P is for Progression

So we've had some good news this week. I had an appointment with the stand-in for my own doctor, I had met her before when I was in hospital before Christmas, and she is really good. Well, I knew in advance that I wouldn't be continuing with the type of chemotherapy I was on because of the horrendous side-effects. She impressed upon us how severe the reaction had been and that they had never seen such a bad reaction before which is why they wanted me to stop immediately as they are concerned what damage it would do if we continued. Ok, so that's clear and I completely agree with that decision! I'm relieved that I don't have to have more chemotherapy: no more nausea, no more skin issues, no more dips in blood levels, more energy, no more worry about thinning hair, hopefully no more strange yellow-tinge to my skin, more predictable days. I know I still have cancer so I will be more tired than pre-cancer days but at least I am not pumping toxins into my body anymore. The effect of the chemo will stay in my system for a bit longer anyway. My next maintenance chemo was scheduled for yesterday so I'm still really in the cycle and I knew I wasn't going to have any before our holiday in Tenerife so for the time being nothing will have changed.

More really good new is that my blood levels are improving so I can swim and go to the gym and be let loose amongst the general public again (mixed feelings about that as well!) Of course it is nice to have the choice of going out or not, but partly because of the (lack of) strength in my voice I am much more aware of noise levels in places now and a lot of bars and restaurants have really crap acoustics and are really noisy so it's actually nicer to meet either at a quiet time of day, or in a quieter place or at someone's house.

So why am I not feeling on top of the world with this news? Well, I guess it was a misunderstanding on my part about the course of treatment I would be getting - I don't know if this was something lost in translation, or simply lost in the abundance of information we were given at the beginning of this whole process. Either way, I was under the impression that chemotherapy was 'the first line' treatment, and when this became ineffective (i.e. wasn't killing the cancer) or the side-effects became so bad that my it was no longer manageable in terms of quality of life then this would stop and we would move to ' the second line' treatment. Well, what is actually happening is that we have got to the end of the first line and now I am just not going to have any treatment until the point of 'progression'. Not being a medical professional, (though I my expertise in some areas is improving!) in my vocabulary the word family 'progress' has always had a positive meaning. Well, in this case it definitely doesn't. What they mean is when the cancer starts growing again, then we will move to the next type of treatment. I will be monitored with CT scans and blood tests every 6 - 8 weeks and when they see that the tumor is growing, or I get physical symptoms that indicate the same, we will look at available treatments. In my logical, objective stance, I can see that it kind of makes sense: first of all, if they start another treatment now they won't be able to identify what is the cause of any effect on cancer... is it still the chemo or the new treatment? They need to wait long enough for chemo to be out of my system and the way they identify that is when something changes in the tumor. In addition, they are in contact with the cancer specialist hospital in Amsterdam where new drugs are being trialled and the longer we wait for that, the more they know about the effectivity of that drug and the side-effects, so from that point of view it makes sense to wait as long as possible. However, in my non-objective, emotional, personal, individual, child-like, vulnerable self I feel that I am a by-stander, doing nothing whilst my body deteriorates.

We had the appointment on Wednesday and Edgar was quite positive about the news (great that my blood work is better) the cancer cell count in my blood has also dropped again, obviously good but like I have said before, it isn't a really strong indicator of what the tumor is doing, and the fact that I don't have to go through chemo again. I know it must be heart-breaking to watch me go through it and not be able to do anything. When we were in Zealand camping in our room, he was upset at watching me rushing to the bathroom, searching for the energy to get in and out of bed and generally looking sickly, pathetic, spotty and tired. So of course the option of not having that is great, I am not denying that, but I had misunderstood the timeline and Ed hadn't. Initially I was holding back the tears in the doctors office and then I had to go up to the day treatment ward (where I go for chemo) for a vitamin injection. All the nurses know the patients now, so I had a chat with a couple of them and told them about the news and they got it; they understood my relief at no more chemo, but they also know what that means and I could see their appreciation of my situation.. which made me well up even more! FFS. Deep breath, it is what it is, no more, no less. So moving on again, I've had time to digest the news now and I'm ok with it. We have decided to speak to Dr Herder, my first doctor who is now in Amersfoort, and ask her opinion. I am guessing she will think the same as her former colleagues but you never know. The doctor we saw on Wednesday also said she was going to speak to the doctors in Amsterdam and confirm they agreed with the plan.

One of my colleagues from The Square Mile has done some research for me (bless her) and come up with some websites with information about lung cancer and treatments; some of them I have seen before but others not, so I need to set aside some time to have a look at those. Another colleague from HU sent me a link to a private clinic in Switzerland which offers some alternative and complementary therapies for cancer and other diseases. Of course that is private so would be expensive but I want to explore the options and see what they are.

In the meantime, I want to enjoy my time without chemo: celebrate my 'healthy' state for going back home, going to Tenerife and the British Council exam sessions and any other work I can get, coming up. Last week when I had the horrid skin rash, I was given a mild steroid which not only cleared up the rash, it also gave me an appetite and a boost - I wasn't sure if it was related to the tablets, but the doctor confirmed that it was and that if I wanted to, I could go on a mild dose for a while to see if it made any difference. I have started taking 5 mg of it, so really low dose, because I want to continue doing stuff. Last week was fantastic weather, warm, dry and sunny so I was out in the garden, out on my bike and relatively busy and the days after I was knackered but when I had been on the steroids, I hadn't had that 'down' time. I am reluctant to be on steroids for ages...although, why not a low dose? but anyway, I am definitely going to do it now for when I go home and for my holiday. I've got friends from home here this weekend, so I have started taking the tablets and had quite a long and busy day yesterday, up quite early cleaning ('the visitor effect!') cycled into town, spent a few hours shopping (and some Euros on purchases!) and wandering then came home and then cycled back into town and out for dinner last night - in my current state that is quite an energetic day. I thought I might feel shattered today, but actually, so far, I feel ok. It could also be a combination of improved blood count and the fact that I am eating more and getting stronger - can't wait to get back into the pool and go to the gym.

So today is another nice day with friends, bit of tourist stuff in Utrecht.. flower markets, normal market, shops and then back here for a walk in the park (rain dependent) and some nice food, drinks, chat and maybe a Netflix offering. They are staying in a hotel in the city, which I do feel incredibly guilty about: having visitors over but not offering them a bed! but to be really honest, it is very nice not having the work that is involved with visitors (sorry girls!).. of course when it's one person it's so much easier because it's only one bed etc. but with two, one person would need to be in the attic and it's two extra beds and two extra people in the house for a few days. Like I said, nothing personal at all, but it is lovely to see people without having to do any work. I think it's also nice for them having a posh hotel right in the city centre - the location is fantastic and it's a pretty cool hotel, I had a nosy when I went to meet them yesterday. Would never normally go into a hotel in Utrecht so it was interesting to see it.

On that note, I need to get my skates on and get dressed ready to go and meet them - looking forward to another lovely day with my lovely ladies.