We have had a rocky few weeks here due to health issues I felt I couldn't share until I had more information. I apologise for the deatail of this but those who read often know that primarily this is a blog for me to record my ady to day and is like my on line diary. So its far more than you need but it is a record for me to look back on.
On 12th October I attended my routine mammogram. For my US readers, in the UK we are offered screening mammograms every three years after we reach a certain age (40 I think) It was as uncomfortable as usual but done and dusted quickly and it is so good we have these tests offered.
Ten days later I received a worrying letter saying I had to go to the Breast Screening unit on a recall and the letter, whilst detailed about where to go and what to do made it clear that lots of women are called back and it can be for all sorts of reasons and most of the time is nothing to worry about. I should expect to be there for 4 hours and may like to take someone with me. It was a hard wait for another week until that appointment on 31st October.
They were absolutely lovely at the breast screening unit - as our wonderful NHS staff always are. I cannot speak highly enough about them. It was a little alarming when we were first called in that we were taken to the quiet lounge by one of the breast care nurses which immediately put us on edge that this wasn't fabulous news. She explained that the mammogram had shown up some micro-calcification which many women my age had and usually it was absolutely nothing to worry about but they always checked it out further. This calcification happens in the ducts of the breast where cells are so tightly packed together some get no blood supply and calcify. The reason they check it is that these calcifications can stay there for years totally harmless, but sometimes they change and they become malignant. However, even if that happens it is a non invasive form of cancer.
I had five further mammograms including some under high magnification and then I saw a consultant and was given an ultra sound and then, in the mammogram machine, I had a small incision and 6 biopsies taken. At the end, bruised and scared, I was seen again in the quiet lounge and told they had made an appointment for me on 16th November to get the biopsy results but I really should not worry.
Those two weeks were hard as we worried what the results would be but by the time we went we had both convinced ourselves everything was going to be fine.It would be nothing.
On arrival at the breast unit on 16th we were again taken into the quiet room. Now I have a fear of these quiet spaces as it is forever indelibly connected to when I was taken into one and they told me my Mom had died, very suddenly, at 58. So it is an irrational fear, but a fear just the same. So I was already nervous. However, we were both shocked when we went in and there were three different nurses there. We both knew that wasn't normal and didn't look good.
They explained that the biopsy had come back positive, the cells were malignant and I had ductal carcinoma in situ. DCIS. They explained that the cells were not invasive and that it was very treatable. I would see a breast surgeon on 30th November and they would be removed. We were more than shocked and probably didn't ask the questions we should have asked. They were very kind and reassuring and we were told this is ver common (well lst time they said being normal was very common and this was much rarer!) and it would be fine.
We came home in shock and then started to read up on it, both the booklets they gave us and the internet. It is indeed quite common but it is breast cancer and it can become invasive if left. The treatment is usually lumpectomy or mastectomy depending on the size and grade and might be followed with radiotherapy and hormone therapy. We spent the two weeks alternating between 'it will be absolutely fine to its going to be a total removal.
By the time yesterday came and we saw the breast surgeon we had a list of questions but were feeling very optimistic.
The breast surgeon, an expert in her field and the clinical lead for the whole of Dorset, was quite matter of fact and a bit severe, as many consultants are. I think they have to be a bit matter of fact and detatched as they do this all day long and it must be a pretty grim job. Also in the room with us was Paula, my assigned Macmillan nurse who is just lovely and will be my support through every step.
She checked what we knew and then explained I would have surgery to remove the affected tissue. There are three grades of DCIS and sadly mine is the highest grade, grade 3, which means it is more likely to become invasive. She also said that she could not guarantee it wasn't invasive until the operation and that it might be two surgeries as they do the first operation, check the margins and if any cells are found have to do a second operation. So that was an additional worry that it was Grade 3. This means a full course of radiotherapy too. Nasty side effects of that one. Furthermore the malignant cells can be oestrogen positive or negative. Of course, mine were positive, which means I will be on hormone treatment for the next 5 - 10 years. That is the bit that upset me most of all. My mom died aged 58 very suddenly. They believe the heart attack was caused by the HRT she had just started taking as she had undiagnosed angina. Had they known she would not have been given it. As a result I stopped the pill immediately as I didn't want any hormones that were not my own in my body and I refused HRT going through the menopause. So the idea of taking hormone therapy, which has nasty side effects from hot flushes to sickness right through to osteoporosis and blood clots is something that, either rationally or not, fills me with utter dread. Cut bits off my boob, or indeed all of my boob, its OK, but the hormone therapy terrifies me.
She examined me and then we really started on the merry-go-round.
I was told my operation would have been the 15th December but that this day was one of the nurses' strike days. So they would try and get me in on 8th December but it could easily be the 29th December instead. So the delay was terrifying. This was high grade and I might need to wait a month for surgery and, on past form of worst-case scenario at each step of the way, the 29th seemed the most likely. Paula set up an appointment for us on Friday 2nd to go through questions, details and consent and then I was taken to pre-op. I was told to fill in forms and they would set up a pre-op appointment. We were beginning to feel we would be living at the hospital.
However they saw me for the pre-op appointments straight away as the form said the op was possibly 8th December. I had an ecg which was fine but my blood pressure, always low and often struggling to hit 120, was 170/80. I was horrified but they said they would do it again in a few minutes. It was one of the electric machines and it was still high at 165/78. They said it was to be expected as I had had bad news.
When I saw the main nurse she took it the old-fashioned way and it was down to 145/78 which was high but better and she said she wasn't worried about it. I didn't need to have blood tests as I'd had them recently and she could access those records. She said she wasn't concerned and I was clear for surgery.
Off then to find a post operation bra that was front fastening and then home, shocked and more than a little terrified. The best news we had all day came at 5pm when Paula rang - we feared she was ringing with more bad news - to say my operation would definitely be on 8th December, just a week away.
So there we are. It is now offical - and horrible - I have breast cancer but they believe it is unlikely to have spread (you can understand me not trusting that) and is treatable and manageable. Nigel has a bad cold (it's not covid we keep on checking) so I am staying clear of him and after he has been to the shops today we are then isolating for the week to ensure I stay well.
I have been blessed with so many messages from friends and family, offers of help and support, love and prayers. I feel very blessed it was caught so early, very blessed it is being dealt with swiftly and very blessed to have so many people rooting for me.
I apologise if the blog focuses on this journey (I hate that word but it seems to fit) a little too much in the coming weeks, but as I said, it is my record for me so please feel free to skip reading. I promise I will still post pretty scrapping pictures.
