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.

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!

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.

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&

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.

Breathless Breastless on Facebook

Support the Breathless Breastless Project on Facebook!

https://www.facebook.com/#!/pages/Breathless-Breastless-Project/164445467028874

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.

https://www.facebook.com/pages/Breathless-Breastless-Project/164445467028874
 

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!