Fun at Fifty!

Gosh, a month since I posted on the blog! Tuscany was amazing, ticked all the boxes, I had a very special time and a very happy 50^th birthday. I was quite stunned to come across two other breast cancer survivors in our holiday group. (16 of us, 4 men and 12 ladies). We had a bit of a laugh, wanting to tell the rest of the ladies in the group that they would all be fine and free of cancer as we more than represented the statistic of one in eight life time risk of developing breast cancer! (Our ages, 49, 50 and 67) We shared our stories, it was good to be moving on with our lives and to be amongst a group who wished to enjoy life, who shared similar interests and who enjoyed good and interesting company. The walking was scenic and not too challenging, covering around 40km during the week. I was, by the end of the week, shattered, a combination of early get ups, late nights and exercise, but I can’t wait to book my next Exodus holiday!

I ticked off a couple of things from my bucket list on my return. I shared a wonderful weekend back at home with my girlfriends and ticked off “An evening in a casino”! I managed to lose a fiver and had fun learning to play Black Jack and roulette! Also ticked off “Seeing stags in the wild” but unfortunately didn’t hear them roaring as it was too windy out on The Atholl Estate

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I received a very special birthday gift, a copy of The Scar Project Book and a copy of the DVD Baring It All, the story of David Jay’s photographic exhibition of young breast cancer survivors, portraits that are beautiful yet challenging, cathartic and empowering.

Tomorrow is a big day. I am meeting with six local artists and having my first photo shoot. I never imagined that I would one day have a boob job and pose topless! Tomorrow is our first meeting to discuss ideas and how to proceed. I have four post-surgery ladies including myself interested and hope to find one or two more willing to take part. The interest and support in the Breathless Breastless Project has been amazing. I am now looking at venues and funding and making plans for an exhibition next Spring.

Annual check up & Update

Lots to tell you!

Same familiar environment at the hospital – difficulty parking (do they not realise how much stress this causes patients?) same broken TV in the waiting area, pale blue walls and the ticking clock. I felt quite sick, we sat but didn’t speak to each other, dealing with our own thoughts, we just squeezed hands now and again until my name was called by a friendly nurse, who then proceeded to ask if I had been here before?...

Gown on and more waiting until a knock at the door but it was not my consultant but a junior doctor. Mixed feelings about that. I thought my consultant (who was on duty in the clinic) would wish to see me at my first check up to see how her surgery had healed and to check how I was doing? But my last meeting with her was a bit frosty as I clearly asked too many questions and pushed for a visit to genetics and gynaecology. By the way, I still await a follow up and results from that appointment some four months ago. When I asked about it at my check up there was nothing in the notes as the notes were “lost” at the time and had clearly not been updated since.

The doctor was pleasant and thorough, checking over my scar area and reporting that the mammogram appeared normal, no visible calcifications, it did show dense breast tissue but nothing untoward, no change since a year ago. That was very comforting news. She queried some lymph nodes under my right arm and checked with the consultant who still didn’t want to see me but sent me for an ultrasound scan just to check. As I lay on the couch I became very aware the fine line that determined whether or not I went down the same path as last year. Thankfully, nothing suspicious and I was free to go home. I’m hopeful that is the end of the hospital visits until next years check up.

I’ve had a great response from my posting on the Aberdeen Artists page on Facebook. In the region of 10 local, talented artists have come forward with a view to getting involved and getting an exhibition off the ground. Already cemented a couple of meetings for November and have also been invited to sit for a still life art group. I have approached CLAN, our local cancer centre who are willing to promote the idea to other ladies who have been on a breast cancer journey as more models and stories would be good. I have also had interest from an educational point of view from Robert Gordon University Social care / Medical departments. There’s lots of work involved and it’s very exciting!

I attended a feedback session last week at CLAN for the University research project that I attended some weeks ago re Our Cancer Journey. The findings were that we either received really excellent care or really terrible care with nothing in between. Many of the underlying issues began with the GP and then proceeded to result in lack of communication between departments and no continual, consistent care and a lack of information. I was not surprised by any of this but it is clearly unacceptable. This should not be a game of Russian Roulette.

A light lunch was provided and the opportunity to chat to other cancer patients and to staff. We all found it very cathartic. I took the opportunity to network in an attempt to make some progress with my art project! This resulted in opening a friendship with another lady who has undergone a double mastectomy who is keen to be involved and positive interest from CLAN and Robert Gordon University.

Very excited about my 50^th birthday trip to beautiful Tuscany. At the age of 48, for a fleeting moment I had no idea if I would make it to 50. I have everything to celebrate! To the fabulous six ladies who accepted an invitation to travel up to Aberdeen and help celebrate further in a couple of weeks, I very much appreciate you continued friendship and support and I so look forward to our fun weekend together!

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!

One year on.

