It’s Friday, which is never a good day for me. It never ceases to astound me with this cancer how different you can feel from one day to the next. For me ‘That Friday Feeling’ has taken on a whole different meaning to the one it had before!
Up until now I have not attempted to claim PIP as I probably don’t warrant it at the moment, but I am keeping a diary so I am able to contrast the difference between good and bad days. I read on the Myeloma forums about people’s experiences of being turned down for PIP who are suffering far more than me. I really don’t think this cancer is understood at all, let alone what the drugs that we have to take do to you.
For me, Tuesdays, Wednesdays and Thursdays are my good days, these are the days I can lead a pretty normal life: I can do the shopping, take some exercise, tidy the garden, cook the dinner etc, all without too much effort but then Friday comes around! Today I have to do things in short bursts with lots of rests in between. On Friday I am lucky if I can cross one or two things off my ‘to do’ list and this afternoon I will probably resort to going back to bed for a while as otherwise I will be too exhausted, now that’s not ‘normal’ is it?
The problem is we often don’t look ill at all. I have lost count of how many times people tell me I look well. Of course I do; I’ve lost the bit of extra weight I was carrying, I am able to exercise a bit on the good days, I’m not at work so not experiencing all the usual stress and I’m not cooped up all day in an unhealthy environment! But, we are ill, probably more than most of us have ever been in our life time to date. Sometimes the treatment is worse than the condition itself. I do wonder if the assessors that come out to assess capability really understand this or understand how the steroids can make us look and feel better than we really are. I am full of beans when I am pumped up with steroids but that’s not a true reflection of how I feel the rest of the time, or how I feel on my ‘off’ week without any steroids at all when I feel awful all the time. Anyone else on steroids is weaned off them gradually but we have to suffer the withdrawal symptoms all the time; its a constant roller coaster of emotions and capabilities.
I accepted voluntary redundancy today; it will give me some money for the next year to get me through my current treatment, the stem cell transplant and subsequent recovery period. I will then look for a less stressful, local part-time job when I am in remission (hopefully!) in about a years time. I’ve never not had a job; I have been employed or self employed my whole working life, no gaps. I even went back to work after my children. It feels odd, almost irresponsible somehow, however not having the worry of it does feel like a weight has been lifted from my shoulders.
I will need to claim ESA the week after next as I will no longer have a job, so I am hoping they will put me in the support group for ESA as I am currently receiving treatment and will be for some time to come, however I know how difficult all this can be so I wouldn’t be surprised if it doesn’t happen! I have never claimed benefit in my life, other than Maternity benefit so this is a new experience for me. I am so grateful to the help and advice I have received from Macmillan as without them I don’t think I would have been aware that I could claim anything at all. It’s all rather daunting, especially at a time when you feel very vulnerable and not very ‘with it’. The money will really help to alleviate some of the worry over finances; thank goodness my mortgage is paid off. I wrote my car off a few weeks ago too; the insurance has paid out and so I won’t replace my car for now so that will save me some money in outgoings. Thank goodness my family are all grown up. I can’t imagine having all this worry with a young family and a mortgage to pay. I don’t think anyone really understands the true costs of having cancer.