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.