Q is for Quality of life….. over Quantity?

I’ve heard the phrase ‘Quality of life’ numerous times over the last 6 months, mostly by doctors and always used to mean that quality shouldn’t come at the cost of quantity… and yes, in reference to my life. It must be a mantra used by healthcare professionals dealing with terminal illness – whatever treatment there might be to extend a life, the side-effects of the drugs treating it, must not be worse or more harmful to the patient than the actual disease itself.

Of course, I agree that there is no point being given drugs to cure/stabilise a disease or illness which makes it impossible for you to have any kind of life at all, but what is quality of life? How do you measure it and how do you know when quantity is outweighing quality?

The reason I am focused on this now is because we had the referral appointment at the Erasmus Medical Centre in Rotterdam. We saw a doctor who is not the professor Femke had contacted, but one of his minions! Of course, I am being sarcastic; the professor is obviously a very experienced doctor, but also an academic and is on lots of medical boards and consults with hospitals all over the Netherlands so he has three doctors who see the majority of his patients for him. The doctor we saw, I will call him Dr Petri dish, ( because I can’t remember his real name, I know it began with a P and Petri dish is more memorable and vaguely related!) was very nice, he did seem in a rush to get all the information across and was talking at speeds that he should only be used when you are summarising to people who have the same level of background knowledge as you! i.e. he was talking to us as if we were also doctors who had seen all my records, and knew all the medical terms for the type of cancer (the actual mutation name etc.). When we looked at him blankly, and Ed shook his head and asked him to start again, he got the message and did slow down… a bit! However, he did explain things clearly and was happy to answer our questions so I think that his speed-talking is more a personality trait than him being deliberately short and wanting to get rid of us.

Well, despite the relative brevity of the discussion with him, we did get all the information we needed: there is a drug, in tablet form, which they feel will be a suitable treatment for my mutation and at this stage. Because I have such a rare mutation, there isn’t a targeted therapy, but this tablet is targeted at cancers which have some common features – something to do with the protein in the DNA. The reason we were sent to Erasmus is because they are a centre of excellence for this particular mutation (not mine, the similar one). The tablet has been being used for over two years and in some cases it stabilises the cancer and in others it reduces it, so obviously he can’t say what will happen, but it’s encouraging. Of course, assuming that it does work in my case. Some patients have been on these tablets for over a year which I was also relieved to hear because it means that there is a chance that just taking a tablet a day could keep it at this level. If I have radiotherapy on my lower back to get that pain sorted, and then take tablets to keep things at this level, then my quality of life will be very good!

Hold your horses lady! The thing is, as with every treatment, there are side-effects and the most common ones, which are almost guaranteed (like a free gift when you buy a product) are diarrhoea, tiredness and skin problems. There are more which generally occur later, after having taking the drug for a while but the first three are very common and will happen almost immediately. Mmmm.

After Dr Petri dish had given us the low-down on the drug and why he thinks it is suitable for me, we talked about when to start. He said that there was a meeting of the oncology board with professors and experts from different hospitals on Tuesday in which my case was going to be discussed, so he would contact me after that to confirm that this was the way to go and then I could start. We reminded him about the holiday and that is where the first Q word of the day popped up – he said it was better to go and enjoy the week away, and start when we get back, because diarrhoea and quality of life don’t usually go in the same sentence. (he didn’t say that!) He then sent us to the specialist oncology management assistant (what a job-title… I actually think I have got it slightly wrong, but it summarises what she does!) to explain how things are going to proceed now we are in the “Rotterdam system”. First I had to get blood taken…gosh, this is becoming an unnecessary drama; they can see that I have had lots of injections lately from all the marks and bruises on my hands and arms so they comment on that and then I get the commentary while they are doing it.. “oh it’s coming but it is a bit slow.. Carol (lady on reception) can you come and get me the extra yellow and green tubes, I’m afraid if I let go of pressing on this it will stop flowing” then, to me “are you alright love, you’re doing well, keep breathing!”… Well, first of all, it’s not that bad, it really didn’t hurt but the more of a soap opera you make out of it, the more uncomfortable it makes me! The thing to focus on is that hopefully once I am set up on this drug, I probably only need to have blood tests every 6 weeks which is ages compared to what has been happening recently. After they managed to squeeze enough drops out for a couple of tubes, we went to meet Janneke, our SOMA (see job title!) who is lovely. She is a self-confessed lover, not only the phrase ‘quality of life ’, but also the concept of it. She explained what is going to happen while we are under the treatment of Dr Petri dish and his superior the professor (he who shall not be named… because I have also forgotten his name!) She is our first point of contact, any time of day or night, we have her mobile number and email address and she really stressed that I should use it for any questions, however small or any changes I notice etc. so that was really reassuring.

Janneke then explained a bit more about the side-effects: for each side-effect she has given me a prescription for something to counteract it. The diarrhoea, of course not pleasant, is manageable as long as you get the right balance of medication, the skin rash (joy of joys) apparently does not fall within the plethora of varieties I have experienced. The type of skin complaint I can look forward to experiencing is teenage spots on my face; the typical T-section, forehead, nose and chin, proper spots that you could squeeze (but NEVER should!) In other words, lovely! A couple of others that the doctor hadn’t mentioned and that usually happen with longer-term use (not sure how many weeks or months that means) are a change in hair structure – she said the hair can become thicker.. even eyebrows and eye-lashes…. my eyes widened in excitement. Could there be a positive side-effect that women would (and do) pay good money to achieve the same result?! Thicker, longer eye-lashes! Of course, if you have a mono-brow and teenage spots, having beautiful luscious eye-lashes might not be as wonderful as you had thought. Knowing my luck, hair that you don’t want to grow, will.. I will be sprouting nasal hair like rope, and may have to invest in new shoes because the fur on my feet will have become excessive... although that might keep my feet warm! Now I am just getting carried away. Finally, nail infection: the edges of your nail can become infected and exude a kind of pus. What was it again about quality of life again?!

So my cancer could be stable but I might have chronic diarrhoea, be hirsute and spotty with oozy nails. So what did I say?! Crikey Janneke, where’s the dotted line to sign on?! Of course I am going to do it and am hoping that I don’t get all the side-effects but am kind of resigned to the fact that I will and because my perception of the concept of ‘quality of life’ is now fluid, I am not dreading it either. If it happens, I will deal with it. I’m not saying I won’t get upset. I have had lots of side-effects but the ones I kind of expected, specifically hair loss, I didn’t get and I am really grateful for that. I had skin rashes but I could pretty much hide most of them, but if I get teenage spots, that will affect my self-confidence, no matter how much make-up I put on or how much I tell myself it doesn’t matter.

A really important fact I want to mention is that this drug is really expensive, they don’t prescribe it at normal pharmacies, only ones in hospitals because of the cost. The I feel this is significant is that they wouldn’t prescribe it if they didn’t think it would work. Petri dish also said that if this doesn’t work, the next step is immunotherapy, but that only has a 20% success rate and this drug’s effectivity is much higher. He didn’t say how much, but…well, it is higher.

It’s now Wednesday morning and we are in Tenerife (hurray!) Yesterday was a strange day, getting up at 3.30 a.m. just threw me for the whole day really. I did manage to get in some quality….. dozing on a sun lounger by the pool, eating outside, sitting on our balcony watching people…all of which I want to work on again today and add in more activities of equal, if not higher quality!