Tuesday 12 November 2013

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 50th 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.

Tuesday 8 October 2013

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 50th 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!

Wednesday 25 September 2013

Friday 13th


The familiar post mark of NHS Grampian on an envelope in the post box on Friday morning. It was Friday 13th. 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 50th 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!

Monday 9 September 2013

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

Tuesday 3 September 2013

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!

Sunday 4 August 2013

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

Friday 5 July 2013

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.
 
 

Wednesday 26 June 2013

Gone but not forgotten.

The last few days have seen me with renewed energy levels and feeling so much better in myself. It has been remarked upon by people around me, saying how well I look, including an attractive man on the checkout at Lidl last week!. There are several things involved here – I have colour on my face after finding the sunshine in France, the anemia is hopefully declining and my hair colour has changed! I decided to embrace all that I naturally am and stopped dying my hair some weeks ago and now have a rather funky head of short salt and pepper grey hair! Funnily enough in the breakfast news this morning, hairdresser Micheal Douglas, commenting on Judy Murray deciding to go grey (Andy Murray’s mum, usually blonde), said it was much better to look a good 50 rather than be 50 and try to look 40! I look in the mirror and looking back at me is a silver lady, soon to be 50, who has emerged into midlife as a calmer, happier, less driven but more passionate woman.

It’s only when you start to feel better that you realise you weren’t quite on form. I’m better able to cope with later evenings (for ages I was in bed by 9pm!) and it’s only very occasionally that I need to fit in an afternoon nap! The prescription iron is clearing kicking in and having the desired effect together with a slightly lighter period this month on the ibuprofen and Mefenamic acid.
 
I was somewhat anxious that I would be going away on holiday not feeling on form and with the stress of a disruptive menstruation, fingers crossed things will be more manageable going forward.

Tamoxifen was a major headline in the BBC news yesterday. I had wrongly thought that the drug was already given as a preventative therapy for women at high risk of breast cancer, maybe this was only in the USA? Great news that it is now being given the go ahead to be used in the UK as an alternative to drastic surgery. It gives a reduction in risk of around 40% so there is still a lot to consider for those at high risk, given a double mastectomy gives a 95% reduction in risk of developing breast cancer. And of course it comes with side effects, although the hot flushes are not something that I really experience but for many women it’s a real issue. There is also increased risk of blood clots (must remember to get my flight socks out ready!) and effects on endometrium and menstrual cycles.

Genetics appointment on Tuesday with the counseling nurse, not sure what this will involve but I hope it will be informative and provide some reassurance for my daughters for the future.

On Sunday I shall be putting on the running shoes and joining hundreds of other women in a sea of pink for the 5k Race For Life.  I knew no one affected by cancer when I ran my first race a few years ago. This will be my fourth race in ten years and I have a list of names to write on the sheet to pin on my back  “I race for life for…”  including myself. Everyone has been incredibly generous with fund raising in the past, including last year when I raised £650 for our local CLAN (Cancer Link Aberdeen & North) just a few weeks before my own diagnosis. I will not be raising money in this race. I have made a personal donation and I will simply Race For Life in celebration of my own life, in celebration of those family and friends who have been successfully treated for their own cancer, in memory of the ones who have been taken away from us by this awful disease and for the strong people we know who are still undergoing treatment. Marking a year since my own journey began, the event is bound to bring a day of mixed emotions.

 A friend recently asked me if I am able to forget about the cancer now. In the early days, for weeks, it was all consuming, a brain overloaded with the fear, the unknown, the hospital visits and treatment. Ten months on, I forget about it for several hours at a time but every day there is a reminder, however small. A moment too long in front of the mirror catching a glimpse of the purple line that reaches from my underarm to the centre of my chest, pulling on a dress that doesn’t fit without a bra or a pad, a news article about BRCA genes, celebrity mastectomies, licensing of new drugs, new guidelines, a mobile breast screening unit parked outside a restaurant that I am having dinner at, a Macmillan poster that says “No mum should face cancer alone”, Asda’s Tickled Pink charity collection points, a post-surgery clothing & lingerie catalogue arriving in the post, an unexpected sharp jab across my chest after a day of working in the garden, reaching out for my drugs every morning. It doesn’t go away but like many things in life, you learn to live with it and over time it takes up a much smaller place in your head and gets pushed from the huge entrance hall of your mind to the small study where, it sits for now, on top of the pile waiting to be sorted and filed away.

Sunday 16 June 2013

Appointments


I hadn’t really realised how much stress, the lack of response or any attempt by the NHS to sort out my anaemia and heavy periods, had been causing me. It was only when I left the hospital Friday afternoon that I felt the weight lifted from me, as for once, I had been taken seriously by someone who knew why I was in the consulting room. I was given a full explanation as to how the Tamoxifen works, including its positive effect as an antagonist in breast tissue but as an agonist on the endometrium, causing endometrial changes in some women.  The doctor asked if any of this had been explained to me already or if I had already had an ultrasound scan. The answer to both, was “no”.

