Better the devil you know

Health warning – stop here if you don’t want to hear an emotional rambling.

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Ok, so the last two weeks have been pretty horrendous. I’m not really sure where to start but I think that I’ll start at the beginning….being a fan of the Sound of Music and all that!

I’ve mentioned before that I think that having the coil removed has had a major impact on my psychological wellbeing. I am now pretty convinced about it….it’s either that or I am slowly losing the plot and becoming an emotional wreck. So, really, I prefer the idea of it all being down to the coil. Ever since I had it removed, it has caused me issues. I have never been someone who is totally calm and collect. Those who know me may even suggest that I am fairly passionate (otherwise known as having a bit of a temper at times!). But while I had the mirena, I seemed to manage most things, most of the time. And I should have been fairly content with that. But me being me, I wasn’t. I wanted something more. I wanted to stop having to wait for 2 hours for a blood result once a month..some people are never happy and perhaps I am one of those people, despite having spent my life trying to say I’m not.

So, in August I had my coil removed (small apologies to those people  reading this who feel I have become too personal!) I was fed up with having to wait around for pregnancy test results when most people involved were convinced I had gone through a forced early menopause. For those of you who aren’t aware, chemotherapy can send a woman’s body through an early menopause – that seems to be what has happened to me. What that also means in reality is that ever since my stem cell transplant in 2011, I have been having the hot flushes of a 40/50 year old. It means I have known as much about this physical change as my sisters who are 10 years + older than me. It means that even if we wanted to have another baby, we now couldn’t . It is just another example of how myeloma sucks.

I decided to try to take the power back through having my coil removed. In my eyes, this would prove to the medical profession that I had really gone through the menopause, mean that I could stop the pregnancy tests, and hopeful make life a little bit easier. In reality, it has caused havoc. Since I had it removed I seem to have become miserable. Don’t get me wrong, I know that lots of things are making me think in my life…things haven’t been easy in lots of different areas ( I can’t really go into many of these now that this blog is more public than I had first envisaged). There seems to be a build up of so many different life ‘circumstances’ at the same time…and I can’t cope with them all. I am a control freak. And being out of control is sending me into a tiz. Before, I would obviously find things hard at times, but it didn’t feel so mental. This time, I just don’t know where to go with it all, who to talk to who isn’t bored of hearing about me whine on, or who are my true friends. And maybe some of this is just my depression talking. Because I really would say that I am depressed at the moment. No matter how much my lovely husband does to pull me out, I don’t seem capable of it at the moment and that makes me feel even worse because I want him to make me feel better…..for me, and more so for him and the children. But that want, just doesn’t seem to be enough.

And to top that general feeling of darkness, I have had three friends and acquaintances who have lost their lives to this bloody awful disease – in the space of a week. Myeloma is absolutely crap. I’d like to call it worse but know that my lovely parents sometimes read this and would be horrified by the language that I’d like to use. But truly, the people I have seen die from this cancer, absolutely break my heart. Such good people who have tried through thick and thin to be positive. But still it has got them in the end. And no matter how positive I try to be with all of it, I know that at some stage it is going to get me too. I have spent the past year trying to be positive about the outlook for me….to say that the figures that affect most people, are going to skip me by. And I’m so lucky so far that things HAVE gone well for me. Please don’t take this post as me not appreciating what I have….I really do. But it doesn’t stop me from knowing that life is not going to be easy at some point. Things are going to get worse. And if I’m totally honest about that, it scares the living daylights out of me sometimes.

I’m trying to make things better. I’ve just been told by my GP that I need to have HRT whether I like it or not….my age means that I need to get my oestrogen levels up again and the way to do this is HRT until I am the age of about 50 (god willing!). I have just seen a counsellor today. I hope that talking to someone outside of family and friends will help…time will tell. And I am seriously considering something I swore I would never do…..anti-depressants. Not for long, but maybe to take the edge of this darkness I’m feeling that I’m sinking in at the moment. It is so unfair to Nick and the kids so I need to stop being so stubborn and do whatever it takes to make things easier for everyone.

So forgive me this post. Please forgive me for not being so positive for once. When you lose 3 people you know, who have impacted your life, in only 7 days, it makes things feel pretty damn bad. I know I’ll get myself up again. I always do eventually. But every time you get left with an extra little scar.

Menopausal Moments

Ok so this one is a bit personal…..

After my transplant I wrote about how I was possibly going through an early menopause. The hormone levels suggested it, the hot flushes suggested it, basically everything was suggesting that I was having to deal with the symptoms of the menopause at just 36 years old. That is what drugs and transplants do to you. Unfortunately, because I had the coil and wasn’t having monthly periods, the hospital was unable to confirm that this is what has happened. I was torn as to whether this mattered or not but in the end, I decided that it does matter.

I think I have mentioned that with the trial I am on, I receive Revlimid each month. Revlimid is a derivative of thalidomide and so the pharma company has to be remarkably careful to ensure that people don’t get pregnant whilst taking it. When I go for my monthly appointments, I have to wait each time for the pregnancy test to come back negative because I am of childbearing age. That doesn’t sound too bad apart from pregnancy tests aren’t like a blue line from a urine sample…they are done via bloods and this takes about 2 hours to come back which extends my day which is long enough anyway. So if I can prove that I have gone through the menopause, eventually they will stop me having to wait for that test and I will be able to get home far quicker. It still isn’t totally straightforward as there is a chance that they will make me wait for 2 years from the coil coming out to prove I still haven’t had a period (!*!*!*!) . However, at least if I can start the process now it will help eventually.

On this basis, I had the coil removed 6 weeks ago….that all seems really straightforward….apart from now I am having major mood swings that I haven’t had for years….and I seem to have developed the appetite of a heffalump! I am eating for England and piling the pounds on, losing the plot about things that really aren’t that important, and finding myself cross about everything. Arrgghh….why isn’t it simple? What is worse is that when I read up on it online, most people say that they have the opposite….weight loss and much happier without the coil…I would love that!

I need to rethink my strategy on the whole thing I think, but I’m not sure how. My plan is to see what the hospital say next month..they will do the hormone tests for me again to confirm whether they suggest I am peri or post menopausal and then they’ll have to liaise with Celgene who produce Revlimid and pay for the trial I am on. Hopefully they can get some agreement that I have gone through it, and perhaps then I can just have the coil again if the mood swings don’t go away! Otherwise Nick might just have to get a white coat for me….poor bloke!

In the meantime, I think it needs to be a diet of water and lettuce for the next month 😦