Metastatic Breast Cancer and My Life

(11) This is probably the most difficult blog post I have to write. I don't want to seem as though I have all the answers because of course I can't possibly have all the answers for everyone because we're all so different.  Our disease is different, our bodies are different, our home lives are different and our treatments are different.  All I can do is talk about what keeps my spirits up ....most of the time, but not all the time, because MBC is a horrible disease; there's no denying it, and because I will be taking treatment every day for the rest of my life.  At the moment my scans show "stable disease", meaning it's no worse than it was when I started  treatment seventeen months ago, but neither has it improved.   I don't want to upset that very delicate balance just because I'd like a break from the side effects.  There's no time off for good behaviour!  At times, the fatigue, low blood count, night sweats, muscle and joint pain, c...

(10) For those who prefer to access posts by using Facebook, posts will be shared to this page: Please note I have decided to delete this page for privacy reasons. It is no longer accessible. "Living Well With Metastatic Breast Cancer" ........

(9) Quite clearly there are two aspects to coping with a diagnosis of metastatic breast cancer .  I've described the early days of the first aspect, which is the physical aspect.  I still had a long way to go to achieve mobility and an independence of sorts; definitely not the independence I wish for, but at least a higher degree of independence than I'd had for the last few years.  That is gradually returning as I'm becoming physically stronger but the one thing I miss, that I long for, that I don't know how to cope without, is to be able to jump in my car and take myself somewhere.  People kindly offer to drive me wherever I want to go and I appreciate the thought but I've always loved driving and the inability to drive is an actual, physical source of pain every day.  It's something I have yet to come to terms with unless I find, when I'm in less pain, that I can do it again.  Currently, I'm taking a large amount of opioid pain killers which are ne...

(8) As a separate issue from my story, it has come to my notice that two of my blog posts did not publish, although I thought they had. Post number 3 entitled Some Facts and Post number 6 entitled That Day were omitted.  This has now been rectified so that you can catch up with the story. I apologise for this lack of continuity.  I'm disappointed because I deliberately tried to order the posts in such a way that the blog would be more interesting. I have also changed the settings so that anyone can comment.  It's not necessary to register.

(7) Despite the grief I felt, I resolved that once I was admitted to hospital I would set that aside and act with grace, cheerfulness and humour .  I refused to make it harder on myself than it needed to be so I gathered up my courage, along with my pillow, a blue fluffy blanket (I hate those horrible cotton weave blankets they use in hospitals), books, my iPod, phone and perfume; all the necessities of everyday life!  The morning of the operation dawned and I was ready for the eight o'clock start I'd been told to expect, but it seemed no one else was ready.  I've had operations before and have always been issued with all the gear the night before and have been talked through what will happen in the morning and when I would be expected to be ready.  It turned out they hadn't mentioned that my first stop would be Nuclear Imaging to have dye injected so that my lymph nodes would show up, nor that everyone would be running late except me so I decided to just go with t...

(6) Little did I know it but that day when I noticed there had been a change in the appearance of my left breast was the day I would begin to need to draw on all the inner resources I'd been gathering and I would need more and more inner resources as time went on.  To think that one quick glance in the mirror could confirm the thing that women dread was shocking.  Treatment for breast cancer.  There was no doubt at all in my mind what it was but at that stage I had no idea just how much this would test me.  I've always been a "live in the moment" person.  I've never made long term or even medium term plans.   I live for that day and that day only.  I note down appointments and plan those but apart from that I let life unfold as it comes.  Because of that, I've always been a relatively carefree person who never worried too much about anything and now, even though I had something to worry about, my mindfulness meditations came to the rescue. As...

(5) As my health declined more and more until I was no longer an entertaining, fun person, able to go out for coffee mornings with friends or attend parties and lunches I began to make a major discovery, one that saddened me deeply and left me isolated from the outside world.  My network of friends gradually began to crumble until there was almost no one left who kept in touch with me.  I would receive an occasional email or text from one or two friends but that was all, apart from my closest family members, and I have a very small family.  What saddened me even further was that people I knew weren't staying away because of a fear of illness.  They would actually mention in emails that they were busy and time poor because they had been visiting a friend in hospital lately!   For some reason, though, they stayed away despite text messages from me almost begging them to visit.  I had actually come to that..... It would be an interesting study into the hum...

(4) During 2012, I was still looking for answers and to this end,  I visited four physicians and two neurologists (the latter in case there was a neurological cause for my increasing weakness).  I spent four days in hospital in May under the care of one of the physicians, who ordered a battery of tests which didn't include a  CT scan.  If only I'd known then what I know now; that a CT would have immediately pinpointed the problem.  Why did he not order a CT scan?  Because his opinion was that my fatigue must be caused by a heart condition and he zeroed in on that and looked nowhere else.  Sure enough, he did discover there were plaques on my heart so, as far as he was concerned, that was the answer.   The fact that most middle aged people will have plaques to some degree didn't enter into it.  At this point, my symptoms were made to fit into the scenario that he came up with and no more investigations were entered into.  I was to take ...

(3) The purpose of telling my story is primarily to give readers a glimpse into the life of a woman with metastatic breast cancer and to sprinkle some education throughout that story; facts that governments and agencies whose role is to encourage screening tests, sadly, leave out and to emphasise that, when quoting survival rate figures, metastatic breast cancer is included in the same category as early breast cancer.  This is the main reason that women with metastatic breast cancer are advised by well meaning people that they can beat this disease if they have the right attitude.  "Think positive"..."Keep fighting"...."You can beat this".... and on and on.  The fact is that Stage IV or metastatic breast cancer cannot be beaten by strength of will, positive thinking or fighting it.  Stage IV breast cancer is a killer.  The words I was told by my surgeon were simple and straight to the point, "It's incurable but it is treatable" which means ...

(2)   Note:  If you wish to email a question or suggestion use: positivetrialsblogspot@gmail.com My first reaction to my son's decision to step into my place was relief washing over me.  I'd known for some time I could no longer keep going, not even at the much slower pace and with the reduction in standards that I'd had to accept as my new normal.  Just the same, I had always been the one in the family who made everything happen, paying the bills, cooking, cleaning, washing and putting the clothes away.  I was the fairy godmother who magicked the house tidy every day.  I was the one who found the "missing item" that was right in front of their noses.  I was the one who joked and teased and made them laugh and stepping back from life is not part of my nature.  I grieved for the way I used to be and I could not imagine that I could be that way again yet at the same time I believed utterly that I could make myself well.  Cognitive dissonance ...