The doctor was brilliant, very friendly, filled me with confidence, explained the different treatments that I can try and suggested a scan and a biopsy of the endometrium to check for polyps or any other adverse changes. I expected to be given an appointment but was taken into a side room on Ward 42 (same ward as I was on for the mastectomy – rather emotional being back there again) and had the scan and biopsy done there and then. Not quite how I planned to spend a Friday afternoon, watching my ovaries and uterus on the screen while my legs dangled over the supports at the end of the bed in a very un lady like fashion! No polys or anything else of concern, lining being within the expected thickness as a Tamoxifen user. The biospy of the endometrium was slightly uncomfortable but fine, although as warned I did bleed afterwards.Biopsy results will be back in 6 weeks or so. Meantime, some simple measures I can take that might help. Non steroid anti-inflammatory, Mefenamic Acid and Ibuprofen two days before the onset of menstruation and during, which may help to reduce bleeding. Things will be reviewed once the biopsy results are back and once it has been established if my breast cancer was progesterone receptive or not.

At least I now feel things can be improved and I hope to shift the anemia and those occasional days of chronic fatigue that have been ongoing for some months. Just a shame it has taken four months to get the ball rolling.

June 18th marks one year since I went for my first mamogram and started on this journey. I'm supposed to have my annual mammogram check anytime now, but as yet no appointment!

Thursday 13 June 2013

Progress


Wednesday 12th June 2013

 I can’t report any progress with gynaecology in this update. Despite having e mailed Dr Bain at the hospital over three weeks ago, regarding the proposed Mirena treatment and chasing it up twice, I have had nothing more than a read receipt. Personally, I think that is unacceptable. I will keep on, keeping on. Progress has been made with genetics, forms all filled out with family health history, consent to access my aunt’s medical records and an appointment to see the genetics nurse in July.

Recent media news on breast cancer include the thinking that perhaps women should stay on Tamoxifen for  10 years rather than the current 5 in order to further reduce the risk of recurrence. I’d already started counting down to when I can come off the drug in 4 years 4 months! Also reported yesterday was, that despite 25 years of mammogram screening there is no evidence that screening is reducing the number of deaths from breast cancer.

 Although the number of women who die from breast cancer is steadily decreasing, there is “no evidence” to suggest this is because of screening programmes first introduced in 1988, researchers from Oxford University said.

A study of death rates found that the largest drop in mortality has been in women under the age of 40, who are not routinely screened for the disease. While screening can benefit individual women, it is making little difference at a national level and other factors such as better treatment are likely to be behind improving survival, researchers said.

Certainly in my case it was the “Breast Aware” campaign that took me to the doctors in the first instance, I had not yet reached the age of routine screening. In my case, with lobular cancer, the mammogram was inconclusive.

Since I started writing this post yesterday I had a response from hospital yesterday afternoon asking if I can be on the ward tomorrow afternoon to see Dr Bain. Short notice, but good result! Hopefully get things sorted before my holiday in July! It just would have been so much easier all round if they had sent an appointment in the first instance?..
 
 It was a boost to be able to manage a couple of short jogs while in France last week. Two fifteen minute sessions of sunny pounding along the quiet lanes! Also very much enjoyed several dips in the chilly invigorating pool for a few lengths. The new bikini had its first outing and proved to be perfect for the warm weather. A stroll round the Sunday market saw me purchasing a great lightweight linen cotton top that I can throw over anything to smooth out the lumps and bumps! I have quite a nice collection of suitable clothing in my wardrobe now, eliminating the need for a prosthesis, which I find uncomfortable.

Thursday 30 May 2013

Popeye


The fatigue knocked me for six for a couple of days again, together with a general feeling of being “unwell”. I phoned the GP practice and managed to get an appointment with the nurse to get my bloods checked as there had been no follow up after my two months of iron tablets.

I was told the results would be back by the end of the week, however the GP phoned at 9am the next morning to say my iron and haemoglobin levels were still below where they should be. That would account for the way I had been feeling again. Why on earth was it not followed up as routine? So I am now back on a higher dose of iron for four months. I'm also trying to pack my diet with spinach, rocket, shell fish, apricots and all good things packed with iron. Watch out Popeye!

Still no further forward dealing with the cause of the anaemia. I wrote via e mail to the gynaecology consultant to ask several questions about the proposed Mirena treatment, chased it up again last week, yet two weeks on, I still have no answers.

Seriously starting to look at which areas in the UK have reputable oncology departments, Its becoming clear that Aberdeen NHS do not have the staff or the money to give patients the best treatment. It's also easy to see why so many women give up on the Tamoxifen before the five years are up.

