23rd June – Well yesterday was one hell of a day. In to see the oncologist and called straight away. Getting worrying now as, yet again, another secretary knows me by name and, sadly, he does also. I am getting well known! So in I go to one of the little rooms and Sinead comes in after me. She briefly goes through my results and then the hard stuff starts. I am definitely going on interferon. I knew this, actually I’ve known this since January but somehow at the back of my brain I had a thought that maybe because I’ve managed to dodge the bullet yet again they might just leave it. No doesn’t sound like it. She asks what I know about it, I’m honest and tell her I’ve trawled the internet, am aware of the side effects but equally aware that everyone reacts differently. She then proceeds to tell me that they only ever got one patient to 9 mil iu’s and he lasted only a couple of days. There sets a challenge for me! So apparently, initially I’m to expect severe flu like symptoms, but about 100 times worse, for the first few days. As time goes on, these are supposed to ease but then come the diarrhoea; lack of appetite, sleeplessness, hair thinning, an incredible fatigue, headaches, the list goes on and on. However if I get dizzy this is an emergency situation. My organs will also be affected as in liver, kidneys, etc. not to mention depression, and I will be monitored closely for this. Should this happen I will be referred to yet another consultant and he will prescribe medication. Oh doesn’t this just sound like fun. She gives me a list of all the details plus a list of emergency phone numbers for when I am in trouble. She, kindly, gives me a container into which I am to put the needles and the hospital will dispose of it. Think this scares me more than anything, it’s the needles, how the hell am I going to be able to inject myself?
The next stage is that she phones the interferon nurse who will come to the house and get me started. So when do I start? Yay I got my way, it’s not next Monday, because of the golf on Tuesday, but instead the following week. Sinead reckons I probably won’t be able to play golf the following day until my system gets used to it. I’m to drink loads but go easy on the alcohol, if I will be able to drink it at all, that is. He arrives in then, boy oh boy he is very nice but I’m really not liking any of this. It is now official. I start Monday 4th July, day after my wedding anniversary. For the first 4 weeks I take 3 mill iu’s Monday, Wednesday and Friday followed by daily Monday to Friday for the following 4 weeks. Dose in then increased to 6 mill iu’s and continues for a number of weeks, then eventually 9 mill iu’s. I may have to go up, reduce back, stabilise then go up again. This sounds horrific. I will have to have blood tests and see the oncologist every 4 weeks. I will be having regular scans too. He kindly gives me the prescription and off I go to pay.
Sinead is there to meet me again, my head is now completely reeling and I haven’t a clue what she says to me. I pay, collect my blood tests form and leave without my umbrella.
I arrive home with a splitting headache and am not in the mood to talk to anyone. OH phoned me in car and I gave him a brief run down but when he comes in I just clam up and tell him I’ve nothing more to add. Really felt like directing him to the internet to look it up himself! Not very nice I know but I wasn’t feeling such a nice person at the time.
Today I’m just totally exhausted. Actually I haven’t really been myself for the past few weeks and discussed this with Sinead yesterday. As I thought, it has all to do with the fact that I had 3 general anaesthetics in 4 months and they are going to take a while to leave my system. I really wish I was feeling brighter. One other thing that I brought up yesterday was all the new drugs being trialled and the fact that Ipi has now been passed by the FDA. I again question whether I could have a BRAF test; well I asked if there was some of my tumour in storage as this test is only done on tumour tissue. The good news is there is, however, the bad news is that I can only be tested if I was on a trial. There is no trial here at the moment, there is a worldwide trial but only 25 Irish MM patients are on it. So even if I had the test and was positive there is nothing that can be done this year. I wondered about getting it done privately, he didn’t know if that was possible but again questioned why I would bother. I would bother just for myself. Having had this bloody thing return 6 times I’m fairly certain that I’m BRAF positive and perhaps, just perhaps, I might accept it better should it to return for a 7th! No actually scratch that, if I manage to suffer through the interferon, side effects and all, and I do, like my dermatologist thinks, get another tumour in 3 years you will find me hanging from the rafters!!!!
Think I’ll have another strong drink tonight….