Friday 13th

The familiar post mark of NHS Grampian on an envelope in the post box on Friday morning. It was Friday 13^th. I am not superstitious but my heart raced as my fingers pulled the letter out. I had been told the results would be sent in a few weeks, it had been a few days, I was nervous. “This is simply to say that your mammogram has been reported as normal”. Huge relief and an open door to move on after a tough year. I didn’t quite feel the elation that I had expected though,. The letter wasn’t saying I was “all clear” that the cancer would never come back, that I could stop the drugs, that they are sure there is no cancer,( lobular is notorious for not showing up on mammograms). They were saying right here and now everything appears to be fine. And it’s all about now. I try to live much more in the present, not the past or the future, but for today.

There are a lot of social media postings on various sites that come through on my news feeds, aimed at being inspiring and uplifting. There are indeed some amazing stories. Women who have “battled” cancer and gone on to climb Kilimanjaro, cycled Lands Ends to John O’ Groats, walked to Base Camp, raised thousands of pounds to help save people like me. Walking on victorious after their triumph with this terrible disease. There seems to be a need to prove something after you have come out the other side. Is it a need to enrich our own life, to prove it to ourselves? Or to show the world that we have lived through this awful time and that we can continue even more glorious than BC. (Before cancer).

Throughout my life I have challenged myself and I have done and seen amazing things and I am so very happy that that is how I chose to live. Fifty years on and I no longer feel the need to prove anything. Merely to allow myself the time to slow down, relax, enjoy, look around me and live fully. That’s not to say I don’t have dreams or plans, I do. Lots of them! My “Bucket List” of 50 things to do in my 50^th year has reached 25. I might leave it at that to allow more time to fit most of them in! I will publish the list in the “Pages” section at the top of the blog where you will also find photographs and poetry. I have also written my own list of “100 things to do in your life time”. These are all things that I have done in my life up to now.

I have not given up on the idea of some artistic project involving breast cancer images but I have had difficulty in getting anyone else involved and I haven’t found enough time or energy to push things forward alone. That said, I have one or two of my own photographs and some poetry and I have made contact recently with some local artists in the hope someone may take on the idea.

Tuesday is my annual check up at the hospital, I guess then I am officially a one year cancer survivor!

Cancer research news on Tamoxifen

News has just been published on the effects of women stopping their prescribed Tamoxifen too soon. I count myself lucky as my side effects have been minimal compared to many. The list of side effects is extensive and many more appear on cancer forums that are not officially listed. I myself have been experiencing a slightly elevated body temperature that comes on around one hour after taking Tamoxifen and remains between .5 and 1c degree up all day. Low grade fever has been experienced by many but is not listed as a side effect.

I can't speak for everyone, but I have not been given any support with Tamoxifen since being prescribed it after surgery a year ago. If we were seen regularly by the nurse or GP to chat about how we were coping I'm sure many more women would stick with the drug. There are things that can be done to help some of the side effects but none of this is explained or offered. I suffered heavy menstruation for months which lead to anaemia before I finally managed to get help in controlling things better. Despite being given more drugs to take I am largely managing things myself as no one is in the least bit bothered about a follow up. That’s where the whole tamoxifen therapy is falling down. We need on going support.

At my two week post surgery check up I was given a prescription and told to take Tamoxifen for five years. That was it. No follow up until one year later at my annual check up. By that point many women have indeed given up as it all becomes too much to bear on top of the cancer itself.

I am not in the least bit surprised by these headlines today
Cancer Research Tamoxifen News

Silver Linings

This time last year I wrote -

 “My own life feels momentarily on hold while of course everyone else around me carries on as normal. For a few weeks I can’t carry on as normal and I wonder if the same “normal” comes back or if it is a “new normal”. All seems a bit weird and can’t believe I will be in hospital Wednesday afternoon. Lots of text messages, voice messages and cards today, thank you to everyone for thinking of us.Bag packed and I guess I am ready. The four weeks since diagnosis has raced by. As my friend Kim says, one day at a time for a while and best of all try to have one special moment in each day no matter how small.”

I continued with the “one day at a time” for quite a while and I have made sure to enjoy special, magic moments in most of my days.

 My cancer diagnosis has been an education.

My knowledge about breast cancer has grown vastly, not previously aware there were so many different types of breast cancer, no idea how I would look after a mastectomy, no understanding of why some people had radiotherapy and chemo while others didn’t. I have learnt how Tamoxifen works on the body to block further cancer cells, I have discovered the effects of anaemia. I have learnt about genetics and gene mutations. I have discovered, sadly, that the NHS is not what it should be.

Relationships in all walks of life have been tested, some have grown stronger, some have diminished and some have stayed the same. Within each of those groups, each change has been for the better. Those relationships worth the effort have grown and developed into richer, deeper friendships, the ones that were using up too much energy, going nowhere have closed and the ones that have stayed the same were the ones that were stable, solid and perfect just the way were. Noticeably my children, who have never treated me any differently, who still don’t like to empty the dishwasher, who still leave wet towels and clothes on the floor, who still ask “what’s for tea”! To them I was always Mum and nothing changed. They have always told me they love me and have always told me I am an amazing mum, and they still say the same. With so many things up in the air at the time, that “normality” was a huge comfort to me.

It’s incredible to look back over the last twelve months and see how far we have come. From a very dark place of unknown, immediately followed by Paul’s redundancy, we did indeed Dance In the Rain for some months and came out further on having found some silver linings along the way, which has been quite amazing. The redundancy paid for a holiday of a life time in South Africa, a new job for Paul, with shorter hours and a whole lot less stress, no need financially to let out the basement as an extra income, reducing my work load in the house and giving us chance to enjoy the whole house while we remain here in the hope that next spring someone may come along and want to buy her!

Of course it’s not all a bed of roses. Some days I get weepy, the anniversaries of diagnosis and surgery (this week last year) have been surprisingly emotional. I try not to think back to “before” to the time when I had two breasts and hadn’t had cancer. The battle with the NHS is draining, forever chasing appointments and follow ups. Eleven weeks since I was seen by gynaecology and still no follow up as promised. Two phone calls later and I finally received my annual mammogram appointment for tomorrow, some two and half months late as I had been “missed”. It does not fill me with confidence and does not help with the “moving on” process.

I need to find something to do with my time having had twelve months “off”!  Although I am good at filling my time, I am some days very lonely. Despite over seven years in Aberdeen I have made very few friends. My previous support work was always one to one, so very little contact with other people, time spent doing the house involved only trades people and with girls getting on the school bus, no opportunity to meet other mums. I’ve tried evening class and the gym etc which are always good to get you out but rarely provided long lasting friendships.

I’ve recently joined “Meetup.com” local groups set up for people to get out, do something and meet like-minded people. I hope to go to my first meeting with the next few weeks! I’ve also put my name forward to volunteer at a local playgroup. I hope some new doors will open as I am ready to move forward and further enrich my life!