Good morning! I hope you all had a nice weekend, I know I did with the double whammy of father’s day and a 20 year school reunion. A 2am getting home hasn’t happened for me since… Well pre kids I think and I certainly felt that on Sunday, even with the father’s day lay in (thanks Jo).
It’s all been a bit hectic here but I had my chat last week with the nice people at St Barts, who smeared me in jelly. It took a little while to see them, but when I did I could tell the news was relatively good as I didn’t have the Prof, I consulted with one of the junior ladies.
In the ultrasound (see previous post) I had been told that he was slightly concerned that my lymph nodes were visible by the liver and other organs. Not massively concerned, but he did an ‘hmm that’s odd’ which coming from a medical professional is not particularly reassuring.
Everyone has lymph nodes but they shouldn’t really he visible from an ultrasound (is my understanding). I did what I’ve got very good at over the last six years, I put it to the back of my mind and ignored the slight concern until I had more information. (A very useful skill as an MD!).
Still he played the lymph node visibility down a bit but said that my specialists at Barts would want to talk to me about it.
Well a month or so elapsed and I found myself in the waiting room all prepped for my fifth chat this year (I guess they like me). I’d got in early to do a collectible trade (a new venture and perhaps one for another time) and then sat down with my usual coffee. This appointment was slightly later so Jo joined me having dropped the kids off at the nursery.
I’m quite used to the waiting room by the way, but for people newly diagnosed I think it can be a little forbidding. It feels like a great weight of knowledge resides there, specifically about the condition you have. It’s good, I mean knowledge is very useful, but also can be a heavy experience.
Anyway I got called, weighed (same weight for five years, so my total absence of planned exercise must be working, that or I’ve reached critical mass already) and asked in to see my doctor for the day. She was very nice and exceedingly competent (as they all have been). She said not to worry too much about the lymph nodes as although it is unusual they had my original scans from six years ago and having compared the two they were like that before.
Basically ‘it ain’t broken worse than it was’ (disclaimer for Barts, she didn’t say that). She then wanted to take my bloods again (third time his year). As she was still a little concerned by the platelets number. That said if it hadn’t changed from the last two she was happy for me to book in for six months time. If she wasn’t happy she would call me the next day.
Having received one of those ‘you need to come down to the doctors surgery today’ I can tell you nothing puts the fear of God in to you more than receiving said call. Luckily no call came the next day, so I guess I’m good, and have the average chance of death for the next six months, which is frankly something of a win.
The next test does fall in December again, it seems my Christmas tradition of blood tests is set to continue, but it means I can ignore my cancer for he next six months, any new symptoms nonwithstanding.
So all good news.
It was in this mood I went to my school reunion. Just over twenty people showed up (out of just over a hundred in our year) and it was great to catch up. Genuinely. It was really nice to find out how everyone had been keeping, trade a few stories of old days with people I hadn’t seen for years, and get an update on the lives of people I see on Facebook, but don’t really engage with.
In some ways that aspect was quite funny. Someone would start saying something and another person would say ‘yeah don’t you do xxx now, I saw on Facebook’.
Those glimpses into people’s lives are woefully insignificant to the reality, and so it was nice to actual speak to them about it.
School wasn’t the best of times for me. Although there were good bits. I think it’s like all things, at 11-16 you are still working out who you are. The second half was way better for me that the first, and I enjoyed having found a group I clicked with there, although that did mean losing touch with some good childhood friends, who h was a shame.
Still what was especially nice was seeing everyone now they had become comfortable in who they were. At 36, you kind of seem much more comfortable in your skin and this was actually incredibly nice to see.
So I thoroughly enjoyed it, and had some great talks with people (not least the three ladies I chatted to in the car when I have them a lift home).
The next day was father’s day and in a couple of quiet moments (two kids under four, mean you only get a couple). I reflected on the reunion. It made me feel a little bit sad actually. Twenty years had passed since I saw a lot of those people, and a lot more I wanted to catch up with couldn’t make it. Twenty years. I’ve been diagnosed with cancer for six years, and the original prognosis for my condition is 50/50 survival after ten.
Now I know that this is skewed for all sorts of reasons, mostly age of diagnosis and new treatments coming out, but it made me reflect on the odds of a forty year reunion and the likelihood of going to it. We would all be 55 or 56 for that and although I’m determined to hit 60 I also think there’s a good chance I won’t. That’s pretty sobering.
So for me the reunion was bittersweet. The day itself was great, and I absolutely would do it again just to catch up with people, but the danger of looking at large chunks of time, opposed to the day to day (as most of us really do) is it makes you think about the long future. That said all the nice comments on the event were welcome and I absolutely think we should do one in ten years, I’ll just wait another nine before broaching the topic.
Anyway that was yesterday. Today I feel upbeat on the train, with a good interview candidate lined up and a busy day ahead. I’m picking up the kids from nursery tonight, and it’s going to be a normal busy week. I don’t have any more tests for six months. I’m not actively falling apart, and I reckon I’ve got at least another three to four years (being hopeful, all things remaining the same). Before treatment. Which will take me to ten without having needed intervention, fingers crossed.
It was great to catch up with people, my life is broadly good, and I’m making the most of it. It’s natural to be sad at times, that’s life, but that should hopefully be balanced by the good. In this case seeing what everyone has done and catching up with people I really wanted to see, and some I didn’t expect to enjoy seeing as much as I did, was great. Having cancer is just one of the things that make me me and seems you can’t be happy all the time, I’ll take the fact that Saturday was a brilliant night, and aside from longer term reflection my life is largely a good one.
To leave on a happy note, here is a picture of my kids having fun on a roundabout, and one of all the people I enjoyed catching up with at the reunion.
Glad to have found your blog. I’ve been recently diagnosed with what seems to be splenic marginal zone.
The tests are inconsistent and may be aggressive, or include aggressive markers.
There’s so little about this rare type, so it’s exciting to see your blog. The kids are sooo cute.
To cut to what I need right now, and see if you have any info. Do you know in the USA, who any of the knowledgable smzl doctors are? I need 2nd opinions and guidance on treatments. I can find lots of good lymphoma doctors. I can’t figure out who pays attention to smzl.
Hey curls, in terms of individual doctor’s I’m afraid I can’t help you. There are people who read this who may comment with some details. If not I belong to a Facebook group that has a few members with smzl. It’s probably worth joining that and asking there. 🙂 https://www.facebook.com/groups/150523202172237/