I shook uncontrollably for several minutes, chest tight, breathing rapid and shallow. I could be dead in a split second. I sat looking face to face with a pride of seven lions ripping their way through a wart hog. One false move and we could all be the main course. I ddin’t shake uncontrollably when I was told I had invasive cancer. Does that mean that lions are scary and cancer isn’t? Not exactly. But it did mean that if the lions were going to get me I had no time to do anything about it, no time to do all the things on my bucket list, no time to plan. Two seconds and it would all be over. I can honestly say, that although It was terribly thrilling, I had never been so physically frightened as when I sat in front of the lions! I have been lucky enough to experience several “trips of a lifetime” over previous years but this one was extra special for the four of us, being the first time we had travelled all together, under our own steam to a long haul destination, rather than on a package. We had lots to celebrate with special birthdays and being a year on since my cancer journey began. The trip exceeded all expectations. We spent quality time together sharing amazing experiences and memorable moments across the whole of the Cape, West to East. This was one thing on my bucket list, that for a long time I had wished to fulfil.  Watching my beautiful daughters step out of the safari truck onto the wild savannah for sundowners as the sun was setting will remain with me always. I was last in South Africa some 30 years ago when I was not much older than my daughters, it was very special to return with my girls.

The two week holiday was a complete escape from all things cancer. No news articles, no posters, no rattling buckets or supermarket campaigns, no one asking about it, no one telling me about it. I could almost pretend it hadn’t happened and that it didn’t exist. On my return back to everyday living, I have avoided writing the blog for a while longer but eventually I am faced with cancer related issues, both myself and in the wider world and it helps me to write things down and to get things out of my head. I have friends who are dealing with their own cancer related journeys and it’s only right that I should support and care yet that can at times bring a heaviness to my heart. I have seen the impact this week on my daughter, when one of her friends lost his uncle to cancer, leaving behind an 18 year old daughter. I sometimes forget to be aware of how the girls are affected by what’s going on around them and that events may stir up emotion and fears in them too.

 A letter arrived from the genetics department at hospital. It was a comprehensive review of our meeting detailing all that we talked about and providing information about what happens going forward and the implications of genetic testing. As it stands at present based on family history, my daughters face a moderate risk of developing breast cancer in the future. Within current guidelines they will be entitled to breast screening from around 35 years of age which will include MRI as well as mammogram. It is likely that guidelines and treatments will change between now and then, some 15 years into the future! I myself, will be having genetic testing through a research study which will look for BRCA1 & 2 and the sample will also be used to try to identify other genetic mutations. If I am carrying the BRCA1 or 2 it puts me at significant risk of further breast cancer and would also involve the girls making a decision as to whether they have genetic testing themselves. They would have a 50% chance of carrying the gene if I were a carrier. If there is no mutation identified we remain at moderate risk. Tuesday marks one year on since my diagnosis, I shall be back at the hospital have bloods done for the genetic testing. I was due my annual mammogram in June but as yet, now into August, I have had no appointment. Another NHS Grampian blunder, I am no longer surprised just disillusioned. I phoned the breast care nurses who confirmed I should indeed have had the mammogram in June and she had no idea why I and been missed. An appointment will be sent out.

Since taking the mefenamic acid I’ve had two periods which have been somewhat easier to manage but it’s difficult judging when to take the drugs as it should be the day before menstruation. With a cycle that varies from 30 -35 days that’s no easy to guess and I spent four days taking the drugs last month in the previous days! I am still on the twice daily iron, soon to drop to once a day for another month. I don’t seem to have knocked the fatigue completely on the head yet, having had two days last week when I was back to daytime sleeps and feeling a bit rough! Although I did have the excuse of long haul flights! Still waiting for the results from the gynaecology endometrium biopsy some six weeks ago and a follow up as to whether to stick with the mefenamic acid or try something else. Nothing seems to get done in a hurry! I’m told the genetic testing can take months, and I think they mean 6 – 12 months!

 Soon to be fifty, I have decided to draw up a list of fifty things to do over the coming year! Some simple, like watching the moon and the sun rise with a beach picnic, meeting up with old friends, some more time consuming and costly, hiring a tartan camper van for a few days away and a trip on the Loch Lomond sea plane! I have 10 things on the list so far, message me with any bright ideas! I shall be kick starting the events with a week on a Tuscan vineyard in October including a visit to the Sienna Wine School! Cheers! x

Race For Life

The “wobble” came out of nowhere on Saturday evening. I pulled out my Race For Life number and back label, together with my trainers and running gear and fell apart. Just over a year ago life was healthy, no cancer. May 2012 I had run the Edinburgh half marathon and raised £650 for our local cancer centre. On Sunday I was racing for life with my own name on my label. It seemed impossible. Underneath “MYSELF” I added the names of those friends and family who have had or are on their own cancer journey.

Surrounded by a sea of pink, an ocean of faces who had been affected in some way by cancer – I Race For Life For “My Nanna, my Mum, Grandpa, my Uncle” “Kick Cancers Butt, Cancer we’re coming to get you, Cancer get outside” if only it were that easy. It was overwhelming and was the toughest part of the race. A raw awareness of the impact this disease has on everyone.

 

The air was warm with a blustery sea breeze as we ran along the esplanade. We jogged our way through the maze of walkers, buggies, dogs and runners. I was very happy to have my fellow running companion and good friend Jackie at my side, sharing the event and providing hugs and laughter. Cheering us on and snapping with the cameras at the start and the finish were both our husbands.