For now, I keep taking the drugs and will continue to pursue my quest for answers and treatment!

Very much looking forward to a week in France. Chance to enjoy some fresh garden produce, invigorating swimming in the unheated pool (in my new bikini!) and gentle jogging as training for the Race For Life in four weeks time!  I found it an emotional time being on the other side of the fence for the first time and poignant given I ran last years race with Alice just before my first mammogram and subsequent diagnosis. She ran a cracking time and I felt every step with her. At every turn was a sea of Macmillan t shirts, prostate cancer, Marie Curie, cystic fibrosis, Alzheimer’s and many many more illness’s which the nation is constantly fund raising for with the goal of  wiping out some of these diseases and enhancing the quality of life for those affected. Each and every person pounding the streets for 13 or 26 miles on their own cathartic journey.

Friday 17 May 2013

Letting it All Out


I found myself in an uncontrollable heap on the kitchen floor, crying out loud, big tears rolling down my face.

 I recall two other occasions during the past 12 months when I have reacted in the same way. The first time was the day I came home from hospital having had the core biopsies, I dissolved into a heap on the tarmac outside the house and I screamed so loud I am sure the whole of the Shire heard me. The second time was three weeks after surgery when I found myself alone at home having to pick up the pieces and dea with what had just happened to me. And there was yesterday. With Angelina’s double mastectomy, her fabulous new breasts (her own nipples intact!) and virtually no chance of getting BC, and BRCA all over the media at every hour. Every charity flagging up the event, interviews with cancer survivors, statistics being hurled about, 2 out of 3 of us survive for 20 years (a third of us don’t?) You’re at a much greater risk of BC if you are over 50, smoke, drink, are obese etc, should have ruled me out then?

Then I get the letter from the hospital wanting to treat my adverse endometrium issues that could turn cancerous during the five years of Tamoxifen, by giving me hormone treatment that could cause a recurrence of breast cancer. Not much of a choice as I see it? Breast cancer or endometrium cancer?

Following my signing up for the Race For Life, I received marketing information yesterday with my name all over it “Lulu, together we can fight cancer”. “ Lulu, women like you can make a difference” It’s the fighting that is so wearing and I don’t like to look at it as a battle. The opening line of one of my poems is “I’m not brave and I’m not a soldier”.

And so emotions had been running high all week, I had a false sense of security as I thought I wasn’t going to get my period and everything would just sort itself out naturally, and when it did come it seemed much lighter, that was until day two, yesterday, when I woke up and had to change all the bed linen and myself. Having put the linen in the machine, I gave up, dissolved, cried, let it all out, wished for my breast back and to have never had the cancer and to not be having to take drugs for the next four and half years, for a better NHS and GP’s that know what they are doing and who really care, and for a system that works and doesn’t let us all down.

And so today is a new day and I feel much better having got it all out of my system and having told you all about it!

Wednesday 15 May 2013

Full Circle


 I have no idea what is happening to our national health service. I hear one awful story after another of misdiagnosis, no diagnosis or lack of care. My own experience of the NHS over the last year has certainly not been great and yesterday it took a dive downwards leaving me little faith in the system. I have gone full circle in the past two months, and am back to square one with no progress. To prevent the adverse changes that could be happening to my endometrium, as a result of taking Tamoxifen ,and which could ultimately lead to endometrium cancer, the hospital have prescribed a hormone based IUD which can feed breast cancer!

My GP showed complete lack of concern about the heavy periods after since taking Tamoxifen despite all information clearly stating that this should be discussed immediately with a health professional as the drug can cause adverse effects on the endometrium. My GP did diagnose anaemia but having prescribed iron for two months he did not ask to see me again at any point in the future to re check my bloods. Not happy with this I spoke to Macmillan cancer support who referred me straight back to the breast clinic saying I should see my consultant as this needing looking into and sorting sooner rather than later.

I saw my consultant, who was very brief and referred me to gynaecology. Gynaecology wrote to me yesterday. No appointment to see me, just a letter. A letter referring me back to my GP to have a Mirena intrauterine device fitted. They also sent me an information leaflet. On page 6 it clearly stated that this device was not suitable if you have or had breast cancer within the last five years. Baffled,confused and upset, I e mailed a friend who works in oncology in England. She came straight back saying they would never prescribe this to anyone who has or had breast cancer and that this was also the advice of the British National Formulary. This information also appears on the cancercare.org uk site.

The reason Mirena is not suitable is that it is hormone based and my breast cancer was hormone receptive ie the hormones feed the cancer. My oncology friend has also pointed out that they should be determining the actual cause of the bleeding and should not just be assuming that it is the Tamoxifen. I have had no examinations or tests and have not been asked any questions?

I am at a bit of a loss as to what to do next as my GP, consultant and gynaecologist simply don’t seem to know what they are doing.

This is just one of a catalogue of less than satisfactory care that I have experienced during my cancer diagnosis and treatment.

