Anniversary Musings

There's nothing like an anniversary to make one think and assess a situation. My husband and I are today celebrating 10 years of marriage and it feels wonderful. I have been thoroughly spoilt, I've had the best (but busy) day and I feel completely emotional! And now I guess I have to watch some football thing... :)

Anyhow, the key thing I am thinking is that I want there to be 10 more years and then some. My latest scans showed that the cancer is getting worse, but slowly I think, and the liver is still what we need to be careful of. None of the cancers can be treated or cured but we are going to manage the symptoms as they come and go to ensure I am comfortable and not in pain, can get on with and enjoy life stuff as much as possible and just try to be a little normal! And I think/hope that the fact I am feeling so much better in myself, I'm getting stronger physically and mentally, I can do more and do it more easily and I am getting on with life means more than the scans. I have so many wonderful people supporting me as well which means everything. And so maybe, just maybe, hoping for 10 more years isn't completely unreasonable.

Bisphosphonate-associated Osteonecrosis of the Jaw

I thought I should do a post about my bad experience with bisphosphonates which are bone hardening drugs that help to strengthen the bone (and reduce the risk of fracture), reduce pain in the area and also help with preventing the release of calcium into the bone. The problem I suffered from them is really, really rare and maybe my experience will help someone. It's called bisphosphonate-associated osteonecrosis of the jaw and unfortunately, was the catalyst for the infection that landed me in hospital in February.

Originally, I was receiving a bisphosphonate called permiginate every four weeks. This was given to me intravenously at the hospital and took about two hours. It's not an unpleasant experience and there were no side effects that I noticed - some patients feel a bit flu-y and/or sick apparently. But as I mentioned in this blog post, despite taking it, I still suffered from high calcium levels which ended with my being back in the hospice being pumped full of a different bisphosphonate (Zometa) to reduce them. This particular brand only took 15 minutes to administer and worked really well to reduce my calcium levels, so we agreed to switch to that one from then on.

And then, as documented here, my mouth went wrong; probably around September 2013. I don't think it was anything to do with switching versions of bisphosphonate but part of me does wonder. The bones in my mouth started to poke though the gums at the side and scratch my tongue. I mentioned this to the oncologist who said to go straight to the dentist; the earliest appointment I could get was December. Love those dentists! The dentist had a look and that was when I was referred to the maxilliofacial department.

Luckily, the maxilliofacial appointment for this came through very quickly - to be honest, they have been, and continue to be, pretty good throughout the whole debacle. They confirmed that it was probably due to the bisphosphonate - and also that it had probably been happening for a while, so before the type was switched - and reassured me that it was unlikely to be something cancerous. We also agreed that I would have an operation to smooth out the bone inside the mouth so it was no longer scratching the tongue, but there was not much else that could be done. And there you go, the rest of my experience in this matter is history; the operation triggered an infection and I ended up in the hospital and hospice for several weeks.

In terms of what I had (have?) where the bone pokes through, it's called Bisphosphonate-associated osteonecrosis of the jaw. It seems it's only recently been identified as a side effect and is extremely rare. I spoke to a nurse who had 20 years experience in this area who said she had never seen it. Then I heard one in 500,000 taking bisphosphonates may get it. And that would be me. Yay!  Unfortunately, it's not going to go away and the bone will always be exposed in my mouth, but the maxilliofacial department have done a great smoothing job so it doesn't bother me any more.

So I guess the point of this post is to reassure anyone else who may get it that this disease isn't so bad. Just make sure that there is minimal risk of infection if any oral surgery is needed, especially if one's immune system is compromised like mine. Smoothing the bone has been brilliant and well worth it, despite the subsequent infection. To be honest, if it hadn't been this, would it have been something else?! I also need to be really particular with my oral hygiene, so thorough but gentle brushing, flossing and special mouthwash.

Some Good and Bad News?

Last week was fairly busy with various clinical visits and appointments, but the main ones were with the maxilliofacial consultant at the hospital to look at my mouth and remnants of the infection, and with my oncologist to discuss next steps.

The appointment with the maxilliofacial consultant went really well.  My mouth is 'nice' and the infection looks to be completely gone. He was very happy with progress but is keeping me on his books so if there are any problems in the next six months, I can call them to ask for advice - and then I go see them in October for hopefully a final appointment. So great news there.

