Cancerversary....

Life has been fairly busy in the last month with a mixture of things returning to "normal" interspersed with cancer. Life is definitely now taking the front seat, with cancer pushed to the back seat on the whole.

The news from the most recent set of scans was pretty much as good as it could have been. The delivery less so. On the day of the appointment, I had a phone call from the consultant's secretary to say that he had moved us to the last appointment of the day so that our appointment wasn't rushed. Those of you in the know will know that this is not a good sign. Not good at all. Longer appointments mean bad news and more to discuss. So it was with trepidation that we turned up for the appointment. Another warning sign was that there was a nurse there that neither Stephen nor I had met before. We were duly ushered in. Briony had wanted to come with us and so was fully immersed in an Abba ipod experience. For some reason, she thinks Abba are the best thing since sliced bread. Perhaps it is wrong for me to say that the lyrics "Mama Mia, here we go again" were in my head for all the wrong reasons.

We were sat down and introduced to the new nurse. It turns out she is a new recruit, so nothing to worry about there and will be supporting the Consultant in all of the consultations in future. And so to the scans. You may remember, that as these were my year anniversary scans, there was also a cursory check of all my other organs "just to be on the safe side".

Here's what they found......
1. Nothing new has sprung up in any of my other organs
2. The nodules in my lungs that have been the cause of so much speculation remain unchanged.

Both of these are good things. Very good things indeed!

The next part of the discussion was around what happens next. We will continue with the HER2 antibodies until I have had 18 rounds and then we will stop them. I will then have regular scans for a period of a few months. This will be the acid test. If nothing changes in my lungs, then we can conclude that they have not been cancer all along and have just been something coincidental that we have found along the way. If they grow, then sadly the likelihood is that they are cancer and we will go back onto the drugs for as long as they keep things at bay.

I have been getting a very itchy patch of skin on my shoulder and have been paranoid about my lymph glands so got the Consultant to check both of these. I need to keep moisturising the skin as it is where the radiation from the beam left the back of my body from radiotherapy at the end of June. Nothing to worry about with the lymph nodes, but better safe than sorry.

We have also decided to start another drug called a bisphosphonate. This was something the Consultant was thinking about in any case and me being me I asked before he mentioned it whether he thought it was appropriate. This has a number of benefits. Firstly, because I am in early menopause, I am at increased risk of osteoporosis. My Coeliac disease increases this risk further. Add into that the recent news of my "more damage than expected in someone of my age" spine, then all in all it seems like a top idea. The final reason (and perhaps the most important to me) is that there is evidence to suggest that it reduces the risk of spread of primary breast cancer to the bones. Little by little we are adding in more treatments to ensure that I am reducing my risk of re-occurrence or spread as much as possible, inline with my wishes. The reduction is small, but I'm all about incremental gains these days.

It turns out the reason why the Consultant wanted me to have the last appointment of the day was because my work had contacted him to provide evidence that I was fit to return to work - more on this below, but obviously I was relieved that it wasn't related to anything to do with the scans. Breathe easy Chaffin!

I've been getting my life back on track the last few months and with the exception of perhaps some tiredness am pretty much back to normal. The chemo brain fog has lifted, I can think more clearly and my energy is back. However, I feel I have a far healthier perspective on life these days. I don't get stressed about things as much as I used to and many people have commented that I seem a lot more philosophical and less reactionary than I was before. I wholeheartedly agree with this - cancer has given me a healthy dose of living life to the full if nothing else. Please look around you at what you do have and think about what you would change if you were told tomorrow that you had a life threatening illness and also what you wouldn't. If my situation has any benefits, it is helping others realise what is important without having to go through all this trauma!

One of these things, and an important lesson to Briony has been around body image. I've always taken pride in my appearance, but this has been a life lesson and one I have shared openly with Briony. She has been curious about my scars and my changing body shape. There has been a fantastic video from Idris Elba which for me captures it perfectly - and I'm proud of my flat chested, lopsided mono-boobed look! As Idris says, I have the chest that looks like survival and a strength that cancer couldn't take.

I'm still very keen on having the other breast removed for a whole host of reasons and mentioned this again to my oncologist. He has written to my surgeon (see below) whom I will see for the first of my now annual mammograms. The language in the letter was telling (I see copies of everything)......"Please can you review this lady whom I'm sure you recall"... Oh dear! 

My surgeon is the same surgeon as Beverley Craven's, who has unfortunately just been diagnosed with a re-occurrence. Fair play to her though, she has put off treatment to finish some of the dates of her tour. Top woman! Interestingly, she also wanted the other side taken off after her first diagnosis and the surgeon felt this wasn't the right thing to do. So I think I may have my work cut out.

It's conference time of year for the medical community and I'm delighted to see that there have been some breakthroughs in cancers that are near and dear to my heart. The first is in ovarian cancer, which is what a friend died from a month or so ago. Whilst it is obviously too late for her, it is clearly great news for all of those who are newly diagnosed with BRCA mutated advanced disease. The drug in question reduced the risk of disease progression or death by 70% compared with placebo. This is massive for this group of patients, who traditionally have a poor prognosis.

