So, we were looking forward to starting the 3rd cycle of chemo yesterday afternoon and seeing Prof at 5pm for our once a cycle appointment. Jimmy had his chemo as well as The Red Devil but the appointment with Prof was, again, just not meant to be. I explained before that we should have seen him last Friday but Ilhaam phoned to say he would be away and she rescheduled the appointment for 'the Monday' at 5pm. It turns out that 'the Monday' was not yesterday but next Monday. We received the results of the higher M Proteins on the 11th of September and today is the 23rd and we have still not discussed these with him. Yesterday we asked Sister Olivia when she does Jimmy's bloods to please do another M Protein reading so that these results will be in, in time for our appointment with Prof on Monday but she said they are only allowed to be taken once a month and the last lot were taken on 3rd September. So we asked her to please speak to Prof and motivate that they be taken earlier so that we hopefully have some comparisons to discuss on Monday. By getting these readings back (as at the end of the second cycle of chemo) we will have a better picture of what is going on. There are 3 scenarios: one - they stay the same; two - they drop or three - they rise. We won't know what is going on but we will have some results. Of course if they don't do the M Protein bloods now, when they do the results will not come in around an appointment with Prof and does this mean we will wait 3 weeks to hear from him?
As I am sure you have picked up from my tone, the sky is very grey at the moment. We are almost into our 6th month of Cancer and boy, does it eat at a person! For five and a half months Jimmy has been stuck here and working from home and there has only been the odd occasion that we can go out and due to the length of treatment, the good days of good bloods are becoming less and less. For five and a half months our children have had to miss their weekends and Wednesdays with us when they have been sick. We can't even get in the car and drive down to Fish Hoek to visit my brothers or my parents in Bredasdorp because when Jimmy has been up to it, for five and a half months someone has had flu. For five and a half months we have been looking through rose tinted glasses except in our case they are cancer tinted. It never leaves you, not even when you are asleep because we both dream about cancer too. We knew it would be a long road but we didn't think we would be stranded in the Karoo on a flat, never ending dirt road, joking on the dust. Jimmy finished his 4th cycle of chemo on the 11th of July and how far have we come since then?
As my cancer survivor friend Cheryl (Cheryl D from now on as I have 3 Cheryl friends) explained to me in an email this morning: "When a person has to stare cancer in the face every second of every day, it does end up making us feel morbid and being positive gets harder and harder. This is the time that you have to fight harder and show cancer that you will kick its ass!" I am trying to be strong but there is the guilt too. I feel guilty for not being strong all the time when I can only imagine how Jimmy must feel. And then I think back to April and May when I was so strong and at that time Jimmy couldn't even walk, shower, get dressed or go to the toilet on his own.
But as I said to Cheryl D this morning......this too shall pass. Thankfully these days only come around in a little group every now and then. The rest of the time we are positive and thankful for what we have and are able to find the positive in even the most negative of situations.
I follow a couple of blogs and have not been reading them of late. Perhaps this is what is missing in my life at the moment. Reading and sharing in other Multiple Myeloma patients' day to day lives and understanding what they are going through also helps us cope better.
These blogs are the understanding of what I call 'the Multiple Myeloma norms' and make coping with not coping that little bit easier and this is, in essence, what I truly hope for my blog.
1 comment:
Hi Viv, you are giving me bit of in insight to what my parents must have gone through all those years ago. We are both thinking of Jimmy and yourself and the hell you are going through. stay strong and keep fighting . I can only emphasize , as I don't know what Jimmy is going through, but what I know of James he is putting up a good front .
Sorry about the locusts but the birds really enjoyed them.
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