Thursday, 24 April 2014

A Happy Easter Post

The last couple of posts have been a little doom and gloom so I thought I would post about the brilliant Easter weekend we had!

Good Friday was fab in that we were able to go to a good friend's house for a meal and catch-up over a few drinks.  It's still slightly nerve-wracking to go somewhere 'new', as we never know how easy it will be to get into somewhere - whether the wheelchair will fit, if there are unexpected steps or if they're too high for me to step over, if there is suitable parking etc etc. But we measured everything and it seemed fine until we discovered I measured the wheelchair wrong!  Luckily we figured it all out so I could use the walker to access her house and actually, this was a brilliant lesson in that, even if it goes a little wrong, we can still manage to resolve it with a little thought and teamwork! A great time was had by all.

The next day we had our first barbecue of the year at home, which is always a favourite of mine, especially when it's combined with several of my oldest and dearest friends and family! This was the first time since I have been back that I have sat in our garden and it was easy to get there and wonderful to be there.  The weather was okay; I'd say typical British BBQ weather (I won't mention getting out the blankets and cardigans...). It was such a treat to be outside with everyone, enjoying gorgeous food, drink and company.

Easter Day was brilliant too.  Loads of chocolate and my mum and sister came over for a meal cooked by my mum.  The weather was appalling so we did an Easter egg hunt in the house, which worked quite well.  So well that we keep finding them now!

And finally, Easter Monday we chilled and got everything ready for back to school for the girls, and back to work for my husband. I've been signed off work for a month to recuperate, so I didn't have anything to get ready.

So despite the setbacks and busy, annoying week early last week, it was redeemed by a fantastic weekend, thanks to my friends and family.

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.

Wednesday, 23 April 2014

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.

Tuesday, 15 April 2014

Thank You

I want to give a big thank you to everyone who has supported me: family, old friends and new. I have had wonderful messages of love and encouragement, offers of help, gifts of equipment and treats and of course there is the funding page. Using the latter as a basis, I made what I hope was a really good donation to the hospice and there will be more to come, from me at the least! I have also purchased several items that have meant that I am able to function more independently and that have helped progress my mobility more quickly than if I hadn't had them. Or even just a few items that make my life that bit easier and more comfortable.

If it hadn't been for my friends and family, I wouldn't have been able to do any of this so well so thank you very much!

Monday, 14 April 2014

Moving On!

Yes, I am moving on, literally!

It's getting easier to stand up, virtually unaided by another person - although I do still need to be raised a little  before doing so and to use my zimmer frame or walking trolley for balance. I'm walking with the trolley, which is much easier and more 'natural' feeling than the zimmer frame - plus I feel slighty less old-lady-ish with it. I really need to get on with pimping it somehow...

But the real treat is that we are getting more and more used to going out in the car; we seem to have got the knack of this really well. We've been out for a few more meals and we had a lovely time at Harbour Park yesterday. It's amazing to be able to do these things as a family again - I missed it so much.

Next steps this week are to check out my infection - or lack of - with the maxilliofacial people at the hospital (tomorrow) and to start to think about chemo with the oncologist (Wednesday). What fun!

Monday, 7 April 2014

A Lady who Lunches

Having been shown how to get in and out of the car the other day, I must confess that so far, we hadn't put that knowledge to the test. Not really sure why. We're tired but there is also an element of worry, that wherever we go won't be accessible for the wheelchair - either in terms of access or that it will be too crowded and we will crash into people.  

However, we figured that today was the day that we would just do it. We phoned the restaurant in advance to book a table and said that I was in a wheelchair - it wasn't a problem (as it shouldn't be, of course).  Totally forgot that the carers were coming at lunchtime so that was a happy surprise, as they were able to help get me in the car too! It was a lot easier than I expected so hurrah for that. The journey was fine too, although it was only about 10 minutes.

Interestingly, it was a little tricky to get into the restaurant itself. The dropped kerbs were badly maintained and bumpy making them hard to get over, and there was a massive sign in the way that we had to maneouver around. I am tempted to send a complaint feedback... But once we were in, it was fine!

Our lunch venue - yum!
The meal was delicious, the girls were beautifully behaved and we had a wonderful time. It's so good to know that we can do it as a family and I look forward to many such outings in the near future!