Other areas that were highlighted were the difficult to treat triple negative breast cancer patients, plus some preliminary data for HER2 positive breast cancer. This is the type that I have. Being honest, I have mixed feelings about this new data. The full data is not available yet and will be presented at another scientific meeting in San Antonio in December. However, on the face of it, I would absolutely have benefited from this new treatment regime, as it looks at patients who, like me, still had evidence of cancer following chemo (before surgery). It significantly reduces death or disease reoccurrence. 

I'm now also a fully trained up member of the Breast Cancer UK ambassador army! I went to the training a few weeks ago in Birmingham and really enjoyed it. I have my first talk in a couple of weeks time - it's about reducing your risk of breast cancer by making different informed choices. If I can help some ladies by making a different then I'm honoured to have had this lasting impact. Watch this space........my story is also going to feature in a small local magazine article, so again I will share this when it comes along.

Yesterday was the first of the now annual mammograms. Slight confusion when I arrived as the radiographers weren't sure whether they could do it with my port in situ (it sits just above my remaining breast). Why is life never simple for me? Quick phone call to a more senior colleague and it was confirmed that it was OK, but just "be gentle". Ladies, I know mammograms are embarrassing, but really, get over it. I know they hurt, but believe me the consequences of not having them done are far worse. Trust me, from someone in the know. That 10 mins of embarrassment could be the 10 minutes that save your life.

I saw my old friend the surgeon who was to deliver the news. I was seeing him privately, so no clues here on whether it was good news or bad (in the NHS if it is bad news you generally see the more senior members of the team). I'm no trained radiographer, but when the radiographer showed me the images of my breast (so I could see how clearly the port showed up) I knew it looked radically different to what I had seen on the screen a year ago.

I was right. The mammograms were fine. He also checked over the scars and my level of movement from the lymph node removal. I can have physio if I want, but it does seem to slowly be getting better. We then moved on to talking about reconstruction. Another blow from the disease that keeps on giving. Originally I had been told (I can't remember by whom) that I would be able to have reconstruction 6 months after the end of radiotherapy. However, it transpires that because I am at "high risk of recurrence" the recommendation is that I wait 2 YEARS!!!!! until I even consider reconstruction. This hurt for 2 reasons. Firstly, I've been banking on reconstruction Feb-March next year. Secondly, although deep down I know I am at high risk of recurrence, I didn't realise it would have these implications and also for so long. There is a complete and utter logic to the recommendation - it you have reconstruction and then have a recurrence then it is apparently a god awful operation for both the surgeon and the patient to have the reconstruction taken out to deal with the recurrence. My surgeon is very experienced but has said that he has only done this about 4-5 times in his career and it leaves the patient in a bit of a mess. The risk of a recurrence is far less if you make it to 2 years without this happening, so hence the recommendation. The fact that I will be living with the very real possibility of a recurrence is tough, but that's where we are. The reality is I have pretty much all of the risk factors for a recurrence (initial tumour larger than 5cm - mine was 8, high grade tumour, spread to 4 or more lymph nodes - I had at least 5, probably more, HER2 positive), but having it thrust in my face put it firmly centre of mind again and I could feel the fear and panic rising up in me again. Time to put my CBT back into play.

We also discussed the second mastectomy. As I suspected he isn't keen. After a bit of discussion, we agreed that I would be referred for genetic testing. There are a couple of reasons behind this decision. Although I have no family history, he does feel that perhaps something has happened with my genes which has caused the problem as there was a fairly atypical cancer pattern and quite a lot more cancer than expected at biopsy (again another reminder and another kick in the stomach). Plus I am HER2 positive, which only accounts for 20% of breast cancer. These results will be used to guide whether he will do a prophylactic mastectomy or not.

So my cancerversary. How does it feel? When is it exactly? Well, it could be any time from 18th November (when I was told it was highly likely it was cancer) to the bombshell dropped on the 28th November that it was in my lungs. Take your pick!

It's been difficult as I've been reflecting on the last year. My life has changed and will never go back to what it was. I have been changed physically and mentally forever. Some of these changes have been positive, others less so. Do I wish it had never happened? Of course I do. I knew I would struggle and so I went on a yoga retreat this weekend, just for something completely different and also to cover the first of the cancerversary dates. Some of the weekend resonated with me, some of it didn't. I had an utter meltdown at one point and as usual, it was the littlest thing that set me off. After one of the yoga sessions there was a relaxation period, where we were asked to put a bolster under our knees and cover ourselves with a blanket. I had a complete flashback to all of my MRIs as this is the position I was in for the brain MRIs. I couldn't handle it as it took me back there so completely and ended up sobbing quietly away to myself for about 10 minutes. I was completely overtaken by the emotions and then moved on to thinking how bloody unfair it all was and how much life had changed. I probably needed to do it, but it wasn't pleasant. 

Following my return to work (after the GP and Consultant had agreed I was fit to return) I have now been made formally redundant. In the year to end all years this shouldn't really be a surprise! This is the first time I have ever been made redundant so am just getting my head around it. I can't say too much more as I've already been reminded of my contractual obligations and things haven't ended on a particularly favourable note. The way I look at it, when the time is right I will find something new. Cancer has put it all into healthy perspective.

Today was treatment 17 of the prescribed 18. And then the waiting begins all over again to see what my body decides to do next.....