Well biopsy day arrived and the doctor explained he would be taking several samples and one for the trial. Last March I signed up to the mel resist trial when my lymph node increased in size last March and I’d been on Pembrolizumab for 9 months, so they could take my node to look at what was different about it that it wasn’t reacting. As this was a needle biopsy they were I assume taking extra fluid out of the node. The doctor commented that the node looked smaller than it had on the scan results a few weeks ago and asked if I’d had any treatment since, which of course I had. I took that as a good sign and wondered if it would have any impact, I was also relieved that the ultra sound hadn’t picked up any other enlarged nodes, he would have biopsied those to. Bizarrely someone was sitting in the room and when the procedure was over she had my biopsy which left the room seconds after I did.
On the way home I saw a lorry from Dumfries which is where the funeral of my Aunt was that I was missing that day, sorry that was just a quirky aside as it made me smile, I know she wouldn’t have minded me missing her funeral, but it made me smile as if it was some message for me.
My Friday’s Pembro had been changed to Monday, I’ve not been on a Monday before, you’d think that the same place wouldn’t feel too different because it’s a different day but it did because the oncology area has had a make over. The reception desk doesn’t look as friendly, not because the staff are different but because it used to be low and rounded and now it’s squared of and higher and a stark white. It gives more room to the seating area and I’m making the assumption that there are less staff now and that shortly the little podium check in machines placed on entering the oncology are are soon going to be in use.
The waiting area has had new chairs which are much better, and more of them I think where you wait for treatment but the waiting area for clinic doesn’t seem an improvement. They have put a couple of tables so people can sit and have a coffee at the WRVS shop but for those 4 chairs it has taken way to much room away from the clinic seating area and the chairs are placed alternatively facing each other. I would hate to sit with my back facing away from the tv screen and the counter that displays which blood test they are up to and there’s insufficient leg room between the chairs facing each other, oh well.
So Im eventually called for my Pembro treatment, I feel quite sorry for another lady who is beside herself with waiting for her turn she’s being consoled by one of the nurses, she had a blood test at 10am and it’s 2:30 and she’s still there as her appointments not till later. I’m glad I always have my blood test a couple of days earlier. Three attempts to get the cannula in that day which before now has really set me on edge but I’m quite mellow then it becomes apparent that there’s a query on my meds. I’ve already said I’m expecting a 6 weekly dose today and it’s only a three weekly dose. The prescribing doctor is called and the pharmacy called and they get the dr to speak to me to explain, the dose is 3 weekly like I’ve had before and the pharmacy is now shut so it can’t be altered. I can either accept this dose, or not have treatment today and come back later in the week for a 6 weekly dose. Give the dr her due she did not try and persuade me either way or say how expensive the drug was but she did say it would need to be wasted. My mind is going into overdrive as my nurse had cancelled my 27/12 appointment and set up appointments for January in 6 weeks time I have my daughter coming over and I do not want to spend Christmas Eve travelling over an hour for a blood and an hour back again and as for 27/12 we drive her an hour in the opposite direction to get the train. I just wanted a normal Christmas I’ve already had Christmas week appointments and Easter, and my birthday and this year enough was enough, but it’s a hard choice to delay an appointment especially when things aren’t going right. I needed to concentrate on today and let tomorrow worry about itself and we went ahead with the dose. But I was upset it was as if I had to choose between being a mum and having a good Christmas visit, or prioritising my health. Loads of thoughts and emotions just wizzing around. I was able to stop them and just keep in the moment but when I got home they all kept flooding back again as we were unable to sort anything going forward as the day unit was full for 3 weeks time anyway. So the next day I was going to have to phone my CNS to arrange a drs appointment and treatment appointment, to be fair I offered to do that. One of the nurses was going to sort things but they had a couple of medical problems to deal with from first time chemo patients I think. There were no appointments but they say they always get a cancellation but I cant imagine how that works.
After an evening where I couldn’t relax I woke up and I’d decided that I wasn’t going to come in while my daughter was home, I wanted to prioritise family, as long as they didn’t worry about a short delay and if it was possible to arrange that. I prepared what I was going to say, and rang the nurses at 9am, good job I wasn’t winging it as I got an answer machine they weren’t going to in all day and the next day is clinic day so it won’t be sorted that day probably either. Making a decision always calls the mind a bit though.
6:30 in the evening of clinic day my phone rings though, she understood I’d only had the 3 weekly dose but my biopsy histology report was in (that was quick) quirky results. They showed it was melanoma but that it was withering almost dead so it showed the Pembro had been working and the lymph node dissection surgery was not now required. That she’d talked with the consultant and it was ok to keep all the appointments booked for 5 weeks away and have a treatment break over Christmas. The consultant will talk to me about the histology report in January and Jan will definitely be a 6 week dose.
So loads of emotions this week, but it seems like I’m going to enjoy my Christmas turkey with the knowledge that Pembro is still working. The gap which was bothering me to have while I could imagine things potentially on the move, is emotionally doable when you feel that the next dose can cope with any delay. So my quirky result result will mean that if I get another node popping up on a scan in the future I won’t be rushing to worry so quickly. It looks like I might be heading to be a complete responder again and we will be talking again about when it will be safe to stop Pembro.
