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

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!