The Status Quo

It has come to my attention that I have been quite remiss when it comes to talking about my health of late. It is not because I am absolutely bored rigid from talking about my body. I am now all about my feelings and that, bless you, is all I have been sharing of late. A lot of people do not know that it is very important to be in touch with one’s emotions, I am not one of them. I am sure, to an outsider, my relationship with my thoughts can come across as some sort of self indulgent codswallop; these outsiders obviously have no idea what they are talking about. Fluffy is important, equal to the reality.

The truth is, apart from my permanent, self diagnosed, severe IBS, from a medical view point, every thing is *okay*. I do not want to jinx it. On Thursday, I was told that was I doing “incredibly well”. Take from that what you wish, I have, and some of that may have come with a hint of paranoia. I assume that comment came with the caveat of ‘all things considering’.

Since the 7 November, I have two clinic appointments and these, if we remove the pressure I place on them, have been relatively nondescript. In December’s I was asked whether I was going to have an allograft (donor) transplant when It comes back as, if that is the case (it is), the Medically Trained People will plan for it. Personally, I found this sort of talk premature and I did not appreciate it. The rest of the my clinic talk has revolved around Velcade side effects, MRI results and my ongoing fatigue. The latter irritates the whatsit out of me, but I am still told that it is normal. I do not want to be normal. I want to be above average and not spend my weekends in bed because I overdid it in the week. I also do not want to be embarrassed about not having the energy to get out of bed. I am told this will improve. I suppose it is, because the need to stay in bed of a morning is diminishing.

I have tackled a cold or two, it is difficult to be precise because they go on for so long, distinguishing between the two and finding the start and finish, is a big fat waste of energy. The last one/two lasted for a cool three-four weeks, grew into a chest infection with a return of my childhood asthma and the requirement of an x-ray. This too, I am told is normal, although I view it as setback. My long sniffles did mean that I had to see the Medically Trained People three more times in between my appointments and including my long awaited return to my GP.

I get very special treatment at my GPs now. I would tell you about it, but I fear I would make you jealous. There, my general practitioner informed me that I have to have a very low threshold when it comes to contacting them. Everybody I have mentioned this to have sought clarification on this statement and thus, I took it to mean that they want me to phone them all the time. I will not of course, but maybe the next time I get a cough that sounds like I am vomiting, I will not wait for a week and a temperature before I tell anybody.

As things stand, because I really feel people need to know exactly what is happening in my life, I am still receiving Velcade once a fortnight and will continue to do so for the foreseeable future. Apart from the bowel issues, the injection makes me extremely tired in the 24 hours after the injection and this then will be proceeded by a period of insomnia. I have the occasional dizzy spell and the familiar desire to chop of my left arm when I am not doing anything else. The hope is that these side effects do not worsen, because that, I am sure, would be bad on so many levels. My energy levels are improving, albeit very slowly, and I pick up bugs quicker than I can walk a quarter of a mile. I have a paraprotein level of 5. I have been referred to a physiotherapist, whose job it will be to ease some of the pain I experience every live long day and then allow me to reduce my daily dose of 60mg morphine sulphate. And finally, I am almost certain that I have now gone through the menopause and I am, by default infertile. How do I almost certainly know this? Well, I have not had to visit a certain aisle in Boots since August for a start. I still get hot flushes, but these come in weekly waves and I a drenched (quite literally) at the moment. I will find out for certain on Valentine’s Day, I cannot wait. I also think I need to see a chiropodist but this has absolutely nothing to do with having myeloma, and I will probably never speak of my toe tails again.

EJB x

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