GP nor consultant believing there was anything wrong with my breast in the first place.

Abrupt, off hand man administering the initial ultrasound and almost sending me home without a diagnosis

Two weeks for clinic to decide what to do after an abnormal needle aspiration.

No follow up phone calls when expected on more than one occasion.

Breast MRI arranged for a month after my planned surgery (required in order to do surgery)

No information given on mastectomy or reconstruction options, just a general breast cancer booklet.

Breast cancer nurse attempting to take blood from my arm that had just the week before had a carpal tunnel op (she soon changed when I said it felt like the stitches were going to burst!)

Breast cancer nurse visiting on the ward 10 mins before my surgery, asking me had I been down or was I waiting to go? (Wouldn’t this be obvious?) I was sat up reading at the time!

Breast cancer nurse asking if I would be going home the same evening? Lots of ladies do after a lumpectomy. Mastectomy. I was having a mastectomy. I never spoke to her again.

GP told me there was no risk for my daughters of the BRCA1 or 2 gene if the breast cancer was on my fathers side and not my mothers. Incorrect information.

The more you raise your concerns or push for answers, the more they are keen to pass the buck and just get rid of you as quickly as possible. Every time I see the GP or the hospital I feel like I am going before a jury, to be judged. Armed with my defence, trying to get my case across so that they believe me. The thing is, this is not just happening to me, it's happening all over the NHS and peoples lives are being put at risk.

Tuesday 14 May 2013

BRCA1 & 2 Risks & Choices


Interesting reading. Why Angelina Jolie had a double mastectomy.

These are the decisions facing young women who carry the BRCA1 or 2 genes.

Given that we now know there is some history in my family of breast cancer and prostate cancer, I shall be attending the genetics clinic myself over the coming months to determine if I carry this gene. The results of this, then of course, will have an impact on my daughters. If I have the gene they have a 50% chance of also carrying it. What is encouraging is that much research is being done into preventative treatments and in 15 years time when it may matter to my own girls, there may be better options that deciding to undergo drastic surgery.

http://www.nytimes.com/2013/05/14/opinion/my-medical-choice.html?_r=2&

Thursday 9 May 2013

First time for everything!..


I did something today that I have never done before in my life. First time for everything! I bought a copy of The Sun newspaper! Yes, to look at the breasts, boobies, bosoms. The ME supplement featured an article on nine women “Why we love our boobs”. The feature showed the ladies clothed, all looking glamorous and below each photo a close up shot of their naked breasts. One of the ladies was Hannah, aged 35, who underwent a mastectomy last year. Her goal? To inspire other women who are facing mastectomy.

I was so inspired that, after a bit of research, I managed to contact Hannah and exchanged several e mails with her. I am very happy to have Hannah on board for the Breathless Breastless Project!

The project is taking shape with far more interest and support than I ever imagined and it’s keeping me very busy!

Something else I did today for the first time too, was to put my shopping through the checkout at Morrisons only to discover that I did not have my purse! Thankfully it was a self service checkout so there was not a queue behind looking on at my embarrassment!

I blame the Tamoxifen for brain fog! Seriously, it is a commonly reported side effect of the drug and I have had some serious dementia moments of late. It didn’t help that I had enjoyed an hour on the beach in the sun, factor 15 applied. Returning home I had a thumping headache and a very pink face. It occurred to me that the Tamoxifen may cause the skin to be sensitive to sun exposure? Sure enough, plenty of reported cases and a note on the breastcancercare.org site, to avoid exposure to the sun while taking the drug, but nothing on the leaflet that comes with the drug? One for me to monitor and to be cautious about.

Friday 3 May 2013

Breathless-Breastless Project


I hadn’t anticipated so much interest and support so soon! I re launched the Breathless-Breastless Project on Facebook last week and have 21 likes, a very talented Scotland based artist on board and the opportunity to promote the project in an Art magazine!
The idea of the project is to raise awareness as to the disfiguring effects of breast cancer surgery yet highlighting that we are still very much beautiful whole women.  The idea was born after seeing the fabulous photographs in the Scar Project being exhibited in the USA.  Our project aims to produce paintings, showing powerful images of ladies who have been on a breast cancer journey and who wish to share their story and their scars with the world. When I was first told I would need a mastectomy I really had no idea what my body would look like after surgery and nor it seemed did my family or friends.

I am excited, if a little daunted, at the prospect of travelling to Edinburgh at the end of the month to meet with the artist and have a photo shoot with a view to some breath taking paintings being created.

The Project is looking for more ladies willing to pose for paintings and for artists willing to paint! Support in any area would be very much appreciated, promotion, creative ideas, exhibition space, admin etc. It is hoped that we can launch a small exhibition in Edinburgh and Aberdeen and gain some media and charitable coverage. Watch this space!
Please support Breathless-Breastless Project by liking and sharing our Facebook page.

