As you know August scan results were a relief that Pembro was working again, but it’s somehow been a struggle and I seem to have run out of ummph, not celebrating I think as much as I should. I had a big birthday coming up in early November and with treatment every 3 weeks, and a scan also due in November I was wanting to plan in a big holiday in the October gap of treatments but didn’t dare plan it before my August results. I have annual travel insurance which has due for renewal in August which wouldn’t cover melanoma, first hurdle, second hurdle getting a hotel in a place that suited both us and my daughter who we would be visiting in Tokyo, third hurdle We should really delay booking until after the August scan results, in case they are bad. In fact I didn’t want to book it at all I wanted someone to take charge and just look after me and say after all you’ve been through let’s do it. The problem is my husband who I love very deeply is not that keen on holidays, a week after my August results I realised if we hadn’t already booked a holiday to Japan to see my daughter it wasn’t going to happen. There just seemed to many hoops to jump through and steps to take that for someone who hasn’t been abroad for 10 years I just didn’t want the extra stress. I had already thought it through that if I had bad results I wouldn’t want to go, and what my alternative holiday might be, in fact posters on this site gave me some suggestions, I wanted to see autumn leaves that would be just as good as those in Japan. My husband booked 10 days away in Cromer Norfolk. I love Cromer though, lots of National Trust properties near by, lovely walks and views of the sea, and walks through wooded areas for the falling leaves. My two greatest friends also popped down to treat us to lunch on one of the days and we had a fun walk on the beach.
Diversion over back home and muster up for the next scan and scan results. Scanxiety is such a great word, scans come along and you have anxiety about them, sometimes the day the scan letter arrives with the date, the night before a scan, and again when the results are due. It’s so silly really as you can’t control them and in my experience can’t predict the symptoms when they turn from good to not so good. I think I have had so many scans now since 2015 that I don’t worry about them like I did at the start but I know there is a subconscious worry because I get niggly, more easily irritated than normal, or irrationally my eyes leak, it’s not a cry as there is no emotion felt but tears leak down my cheek, mostly at night when I’m trying to get to sleep. I am now sounding as if I have no emotional intelligence at all, and that in a way can be true. When I was younger I used to protect myself from bad news and get a bit Data or Mr Spock like but if you do that for to long to protect yourself from hurt I have discovered that it’s difficult to enjoy things to. Anyway I digress and haven’t even mentioned the November scan results yet.
November a few days after my birthday and scan results are due, I’m feeling well and clinic is running to time. They always ask you how you feel when you really just want them to tell you how they think you are. I fell into the trap of telling them I’m fine minimal side effects just the usual tiredness for a few day, the smile of the consultant made me forget to ask first what the results were. The consultant smiled and said we were pleased with the results, disease is stable. I have to pause reality in my head at this point because big smiles, we are pleased, meant I was expecting at least further response, and hoping for virtual complete response as that is what my experience when I had Pembrolizumab from April 2016 to 2017. I’m not sure if my face was showing my pause and rewind, but the consultant reminded me it was good news and that this time the amount of cancer is a lot less and harder to report on.
Stable is still good I know it is, and I’m not a perfectionist by any means but once you have had a good response stable is not as good as you hoped for. I am replaying in my head her giving me results back in April 2016, when the previous results were stable and then without feeling any different my scan results changed to progression and that’s when I moved from Dabrafenib to Pembrolizumab. As if she read my mind the consultant said remember the tablets you were on previously, well you have Dabrafenib and the newer drug Trametinib to use as a combo if you need them later. I knew this information and that Ipilumamab might also be an option, and they are happy to keep going with Pembrolizumab at the moment so another 3 months of that and then the next scan. I have talked to myself reminding me of the people on this site who are much worse off, and reminded myself of metastatic melanoma patients I have met who have not been complete responders but who have been stable for years so it’s not a big deal, but it’s three weeks now since my scan news and I’m stuck in a bit of a down mood, not totally down, not must see a dr for counselling or medication down, just not me.
I’m finding it hard to analyse how I feel, which is why I thought I’d start this blog, as sometimes writing it down helps, although it also feels like I should really do this in a diary to self rather than where others can read it, but perhaps some others might read and say yes we felt like that, so perhaps it might help someone or someone might read this and and comment to me how they have been through it and come out the other end. I know I’m really lucky, someone today talking about the dreaded brexit asked how I voted, to which I truthfully told them I didn’t vote as I wasn’t expecting to be alive. It seems such a while ago since my July 2015 incurable diagnosis, and even with the break of a year with no treatment it seems such a long time to go through treatment, and I’m now 6 months in of every three weeks and feeling a bit like it will never end, and that I haven’t found a new normal yet.
Ive struggled with volunteering for Macmillan as a community champion as I although I truly want others to ask for help and experience on the site, I really don’t want at this moment in time to read about others having to go through the uncertainty of will their treatment work or not, as it is just knocking any positivity I’ve worked up. So I’ve selfishly decided to stop, which is hard as well as I don’t work, and so volunteering had become a bit of my identity having done it for 17 months. I wanted to find a replacement for it in my life before giving up (and I’m not saying I would never go back to it, just that it’s not right for me just now), it has been good for volunteering, giving me a bit of confidence back, as confidence can take a knock after a diagnosis, but it’s much easier to feel positive from a clear scan. There are so many champions that volunteer here while being a carer or being a patient themselves, and without a second thought give their time to help others, and I feel really sorry for not carrying on but also not sorry as I can still come on line without the champ signature to help others and to ask for help when I need to.
On 5/12/18 my local news had my consultant and a metastatic melanoma patient on, showing how he had failed Immunotherapy drugs, but he was on a trial for TILS for people who have run out of treatment options on the NHS, he has just heard it is working for him, and that the NHS might consider this later as a treatment option, my mind is hanging on to this positive news, as a possible further back pocket option.
I can understand how when people are incurable and aren’t feeling well how hard carrying on can feel, I’m just finding it hard to allow myself to feel it’s hard going when I’m not feeling unwell, but just lamenting that treatment is tomorrow, and that I’m going to feel a bit tired for a few days, and I’m uncertain when I might gain a enough get up and go to sort out how to live my life well.
My next blog should be February scan results, ummm
