Tuesday 28 March 2017

The Low Down

I haven’t updated the blog for while because it has all been a bit miserable. On a positive note I have been feeling more physically able. I have some pain from surgery still and am adjusting to having a numb underarm from the lymph node removal. I do have most of my mobility I just also have an arm that feels like it has been thrashed with stinging nettles on the underside from underarm to elbow. I am hoping this is nerve damage, which might fade. I also still have some side effects from chemo, mainly in my toes and fingers, and my nails are terrible. On a more positive note, I have been able to be much more adventurous with the walks and can now do the hour long walk which is a circular walk through the next village and back again. Mentally thought it has been a different matter. 

One is warned to expect depression and anxiety as the result of a cancer diagnosis, but apart from some low moods on some days and one meltdown per chemo cycle, I was just getting on with it. Then it struck. I have good support from my GP, as well as a supportive husband, and friends. But, (I like starting sentences with prepositions) whatever your support is like, you are on your own with anxiety. Anxiety is colouring my days, interrupting my sleep, and making me feel overwhelmed by things I don't normally feel overwhelmed by. Fear of the cancer is the antecedent to my anxiety but anxiety is like a butterfly looking for somewhere to land, as soon as you soothe your mind of one fear, anxiety finds another to land on. For me this isn’t just the trauma of the treatment but also the fear of secondary cancer (the terminal kind) and the knowledge that I am responsible for identifying those symptoms. My cancer was in my lymph nodes so it could have travelled already, as well as being able to travel via my bloodstream, but nobody is going to be scanning me. There is probably a very good medical explanation, after all any scan is just a snapshot of a moment in time, so can only tell you whether you do or don’t have cancer on those days. 
I knew to expect depression/anxiety at the end of treatment. I’d anticipated this with a referral to psycho – oncology. What I really wanted was to talk to a therapist who understood cancer. They didn’t really offer that, various support groups were offered, but (I don’t know if I am right about this) I don’t really want to sit with a lot of people talking about cancer because I think that will scare me more. I have instead contacted a charity that offer a counselling service for cancer patients, it turned out today there is more of a waiting list than I’d originally been told. I suspect these emotions are with me now because I have a break in treatment and not having to focus on the physical problems that displace emotions. They have all come crowding in now and that this is all a normal reaction doesn’t really help.

None of this has been helped by some confusion over treatment at times. I have consultants in surgery, radiotherapy, and oncology and none of them prescribed Tamoxifen, which I knew I should be taking for 10 years from some point. To cut a very long story short, it wasn’t until I had a call from the clinic (about something completely different) that I knew to chase everyone and found out I should already have been taking it. I don’t have any idea if the delay is significant, it worried me, and it vexed me that it took me chasing all 3 departments to find out.

To update on where I am on my treatment. I hadn’t healed enough from surgery at my 1st March appointment with radiotherapy. I was asked to come back in 2 weeks that turned out to be 3 because the Dr was away the week I was due back in. Radiation is very targeted so I’ve been tattooed and lined up on the bed I have to lie on to have it and it starts on the 5th April. I thought it would start before that; it would have if the Dr hadn’t been away, so it all feels a bit of an arbitrary conveyor belt. The good news is that they do evening appointments, so husband can take me to all except the ones that needed to be earlier, which will be helpful, because it might hurt and radiation causes fatigue. Apparently daily trips to the hospital are responsible for part of the fatigue, they don’t fatigue me now, but maybe daily is different. 

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