Wednesday 1 May 2013

Deja Vue


“Have you been here before?” “Oh yes.”
The deja vue was never going to be easy. But surely the nurse should have known I had visited the breast clinic on many occasions before?

Here I was, once more, sat within the same four white walls, on the same bright blue chair, watching the same hands tick on the clock, the same blue door (made me smile, it was almost the same colour as my recently painted hen house!). The blinds were shutting out the sunshine and blue sky just as they had done on results day last year, so I took the liberty of opening them just enough that I could see the sky reflected in the wall mirror opposite me. The familiar box of tissues sat on the desk in readiness for all those tears that are shed in this room, when lives are turned upside down.

“What can we do for you?” had she not read the correspondence or notes? So I read from my list, giving her a copy for the file just to be sure that nothing got missed.

It was all very swift with no time for questions. Didn’t anyone want to check that my iron count was back to normal, no blood test nor a check of my blood pressure? What would happen if gynaecology find out that it is the Tamoxifen effecting my menstruation? (Although not common, Tamoxifen can cause thickening of the endometrium and hence problems with menstruation). So, after weeks of waiting I was no further forward other than to now be waiting for another appointment to see the gynaecologist. Why I could not just have been referred directly to gynaecology in the first place I do not know.

I drew strength from last week’s forum and all those other ladies who have also experienced this matter of fact, less than satisfactory treatment.

My consultant said she would arrange my annual mammogram for when it is due in June, gosh, that came round quick, a year in June since this journey began. Well for what it’s worth anyway, given that the first mammogram only picked up an unclear fog and nothing that they were too concerned about!

For now I put the whole thing out of my head as best I can, managing my time table such that I am close to home during my period. The gynaecology appointment is bound to come through for when I am on holiday in June or July!

Friday 26 April 2013

Making a Difference


As I put the keys in the ignition, I was already fighting back the tears. There were six ladies at the research Focus Group. Five cancer patients and one carer. Three ladies including myself affected by breast cancer, one by lymphoma and one by bowel cancer. Three ladies had a terminal diagnosis including the two other breast cancer patients. I considered myself very very lucky. However, as personal stories unfolded, I realised it was a very fine line between me getting the diagnosis or being sent away home, having been more or less told that there was “nothing wrong”. It was down to the nurse at the ultra sound session asking the operator if I needed a needle aspiration, he had said no, not if there’s not a lump. I was ready to walk out at this point as I was clearly wasting everyone’s time. She asked could I feel a lump, I said yes, that was why I was here. She organised the needle aspiration that saved my life.

Sadly I listened to other similar stories, Claire (not her actual name but for confidentiality reasons) had been back and forth to her doctor for three years feeling unwell, then aged 37. At 40 she was diagnosed with advanced breast cancer that cannot be cured. She had, three years earlier, been told by her GP to go home, lose some weight and do some exercise, then she might feel better. Irene went to her GP after her leg swelled up on holiday. She was given water tablets for several months. She was eventually diagnosed with lymphoma. However, as the stories unfoldedH
Janet was recalled following a bowel screening. A polyp was found and she underwent surgery, only to wake up to find she had been cut the length of her abdomen to remove a stage 4 mass from her bowel.

The thing is, cancer is a silent killer. You cannot see it. It’s not like a broken arm. We were six gorgeous ladies sat round the table at the forum, chatting, laughing and shedding a tear or two, but looking by all accounts “normal” and even fabulous, yet three of us would not live for more than what, three years?

The two researchers were keen to hear all about our experiences with the health services, good and bad. This information will be used to educate future professionals with the hope of providing an efficient and better care service. We will be given the findings once all the forums have taken place. From our own group there was clearly plenty of mal practice and lack of care. There had been two official complaints put in about a GP and a consultant. Indeed, I should have reported my own breast care nurse who was largely incompetent in several areas and who I now have no desire to deal with.

The forum wasn’t all bad, although many of the care stories were. As someone said, the treatment we had all received must have been alright as were all still alive! I think some of that was more to luck than judgement though and some of us were more alive than others!

We shared stories of immense shows of support from family and friends, almost an entire family shaving their heads when Debbie started chemo! Nothing but praise for the anonymous Macmillan nurses on the end of a phone who offered valuable help and support to us and our families.

What the forum did for me, apart from drag me down emotionally for a few hours, was it made me realise more than ever, that I have to be in charge of my own life and my own care. With my hospital appointment coming up on Tuesday it is up to me to get my concerns across and to make myself understood and believed. I have had to wait for months for this appointment since first going to my GP. It’s unacceptable. It’s only down to the Macmillan telephone support that I am going at all.

The forum gave us all the chance to have a voice and to make a difference for those in future generations who find themselves swept into the health and care service as we have. For them, for Alice and Maisie, we hope that the NHS will provide a system of care, comfort and quality treatment delivered by professionals who will have the skills, knowledge and the time to care.