On the other hand, the oncology appointment was not so great. I thought the plan was that I would be starting with chemo mid-April to reduce whatever is happening in my liver; the cancer isn't going away, of course. However, with all the problems I have had, she feels that it is not in my best interest to have chemo right now - if ever in the future. My body won't take it and the chemo won't reduce the cancer in my liver enough to justify the side effects and other risks. She is worried that my quality of life will be awful if I go through it and I understand that. In addition, where I have fluid pooling in my body will be where the chemo drugs pool too - and I don't have cancer there! So even if my body could take it, there's no guarantee that the chemo would go to where it's needed and would just attack healthy cells. It was a real shock to be told that my body was in such poor condition; it still is when I think about it. I don't like being properly unwell. So bad news in that respect but good news - no horrible chemo! I've also been taken off hormone tablets which aren't working to reduce anything.

In terms of how the cancer's being managed, therefore, it's continue as we are, managing the symptoms rather than the cancer itself. The bone cancer is manageable still and I don't think I really need to worry too much about that. It's the liver cancer that may be a problem. I'm being sent for some more scans over the next few weeks to see progression, but originally there were just spots of it so fingers crossed it's staying slow.

So, what exactly is wrong with me?

What happened next? Well initially, I was sent home on the Friday night with some crutches.  But early the next morning we had a phone call from the A&E Registrar, telling us to get back to the hospital to get in the system to enable an MRI scan first thing on the Monday.  So we did!  I had a couple of interesting nights in the ward, still pretty much unable to walk anywhere but sitting up, reading my book and just waiting really to see what was happening. But Monday morning, it all kicked off following the scan (or scans; there may have been a CT scan too).

I was laid flat and told to not move.  Turns out I have tumours in my spine which were pressing against it and compressing it, so it was becoming less and less able to support me - hence the fact I couldn't walk.  Without additional support, by bending the spine, it was making everything worse and - worst case scenario - if it all went wrong, I was risking paralysis.  From here, it's a bit of a blur, but I was bundled flat into an ambulance and taken to a bigger hospital with a large oncology department, the same one where I had my chemo all those years ago, so at least I was familiar with it!

While I was there, I spoke to my oncologist who gave me more detailed results of my scan.  As well as the bone and spine cancer, there is some in my liver.  There was possibly a spot in my lung as well but that hasn't been mentioned since, so it may have just been a shadow on the scan - fingers crossed.

So I had five bouts of radiotherapy to reduce the tumours, which seemed to work as well as reducing the pain.  Additionally, I was (and still am) on pretty heavy duty painkillers.  I was also started on hormone treatment to see if that would help to keep things at bay - the cancer, especially in the bone, is manageable for a time, hopefully years.  I also had to lie flat permanently while they organised some sort of back brace for me.  This took about two weeks.  Thank goodness for Smartphones and 3G which kept me in touch with the world!  I must confess, the whole lying flat experience was a nightmare for so many reasons but the love and care I received from friends and family - in person, online, phone etc - kept me sane and positive.  I cannot thank you all enough for that and for the ongoing support since.

This particular hospital experience ended with the finding and fitting of the brace.  As you can see, it was a solid plastic piece of armour!  But it meant I could sit upright and begin to think about being mobile.  So my next step was rehabilitation and so it was back to the local hospital to get walking again...

My original back brace

Diagnosis of Secondary Cancer

Four years ago, in April 2010,  I was diagnosed with breast cancer, at the age of 35. I had a mastectomy, chemo and radiotherapy and I outlined my chemo experience in this blog.  For a while, we thought I'd kicked it. Life continued perfectly, with my wonderful husband and two young daughters. I even got my dream job.  I felt that I had done it, I had 'beaten' cancer and was on the road to a happy and healthy life with my gorgeous family.

About two years ago, we moved house and that's when I started to notice my body wasn't quite right.  My back was a nightmare! But I have always had problems with my back so I didn't think much of it - just kept popping the painkillers and doing what I could. But as the weeks and months went on, this became less and less. Even though we'd just moved, I wasn't able to sort out the house or decorate it as I wanted, as I wasn't physically able. My husband was worried that I had become super lazy!

However, things started to go really wrong about a year ago.  It was snowy and icy and one day, I slipped on the ice during the school run and felt like I cracked my back so it was even worse than before.  From this day, I was finding it more and more difficult to be fully mobile.  Walking became harder and harder until the day after Valentine's Day 2013, when I was unable to walk more than a few metres.  This culminated in a trip to A&E; following X-rays and scans and hurried conversations, it turned out the cancer has metastasised into (or developed into secondary) bone and liver cancer. It's incurable. But so far, it's manageable. So I am living with cancer, and I will live, as long as I bloody can. Things haven't been easy and I will post about what's been happening since I was diagnosed, but this gives a brief background as to how this second round started.  

Suffice to say, it's not been the easiest year.  But whatever happens, I will live with this shit disease. My girls need me, my husband needs me, my friends and family need me and I need them and refuse to leave them any time soon.