tuesday night it was so bad that was just tossing and turning in bed, trying to get to sleep...lying down is so uncomfortable; I hadn't taken extra painkillers because I didn't know what tablets I could use with my medication, so Ed, my hero, called the hospital at about 1.30am to ask what was best to take. He then raided my home pharmacy cupboard and gave me the recommended dose which helped, it still didn't cover the pain completely but it was a huge improvement and I got at least 4 hours sleep in total.

Now it's Thursday and I've been awake for about an hour or so .. it's 4.30 a.m. Yesterday (I mean Wednesday) was an interesting, informative, challenging day; after the previous night, I resolved to contact Erasmus and Utrecht again, I had already been in touch on Tuesday to ask about the possibility of more radiotherapy, Femke said she would speak to UMC (where I go to get zapped) and see what they said, but whatever happens, I need to be free of Afatinib 7 days prior to radiotherapy. Before I get zapped, I will need another CT scan and I have one planned for Tuesday in Rotterdam, but that means waiting until Tuesday, deciding if the spot can be zapped... if it's exactly the same spot as before, can they do it again? If they can do it, I need to stop taking the tablets for 7 days so it would be at least a week later, which means it's almost two weeks, so I am looking at two weeks of potentially increasing pain.... (trying to Pansy, but Ruby is dominant at the moment).

Back to Wednesday, after the pain, I woke up early and emailed Femke and Janneke and explained my pain increase, I had already decided to slap on an extra morphine patch - I've been on 12.5 mg since October and at various points, doctors have mentioned/recommended doubling the dose... this is a low dose and you can go up to 150 mg. I have been a bit reluctant to do this because of the side-effects I had when I started: 3 days of horrendous, vomiting and headaches. Not something I would choose for to be honest. Another reason for my reluctance is the fact that it might 'cover up' the aches and pains that I need to be aware of....each new pain might indicate growth, which although unpleasant, needs to be flagged up at the earliest point and if pain is hidden initially, it could be further on in the growth stage by the time it is dealt with. So after months of considering this, I got to the stage where I thought 'fuck it' the time is right, the next 3 days are relatively 'plan-free' - I mean I do have nice things planned, but in the end if I end up having to miss something, it's not the end of the world. Next week I have to go to Rotterdam on Tuesday and have two full days examining on Wednesday and Thursday, then another hospital visit on Friday, so that is definitely not a good time to morphine up.

I got a call from Janneke in the afternoon saying that a lot had been done 'behind the scenes' since my email in the morning; she, Femke and the radiologist had been discussing the best plan in terms of pain, radiotherapy and timing. Because of the bank holiday today, it wasn't possible to get a CT scan earlier in Utrecht or Rotterdam, so I was given two options: wait until Tuesday for my scheduled CT scan and stop taking Afatinib immediately, so that from next Thursday I can have radiotherapy, OR get admitted to hospital in Rotterdam today to monitor my pain relief and to see if they could get me an emergency scan before Tuesday, and still stop taking Afatinib. It didn't take me long to decide... I'm just going to wait until Tuesday; it's going to be the hottest weekend of the year so far, like I said, I have good things planned, and if I go into hospital anywhere, I'd rather be in Utrecht where Ed can pop and visit me more than once a day, instead of Rotterdam which takes about 1.5 hours to get to. Well, I am stopping Afatinib temporarily and keeping fingers crossed. The other thing I forgot to mention is my mini-hunchback: I have found a lump on my right shoulder blade, it is painful to the touch and is, well, just another sigh-inducing development.

We agreed the pain management drug plan for the next few days and I will see them on Tuesday for the blood test, scan, results and discussion with the doctor. Without wishing to be negative, I fear that it's not working... why would I be having more pain and finding new lumps if it was? But maybe it takes a few weeks to take effect. ...

I also received a call from one of the medical team at the Halwang Clinic in Germany yesterday; in a nutshell (uncharacteristic, I know!) they said that administering Afatinib and a form of immunotherapy drug together, would be more effective. Starting immunotherapy before the tumor becomes resistant to Afatinib would increase the effectivity of immunotherapy, which would mean extending the life-time of the Afatanib, and tumor could be reduced to remission stage. Of course, this is simplistic, but it sounds reasonable. Why wouldn't they do this now though, if it was supposed to be that effective? One (significant) aspect could be cost; both drugs are extremely expensive, so prescribing two together might not be approved. Ed and I discussed it and it is certainly worth investigating, both at that clinic, but also here. I want to discuss it with Rotterdam, Utrecht and go back to my beloved Dr Herder in Amersfoort and drill down to see if the root cause is money, because if it is, we have something to work with. The clinic is going to send me a summary of the potential treatment plan and a guide of the fees so we have an idea what we are dealing with. An ideal scenario would be that my doctors here agree it would be a safe and positive option, and we are able to do it here, even if we have to pay for the supplementary therapy ourselves... which I'm sure, still can't be as much as going to be treated in Germany for so many weeks. I still have faith in my doctors here, so would feel much more reassured by their approval and any solution they can come up with which involves remaining at home.

I did manage to sleep ok, and do have a dull ache in my back at the moment, but I was awake predominantly because my brain is racing- so many things to consider and find out more about. How do you make the 'right' decision in a situation where the consequences are critical... actually life changing? It can take me ages to decide what to eat if a menu is too extensive, and I have been known to loiter in shops for extended periods of time dithering about which product to buy... shouting at myself in my head "It's just bloody conditioner, how much difference can it make?!"... so if I'm like that over everyday decisions, you can imagine what it's like when the stakes are higher.

I have one final question: based on the following symptoms: mood swings, self-obsessed, a few spots (along with a bit of flaky skin....attractive!), fussy about food and erring on the side of the unhealthy option e.g. white bread, ice-cream (I know it's got sugar in it!) etc. a 'can't be arsed' approach to quite a few things and over-use of the word 'unfair'.........am I a teenager?!