I’m not ok. It’s an odd feeling and hard to put in words. I was in Norway over the weekend and got drunk for the first time since being diagnosed with Splenic Lymphoma (I’ve been avoiding too much alcohol). At a certain point in the evening something suddenly changed and since then I have been feeling very uneven and troubled. It’s simply that I’m suddenly finding it hard to deal with having my condition again, with no discernible reason for the change.

Maybe it’s not that. Maybe it’s that whilst I have obviously known what I have I hadn’t fully admitted it to myself. I think the whole travel documents thing brought it home. I know the insurance companies are just covering themselves for risk, but if six companies think it’s better not to give you insurance because they rate the odds as unacceptably high that you will need treatment within the year it kind of gets to you. Especially as each time you are rejected you have to go through the symptoms and what you have with the person on the phone.

(Incidentally I did finally get insurance, but only because I have a client I moved into a new office and I contacted them directly to help me out. Kind of felt like I was creeping through the back door, but for £400 I’ll take it!)

I also put a 5 year survival calculator on my blog. It was just a widget I found and decided to put on, but once you see it on the page it makes you think about things you often try to ignore.
So anyway I got drunk in Norway and realised that I wasn’t ok. I’d been dealing with my diagnosis, been even tempered, treating it as a joke but I suddenly felt like hadn’t really adjusted to it after all. Maybe I wasn’t back to normal after all…

In my previous posts I largely talk about things in a clinical way. It occurs to me that if this blog is to be entirely honest I have to present how it makes me feel as well, which is difficult as then it becomes a bit like a diary. I guess it’s a balance but if this blog is going to help people who are going through a similar thing I have to at least try and tackle this side as well.

I came across the concept of New Normal and mentioned it in a previous post. It’s the point where you know how you are supposed to feel on an average day and feel like that. The problem with this is that even before I got cancer I would have completely different days for no discernible reason.

It seems that I still haven’t found the New Normal and become accustomed to it.

One nurse puts it really well in her blog (http://www.mayoclinic.com/health/cancer-survivor-new-normal/MY02150)
‘Living with a diagnosis of cancer is like riding a rollercoaster. Each day might bring new feelings, worries and emotions — both positive and negative… . The idea is to find a new normal and embrace it. Don’t look back, but remember what makes you happy and recognize any new limitations.’

The limitations can be surprising:
– Lots of heavy lifting = Spleen pain.
– Running = Spleen pain.
– Too much Frisbee in the park with my nephew = Spleen pain.
I’ve been ignoring some of these (I did go running in Norway) and suffer for them; but as its only pain and not damage, it’s stupid to not do things you enjoy.

I have been distracting myself with how I feel as well with the mundane usual life stuff; but that’s still not really dealing with SMZL or examining how it makes me feel and think differently, is it?

I’m not really sure who to talk to or even how to mention it when I feel down. I don’t want to drag other people down as well as it makes me feel guilty.
I mean… how much do I want to share and with whom?

Does talking about it make it easier to process or does bringing it to the surface make it harder to forget about?

Plus you want people to treat you the same as they always do, which by and large has happened, but if I wanted to rant about it, or just chat it through, would it change things with some of my friends?

Finally sometimes I just don’t want to talk about it. How do I make it obvious when I do and when I don’t?

So in conclusion having a condition is difficult in itself but it also comes with some other tough questions and things to cope with. These are individual for each person.
It’s also strange that coping strategies can work well for months and then with no discernible trigger, you can have a bad few days and then, for no obvious reason, bounce up again.
I suspect there are no right answers to these and it’s just about what makes you the person in question feel at their best.

I’m still working on that and will get back to you when I know. 

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