26. 6th November Onwards - Is This My New Normal?

Today I feel very strange. My main treatment has ended but I still have 8 months of Trastuzumab injections to go. This involves 3 weekly visits to the MacMillan Centre so I still feel very much in the ‘Cancer’ bubble and a long way from my pre-cancer life.

I wrote the above words 2 months ago and have struggled to write any more since. Initially I was on a bit of a high but I very quickly started to lose the euphoria of this milestone and started to sink into a much darker place. Most of the time I was fine and could go through the motions of living a normal life- or at least trying to return to a normal life! The fatigue and other side effects from the radiotherapy kick in around the end of November. My ribs and left breast are sore and I am still suffering from a flare up of my RA which affects my hands but also increasingly my knees. I have also started to take the oral chemo hormonal therapy drug Letrozole. This has a few side effects that will settle once my body gets used to it but, because apparently I am not in enough pain already, it causes me extreme muscular and long bone pain.

I thought that having finished the chemotherapy I had also finished experiencing the side effects - but apparently not, chemo really is the gift that keeps on giving! I was so grateful to have not lost my eyebrows and eyelashes and had also managed to keep hold of my nails. Now that my hair is starting to grow back - it’s red and soft and better than I could have hoped - I thought I was through the worst. However, I have now lost most of my eyebrows and have just 2 or 3 eyelashes on each eye - my finger and toe nails look like they are starting to lift and it’s just so rubbish - there really is no end to this hideous situation and I really can’t see how or when things will improve. I have been trying to work out when I will return to work - I have always loved my job but now everytime I think about returning I feel physically sick and am not sure if I will ever be ready. So much has changed since I was last there - I am certainly not the same woman who left. So many staff have left, so many new people have joined, procedures will have changed, equipment has been replaced. I have worked there for nearly 24 years, it was my department, my second home but now I will return a stranger and I’m not sure I really want to. I mean I really don’t have an option, financially I need to work - I am currently on half pay topped up by a small amount of ESA - which you need a degree to claim but I eventually managed it - apparently the government believes that I only need £74 a week to live on so its caviar all the way in the Byrne household!

It is so hard to remain positive. I know I am so much better off than a lot of people but the constant pain is so difficult. As Christmas approaches I can feel myself sinking deeper and deeper into a depression. I am so angry with myself - I have suffered from depression since I was 13 years old and had conquered my symptoms and have worked so hard to be mentally healthy for the past 15 years. I understand that it’s not my fault but in my present state of mind it’s just another stick to beat myself with.

I have been back on my Methotrexate for 3 weeks and know that it could take up to 12 weeks to start controlling my RA but I’m just so happy that there seems to be a light at the end of the pain tunnel. Of course, nothing ever goes to plan and my Rheumatology Nurse calls to say that my white cells and neutrophils are too low and I need to stop the Methotrexate immediately. This is not what I need to hear and it just brings down my mood even more. I agree to repeat my bloods in 2 weeks - I am so lucky that my nurse is so dedicated and is going the extra mile to monitor me so closely but I’m just so fed up with the pain. I am struggling to do anything, I move like an old woman, I look like I’ve aged 20 years and I just can’t see an end to it. Sometimes I still forget just for a few moments, and then I catch sight of myself in a reflection and it all comes rushing back. Despite my hair growth, I still look like I have been attacked with a razor blade - I feel that I am now channelling Fantine from Les Miserable - after she has fallen from grace!

On the 20th December I have a telephone consultation with my Oncologist and I tell him how I am feeling. He is amazing and explains that from the moment of diagnosis my body and mind went into battle and prepared to fight. Now that the main treatment is over I have gone into a kind of ‘post war’ syndrome and my mind and body are battle weary and exhausted. He says it is very common to feel as I do and he prescribed an antidepressant and suggests I speak to someone at MacMillan to organise some counselling. I know this makes sense and I totally understand it’s what I need but I just can’t get myself to do anything about it. I am constantly on the verge of tears and swing between a kind of surreal happiness and an all encompassing sadness. I am so fed up with feeling this way - it’s just never ending. The constant pain is demoralising, the extra weight is revolting, the hospital visits are boring, the inability to exercise is frustrating and just feeling like this is so debilitating - surely I should be dealing with this better. I am so over feeling so miserable but I can’t pull myself out of it. I have read this post back and I can see how sad and down beat it is. I feel that people will not understand and will expect so much more of me than I am able to give. Why am I finding this all so hard?

I am trying to start the new year with a new mindset. I will try to eat healthily, try to move more, maybe attempt some form of exercise each day and try not to beat myself up if I can’t always keep to it. Maybe this will start to ease the black cloud that I am living under. I do want to get better, but feel that others may feel I am wallowing in it all - I’m not, I hate it so much - I feel like I am suffocating - How did this happen to me? Why did it happen to me? Every time I watch television there are a multitude of adverts relating to cancer and it still doesn't seem real that I am now one of those people. I think this post perfectly shows that my brain is all over the place. I know I have repeated things from previous posts but I really feel that I am trying to deal with a million things all at once and I struggle to concentrate and get things straight and orderly in my head. I understand that this is all totally ridiculous, all I need to concentrate on is getting well and I know I will get there eventually. And despite everything, life carries on.