The new normal

Dave, my lovely doctor,  said that the further away from all the treatment I get the better I would feel.  Six weeks have gone by now since my stem cell transplant and it's actually quite hard to believe how different I feel compared with just a few weeks ago.

The BEAM chemotherapy really takes everything out of you. It is so noxious that not much can survive it. Hair...gone. Skin on my hands and feet...gone. Fifteen percent of my body weight ...gone. Muscle tone in my arms and legs ...gone.  Sense of taste...gone. Energy...gone. Immune system...gone. All my childhood vaccination protection...gone. Appetite ...gone. 

I must admit that on coming out of hospital I felt really low, low on energy and low in mood. I felt light years away from who I am and how I should be moving and eating and thinking and being. I felt like an empty shell you might find on the beach, all the colours on its smooth surface faded, the edges cracked and chipped, no sign of life inside. It felt like the hill I had to climb in order to get back to how I was before the treatment wasn't a hill at all but a mountain, the unconquerable North face of a mountain. That was a few weeks ago, and it is amazing how different I feel now. Physically I'm feeling better every day, walking a bit further, doing a bit more. I even went swimming this weekend, which felt amazing and exhausting. It is going to be a long time before I'm physically anywhere near where I was before all this but as is so often the case "it's not the getting there, it's the journey!' 

I saw Dave last week and he said that the further on I get from the all the treatment the more 'normal' I will feel. He was particularly talking about the emotional 'normal'. My Lymphoma isn't like some cancers where the doctors can say that it its all gone, that you are cured. However Dave explained that I was in 'Complete Remission.' This means that there are no detectable traces of lymphoma in my body, but that it might come back. The longer you are in remission the less likely it is to return. Usually doctors say that you are 'cured' if you stay in remission for 5 years. 
I had PTCL- NOS. Peripheral T cell Lymphoma (not otherwise specified). This specific lymphoma does have a nasty habit of returning, however Dave assured me that because I responded well to the CHOP and BEAM chemo there is no reason why it should. This is reassuring but emotionally hard to really process and feel at one with. That is what Dave meant by being further away from the treatment, and already he's right. I'm already thinking way less about 'what if it hasn't worked?' or 'what if it comes back?' and more about when will I be fit enough to get on my bike? when will I be able to swim without being completely out of breath? When can I go back to work?

That's pretty much the state of things from a physical perspective: that apparently empty shell lying on the beach is slowly regaining its sheen and there is a stirring of life inside, a new life form, maybe a hermit crab, new cells forming a being inside this old body and before you know it I'll be heading towards the waves! 

The emotional perspective is a whole other 'kettle of fish!' Rachel touched on this last week in her blog, how this last 11 months has made us feel in our own separate ways. I have been really surprised with what I am feeling about what has happened, and how I feel about the next phase of this journey. 

I have had a couple of sessions with a counsellor who specialises in cancer patients and their relatives and even with her guidance I have struggled to really understand what I am feeling but it is definitely something of a sense of loss; despite being determined that it wouldn't, cancer has kind of defined me this last year. I have spent my time in and out of hospital, I became super reliant on all the medical staff that have looked after me, I have grown accustomed to my daily press ups and weekly blog. But this all has to end. I have said goodbye to all the amazing doctors and nurses who have looked after me. I'm going to really miss them as inevitably we have become close during this intense process. I had to have a flu jab the other day and I found myself feeling at home with the prospect of going to the surgery to have an injection, not because I enjoy it but because it felt like going back to 'normal' life after weeks of no contact with hospitals! How weird is that? 

So what next? I feel like there's a big hole where the cancer was, and I need to find a positive way to fill this hole. Apparently this sense of loss is quite common but it's so confusing and all consuming. Turning the clocks back eleven months, all we could dream of was being rid of this disease, but now it's gone we feel somewhat lost at sea, directionless. I want to celebrate this victory but at the same time there's a sadness along with the sense of uncertainty about the future. With time and distance hopefully will come clarity and as Dave said, as I move further away from the treatment the better I will feel physically and emotionally, the more the colour will return to the faded shell and the better 'normal' will feel.