As you know I went to see the Rheumatologist last week full of hope for a miracle on the scale of Harry Potters skills! although I didn't get the miracle I was craving, I did come away feeling happier than I have for a while. The information and suggestions the consultant has come up with,and my own personal decisions I have made based on the information hopefully will help my life improve dramatically.
The first thing is my joint, bone and muscle pains aren't caused through inflammation - this is a good thing believe it or not the consultant said to me ( I really didn't think so right at that moment as my back and hands were in a bad way). It really is the best news, this means the joint pains aren't caused through Arthritis or Rheumatism - so I asked her if it was then in fact my medication that was causing the pains, yes she said. I told her when I was at the breast clinic in the previous November for my six month check-up, I had discussed my joint pains etc, they told me in no way was it my cancer drug that was causing this problem....and this is why I was sat with her today, she said her clinic see's many ladies from the breast clinic with the same problems. I can tell you I was not very happy, it has been another six months of pain and discomfort that possibly needn't have happened. I feel sorry for the breast clinic doctor when I go in May - they will be getting a piece of my mind for sure! I told her the Tramadol don't actually touch the pain at all.
She asked if I'd had any physio on my back, the answer to that is no. She wasn't overly impressed with this ( bearing in mind my back issue is about 18 months in the making, it in itself has been complicated with other problems and investigations - at first it was assumed my back problem was in fact part of the problem I'm having with my lower pelvic area), she is sending a letter to my GP practice for them to organise physio locally to me ( can't wait ).
She asked how I was sleeping, I said not good, and that I haven't for years now. I told her it wasn't just the back pain or joint pain that prevented me sleeping, there's also the lower pelvic aches and pains,bladder issues and of course flushes! - I told her I mainly catnap through the night and don't ever really get restorative sleep and I can't remember the last time I did.
She is putting me on a drug that she says will help me get off to sleep, she says it won't probably keep me asleep all night, but the few hours I get will be restorative and so I should feel better, she also said it will help with my pains. So here's hoping the drug does everything the doc says lol - I'll be feeling like a new woman :)
We discussed the ridiculous uncontrolled weight gain I've been suffering for about 18 months, I told her about following the "healthy plate" most of the time and up to Sept all the exercise I had been doing, I told her it had been difficult in recent months due to the increasing pain and stiffness in my joints and of course my back problems. She said after the invasive treatments I'd gone through, they try to minimise the meds you are put on because the body has been through so much, however now she has recommended a weight loss drug to try kick start my system into weight loss, she says combined with the painkiller and physio hopefully I will be able to get back into the gym and then hopefully lose weight and watch the effect snowball.
The weight is not only an issue because of where it is ( central ), this is a very dangerous place to carry excessive weight, it can lead to many serious and life threatening illnesses, but also the extra strain on my skeleton, having being diagnosed with Osteoporosis last April ( due to chemo induced menopause), seen as my back is already bad, any extra weight is just going to make the situation worse. So at last someone is listening to my concerns and actually agrees with me!
She was really surprised and couldn't understand why I wasn't on Calcium and Vitamin D supplements to go with the Alendronic acid I take for the Osteoporosis...she is informing my Gp's to prescribe both for me. Due to the chemo induced menopause I am what they call in a premature menopause, this could have a big effect on my life as I cannot have any hormone replacement therapy due to the cancer, so any and all help with keeping my bones as strong as possible is essential for me to lead a normal life.
It probably seems strange to you all, but I feel validated after my consult, this did make me happy even though things are far from sorted and the pains as still there, however, someone acknowledged my current health based on facts and didn't try and wrap it up under the cancer umbrella. Hopefully her suggested meds and steps forward will get me back on track. She said I have and still are in a really harsh place regarding my health and I have had more thrown at me than anyone should have to endure, but she could see I want so very much to be able to get out there. And I do, I want to take my place in the world again full-time instead of these little pockets of energy and determination.
So with everything that happened and the information I was given, I have decided to stop taking my cancer drug. I didn't make this decision overnight, nor do I take this decision lightly. I know the medical profession will strongly disagree with me over this, and while I can appreciate where they are coming from, I cannot live the "life at all costs", this is in fact not living but existing and I don't want to do that. I am too young to carry on as I have for the last 18 months, so for me quality of life is more important than quantity. I believe in living life to the fullest and having no regrets.....I have to come off the drug and see if all my joint stiffness and bone pains etc go. If in a few months it turns out there is no difference to my current health problems, then I will consider going back on it, however if my health improves dramatically and I can actually get out there and live my life actively, then I know from my own personal point of view my decision was right for me....and like I want, I will have no regrets.
So moving forward, I hope to quickly get on with my physio and then into the gym to get on with my training not only for the Yorkshire 3 peaks, but Mt.Kilimanjaro.
Until next time
Tracy
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