Friday 12 April 2013

The Scar Project Video Clip

This is a brilliant video clip about The Scar Project. It contains graphic images of beautiful women.

 I am a huge fan of The Scar Project. I have some ideas about trying to create something similar but with paintings, rather than photographs. I'm putting the feelers out to see if I can get any interest from artists who would like to paint for the project or for ladies who are prepared to model. How amazing it would be to get a small exhibition off the ground! Watch this space!

Thursday 11 April 2013

Spring is in the air!

Despite another sprinkle of snow this morning, I am sure that Spring is in the air! I was delighted yesterday to purchase a fantastic T shirt for the sunnier warmer days that are ahead! I’m developing a good eye for folds and gathers in the right places on garments that might cleverly disguise my mastectomy without the need of always wearing a scarf. I’m very pleased with the jazzy print, ruched top which does not require a prosthesis or scarf! I’m on the look out for some more t shirts to add to my wardrobe! Also on order is a bikini, I had resigned myself to the fact that I would be wearing a one piece going forward and even that has proved tricky choosing not to wear a prosthesis. Most swimwear is padded or shaped, not suitable for my new shape. However, River island have a lovely bikini in stock which has a simple top with folds of fabric over the bust evening out the imbalance. Ideal for a splash in the South African swimming pools that I will be heading for before very long!

It was great to get in the gym again this week, I’m swimming regularly, a couple of times a week but I haven’t had the energy for much more than that recently. I was very happy to manage 20 mins on the running machine, 5 walking and 15 running, albeit at a somewhat slower pace that I was used to this time last year! I endeavour to continue with that!

 It was suggested to me that I buy a home blood pressure kit as some of my symptoms could be due to low blood pressure. Having tested myself every morning over the past 5 days an interesting pattern is emerging, of steadily rising blood pressure together with steadily rising energy levels! At its lowest, I was reading 97/70 increasing to 118 / 72 today. All within “normal” ranges but clearly some fluctuations. I had good energy levels on waking this morning, but was feeling rather tired the day of the low reading. I shall keep a record to take along to clinic at the end of the month.

I enjoyed another session of reflexology at CLAN this morning, an hour on the couch relaxing with a foot massage and gentle music! I was also invited to take part in some research to help shape the training of professionals who will be involved in future cancer care and service provision across the North East of Scotland. This is a joint project lead by Robert Gordon University and the University of Aberdeen in collaboration with CLAN Cancer Support. I shall be attending a focus group to share my cancer journey and to voice my experiences on how the professionals worked with me during the journey. It will be interesting to hear the experiences of others in the group, perhaps it will help restore some of my faith in the NHS!


 

Saturday 6 April 2013

An evening of Burlesque!


It’s always a good idea to buy presents for other people that you can also share in! An evening of Burlesque at the Music hall last night was a real treat! My prosthesis remained in the cupboard at home but my “softee” came out to wear under my black sequined cocktail dress, no disguising with cardigans or scarves. Online booking said “dress to impress!” Heels, stockings and little black dress, perfect!

The evening unfolded into a fabulous cabaret show time with gorgeous girls, feathers, flames, tassels, sparkles, hoops, tricks and much more! The hostess with the mostess had us all laughing, relaxing, cheering and generally making lots of noise!
I found myself caught out and pulled up sharpe during the first strip tease, being faced with beautiful breasts, curves in all the right places, aware that I will never look like that again, aware that the chances are, at least one of these beautiful girls will end up with breast cancer during her lifetime. A few moments of fighting back the tears that had welled up in my eyes (not wanting any mascara streaks down my face!) I got to thinking I should embrace all that I am and maybe I should find a Burlesque dance class and show that I am very much still all woman, Amazon Warrior that I am!  After all, it has to be easier to swing one tassel than two!

Tuesday 2 April 2013

Good Friday


A week went by with not another word from my breast cancer nurse. I wasn’t surprised but I was left feeling let down by the system once more. My cancer nurse was of little or no support during treatment, unable to get my MRI scan organised and telling me my tumour was tiny just a couple of millimetres which I knew not to be the case as I could feel it. It was 2cm. She also sat on my bed ten minutes before I went down for surgery and asked if I would be going home that evening, I was rather shocked, she said lots of women go home after lumpectomy. I pointed out I was having a mastectomy.

 As a result, I never had much faith in her since! What I did receive yesterday was a letter in the post from NHS Grampian advising me that my annual check-up appointment had to be altered, and they sent their apologies. My appointment is now on 30th April, not the end of September. I had assumed that trying to sort out the present issues was extra to the annual check-up and not instead of! So anyhow, I have four weeks to wait before I go back to clinic to try to get sorted with my present issues. It shouldn’t be stressful or a battle getting someone to take you seriously,yet it always is.

