I can’t believe it’s a month ago that I got my Waldenstrom’s diagnosis. I think I can best describe the past month as a rollercoaster: it’s been a hectic 30 days, but also it has been a relatively normal 30 days. There has been a lot of doctors, and tests, and procedures and a whole lot of Googling…but nothing life changing. Other than a cancer diagnosis, that is.
The emotional stuff
Emotionally, it’s been…weird? My attitude to the cancer changes regularly. I have days where I think that once I get past the chemo I will be fine for years and years, and there are other days when I think that “this is it” – I am a cancer patient for life.
For example: I have been booked into hospital three times in the past six weeks or so. The first time was pre-diagnosis, for a simple IUD change. When the nurses/anaesthetists came to ask me about illnesses, medicines etc everything was a “no, no, no”. No I don’t take medication, no I don’t suffer from hight blood pressure, no I have no heart problems etc. I merely mentioned that I was diagnosed with pregnancy induced haemolytic anaemia 8 years ago, but that’s it.
Fast forward a few weeks later, and I am being asked the same questions and suddenly I have a list of meds, and I have to say that I have a Lymphoma (What kind? Can you spell that?). I was devastated when I had to give these answers on my last admission, because I realised that this is now me. Forever and ever. Me, who never got sick, who has never been to a GP, who never picks up the bugs that always catch Craig. I am now permanently ill. And I don’t feel that much different than I did two months ago.
I also have to be very careful about my emotions around my family. As you can imagine, my kids were petrified when they found out. And my mother! The policy here (enforced by me) is that I am always going to be honest and open, but not dramatic. I want my kids to know that I am telling them everything, so they never need to worry if I am dying or not (Zac’s fear), but I also am not obligated to take them through the more technical or emotional stuff either. It is working out really well so far, and I think my kids are secure that given the information I have now, I am going to be around for a while. It is particularly important to be honest with kids, and to have an open channel of communication, because they have access to Google, and will find the things you don’t want them to find. For example, Micole obviously googled Waldenstrom’s and came across the life expectancy stats that I talk about here, and freaked. So it’s just important to talk, answer questions while not putting in unrealistic koombaya-like expectations.
Also, kids are like sponges. When I came out of hospital post-diagnosis I immediately went to Zac’s teacher to chat to her about it. As I walked through the door, she said it was good to see me because she has been worried about Zac…he has been very distracted the last week or so. See?
I also had to decide how I am going to deal with this news and my colleagues. Craig had already adjusted his work commitments to accommodate my illness and to ensure that he is there for me (And he has been!). I had to decide how much I wanted/needed to share with my other colleagues. Fact of the matter is, since I am so open about everything on this blog it would be madness to hide it from them or not to inform them, because they would find out anyway sooner or later. But also…what do I say? “Hi, just a quick heads up that I have Stage 4 lymphoma in my bone marrow but I’ll be fine?“. It’s a difficult line to walk, and I am managing it on a case by case basis.
And what about me?
And then of course, there are my alone moments, when I contemplate my immediate and long term future, by myself and without the pressure of putting on a brave face in front of everybody. And I’ll be honest, those days vary, and I let myself go with the flow. Sometimes I am optimistic and determined, other times I am petrified of the chemo. I worry about my kids, especially Zac because he is so young and still needs me for a long, long time. I need to stick around for him. I get sad that we’ve had to put our plans to live overseas on hold for a while (but not too long, we hope) and there are other plans that Craig and I had as a family that need to just wait a bit now. I sometimes wake up in the middle of the night and start googling and googling and researching. Sometimes it’s good, other times it’s scary. Like I said, a rollercoaster.
Of course I spend time thinking about money, and leaving my kids well looked after. About leaving a legacy. About leaving a bit of myself behind for my kids to always have (letters?). About writing books. But I also remind myself that unless something goes very very wrong, I am not dying anytime soon. And, I could always have already been hit by a bus (this applies to you too), so we should all, always, live our life to the fullest now.
The one good thing is that I have now given myself permission to prioritize myself and my health. Yes, I need two naps during the day, so I take them with no guilt. If I am tired or weak, I react accordingly. I don’t do social stuff that I don’t feel like doing, and I am streamlining my work even more (Although there are limits to this, which I shall talk about in another post).
Friends and family
At first, my mother was worried sick, but is now better. My sister shares my attitude of “Please, no drama, just deal with it as best you can” and Craig is my rock of reason in all the madness, and constant pillar of support. All the good wishes and sentiments, private messages and emails…I value them so much. Love to you all. You’ve all been wonderful – except for one inconsequential weirdo who has been stalking me online for about 9 years (hi!!) and makes sure to jump for joy every time I post something negative about my life…and also lets me know this.
(Btw…this little poem pretty much sums up how I deal with negative people like that. It works like a charm. Basically, ignore them and remember to live your best life, now. This also works well when you find yourself in a social media war. Just shrug, and carry on living your best life. They hate that.
Onwards and upwards. XXXX
If you are specifically interested in my Waldenstrom journey, from diagnosis to the present day, then I suggest you view this page to see all the posts I have written about it, in chronological order.