I was overjoyed this morning to hear about the new recovery package being rolled out by the government via Macmillan for cancer patients coming to the end of their treatment. I remember the feeling when I was given my pathology results just two weeks after my mastectomy, relieved that I was node negative and no chemo needed but rather shocked and panicked to be told “ Take Tamoxifen for five years and we will see you in 12 months.” Off I went. Sent home to deal with what had just happened, to cope with the loss of my breast, the effects of it all on my husband and children and to let the scars mental and physical heal on their own. With dissolvable stitches I didn’t even need to see anyone to get those removed!

After a few weeks friends have got over their initial shock and offers of help diminish and things for everyone else return to normal. For the cancer patient, things never return to “normal”. We face a sudden realisation of what has happened to you during the whirlwind of the previous weeks and months, worries that the cancer could return and if it does how do you know, at what point do you see the doctor? Concerns about the drugs, is this normal? With no scans other than a breast scan, the mind is left wondering, how do they know the cancer isn’t anywhere else? I was sent home to get on with it with no support or advice what so ever. Given there is no support for the patient, there is clearly none for the husband or children who are naturally affected by their own concerns and fears.

I have seen my GP twice since my surgery and I still feel I am wasting his time and that he doesn’t really understand. His lack of concern regarding a possible genetic link, my daughters now have three generations, four direct blood relatives, affected by cancer, on one side of the family. My doctor said as it was not on my mother’s side it was nothing to be concerned about. The Macmillan genetics book contradicts all that my GP has said. He was also not in any way concerned about the menstrual flooding, despite the Tamoxifen patient leaflet clearly stating you should see your GP immediately with any abnormal bleeding. I had to ask for a blood test to check my iron count which came back anaemic. My blood pressure has never been taken since I left hospital although it was low for a few days after surgery. I have not been told I need any follow up when the iron tablets finish after two months nor to check how the bleeding is.

At that point I turned to the Macmillan on line and phone service. Caring, understanding people who are trained, experienced and brilliant! I was able to speak directly to a nurse who assured me that my concerns about the bleeding and fatigue were justified and that I needed to see my consultant. I wish I had called them before.

Wednesday 20 March 2013

Macmillan Support


I didn’t know what to do with myself. I had planned a swim and a sauna, but all day, I didn’t manage to drag myself off the sofa and I never found enough energy to get showered or dressed. Sunday, I suffered probably the worst fatigue that I have experienced. I felt incredibly unwell and slept or at least lay with my eyes closed almost all day. It was day four after another bout of menstrual flooding. The usual pattern of recent months, heavy bleeding then a dip in energy levels around day four which generally lasts 3-4 days. After that I seem to bounce back quite quickly.

I felt so ill on Sunday. I wept at one point, not evenfinding the energy to cry properly. I no longer wanted to take all the drugs (Tamoxifen, Mefenamic, Ferrous Fumerate) I didn’t want this awful fatigue, I wished the cancer had never happened and I just wanted to feel “normal”. My head was fuzzy, my body like lead and my lungs breathless. Monday was brighter, although still tired, Tuesday I managed a good walk and today I was just about back to my old self.

If this is how it’s going to be each month then I have to plan my diary and ensure I have four or five days aside with nothing on in case the fatigue hits. My concerns were as to whether this cycle is “normal”. Fatigue affects 25% of women on Tamoxifen but the bleeding is much less common and indeed the opposite is more likely with periods becoming lighter and possibly stopping altogether. My GP didn’t seem concerned although the patient leaflet with the Tamoxifen states any changes in menstrual bleeding should be reported to the GP immediately!

Today I phoned to speak to the on line Macmillan nurse to clarify things and seek some reassurance! Well she clarified things and was very informative and understanding. The heavy periods were not normal with Tamoxifen and I shouldn’t have to live with this pattern of fatigue. She referred me straight back to my own breast cancer nurse at hospital and said I should try to see the consultant. I left a message for my cancer nurse at hospital and she called back this evening. She is planning to get me in to see my consultant. Watch this space!...

http://www.macmillan.org.uk/HowWeCanHelp/Nurses/AboutMacmillanNurses.aspx

Friday 15 March 2013

Restoring Balance & Energy


I naïvely anticipated a quick fix to the anaemia. I was wiped out the day following the four hour walk and I was up and down for the rest of the week. Fortunately things picked up for my trip South with Maisie and although the travelling was tiring I was not feeling that awful fatigue which drags you down, that makes every step and every breath a chore. True to say that it did cross my mind that I could be “ill”, that the cancer could be back,  during these bouts of fatigue that hit me. I’ve never been anaemic and didn’t realise how debilitating it can be.

I’ve been packing my diet with iron rich foods, including an uplifting and refreshing watercress, pear and fresh ginger soup! Two weeks on and the iron tablets seem to be taking effect now and I am waking much brighter and with a lot more energy than of recent weeks.

I am still trying to balance my activities with rest and exercise and to not cram too much into my diary. Maybe a skill we could all do to learn?

The 18th birthday weekend was busy but with time for relaxation as well. Leisurely cocktails at The Savoy, breakfast in bed and coffee breaks from the Oxford Street shopping! A very special time for me and my little girl! Doubly so as it was just the two of us and it was Mother’s Day!  I remember back to my initial diagnosis and the immediate fear that, having celebrated Alice’s 18th the previous year, that I may not see Maisie’s 18th birthday. It was a very real fear but of course as time went on, I realised that even with a worst case scenario there are great things that can be done for breast cancer patients. I was lucky. By the end of August I knew my cancer had not spread and I would not need chemo. It’s six months since my surgery and the scars, both mental and physical are healing well.

Thursday 28 February 2013

Anaemia & Menorrhagia

I will soon start to rattle as my prescriptions increase! I was back at the doctors this week, one to get the breast cancer history on to the girls medical records for their future screening and secondly to mention my heavy periods and the fatigue. I had blood tests done which came back that I am anaemic, hence the bouts of tiredness. I have two prescriptions to pick up, one for the anaemia and one to reduce the heavy bleeding (menorrhagia). I have never been anaemic before, I take a multi vitamin with iron every morning, eat fortified wholegrain cereal for breakfast and am a regular eater of watercress, rocket, apricots and broccoli! A possible side effect of the heavy bleeding and / or Tamoxifen. I hope next week I will bouncing around with renewed energy in time for my weekend to London!

I went to the cinema at the weekend to see A Song for Marion. It was a little too close to home and hit a few raw nerves for the three of us who went, one being a fellow cancer survivor herself. The three of us wept almost all the way through! It was a brilliantly made British movie but far too real and emotional. I’m interested to see what someone who has not had first-hand experience of cancer thinks to it?

I’ve been swimming twice in the last week which I really enjoyed however I suffered on both occasions the following day, with severe shooting pains at the site of surgery. Next swim I will stick to breast stroke and drop the front crawl to see if that helps. I also managed a 20 mins run yesterday in glorious sunshine along the beach. I was fine with the running but shattered in the evening! Today I had a four hour coastal walk with a friend, which was great fun and uplifting. Fantastic therapy – good conversation, fresh air and exercise. Another early night and probably another 10 hours sleep like last night!

Sunday 17 February 2013

Coping with fatigue


My two weeks away have been very restful. I didn’t do anything! I mostly sat in the rocking chair by the fire. I was grateful for the two weeks rest as it seemed quite quick falling back into a busy life after surgery. You are forced to resume normality as life moves forwards and there’s no choice but to “get back to normal”. I’ve had time to think and go over events and have thought about all that happened. I re read all the text messages in my phone from the day before and the day of surgery. That made me cry. It’s part of my healing process, to deal with the pain.

This last week was quite a tough week to get through. The journey home from France did not go according to plan and I finally arrived home after some 17 hours of travelling. Combined with another heavy period, which arrived five days early, I was, needless to say exhausted by the time I got home in the early hours of Monday morning.

Tuesday I was very tired and Wednesday I felt completely fatigued with absolutely no energy or motivation to do anything other than get showered and dressed. I felt weepy, lonely and exhausted.

Thursday I had an appointment at CLAN (Cancer Link Aberdeen North) for reflexology massage. The timing was just right as I really felt the need for some TLC and a chat with the therapist. It proved to be a bit of a “pick-me-up” on Valentines day and forced me to get up and out of the house. I was told it was quite normal to get these bouts of fatigue with all that has gone on physically and emotionally and of course combined with the effects of the Tamoxifen.(Fatigue can be  a side effect for many people). My hormones are taking a bit of a battering! I came out of the centre feeling brighter and went on to have a lovely evening with supper out followed by a brilliant short dance event in town. I was still suffering the fatigue to some degree as I felt every foot step from the car park to the theatre.

What a difference a day makes. Friday morning I woke with bags of energy, as if a switch had been flicked. I spent three hours outside in the garden, general tidying, nothing to heavy, but grateful for the fresh air, milder and drier conditions and a chance to work and stretch some muscles. No fatigue or tiredness and I realised just how unwell I had felt in the early part of the week. This seems to be something of a recurring event just after my period so I need to try to manage my social diary so I can rest if needs be. This was one of the worst bouts I have suffered but no doubt the travelling was something of a catalyst too.

I’m interested in the forthcoming release in March? of the movie “Decoding Annie Parker” http://en.wikipedia.org/wiki/Decoding_Annie_Parker

Based on the true story of Annie Parker, a breast-cancer patient whose belief that her illness had a genetic component led researchers to discover the breast cancer gene BRCA1.