Sunday, 20 July 2014

We did it!

Well, we did it! We had a successful, fun and enjoyable 9th birthday party for my eldest daughter. I am so pleased that we managed it and it hasn't knocked me out too much. Her friends are so lovely, they were no trouble at all and played nicely together and the bouncy castle was, once again, a huge success. The weather was glorious, at least 28 degrees and sunny, despite all the forecasts telling us it was 22 degrees and raining - most odd. And of course, the help from friends and family was invaluable and much appreciated.

The key was and is balance. I know I keep going on about it, but it's been a really hard but interesting lesson. I'm not as fit as I was, my immune system is busted, I tire quickly, my legs don't work much and I need to accept this means I can't do everything I want.  Unfortunately, I didn't make it to Sports Day and so missed everyone and my youngest's races, but I got some recordings of her taking part meaning I didn't feel completely left out. And we spent a couple of days preparing for the party in short bursts of teamwork. And I spent days slaving over the cake... can you tell?!

So, all in all, a great weekend so far! And it looks like someone is about to get another early birthday present (her actual birthday is in the week), lucky thing...!

Thursday, 17 July 2014


Yay, I'm getting there, back to some sort of normal just in time for a heatwave and/or treacherous thunderstorms. Sleep has been the most useful; this week has been the start of my 'lying in' till 9 am two days a week and that has helped massively in both getting enough rest and getting that natural wake-up. So I am moving now to focus on positives once again and get better!
There's definitely a theme developing here...
It's my youngest's Sports Day tomorrow - fingers crossed I can go (and that it isn't cancelled due to heat) but my main goal is my eldest daughter's birthday party on Saturday - with extra fingers and toes crossed we aren't struck down by lightning. However, back up plans to the outdoor party idea have been set in motion....

Both girls are doing fantastically at school, home and play, despite everything, so I am super-proud. And my husband has been and is amazing. And friends and family are wonderful too. ©

And another positive is that I've made another donation to the hospice (via JustGiving) thanks to everyone's generosity as well as get a few things that have really, really helped with my recuperation. ©

Wednesday, 16 July 2014

To overdoing it

What a pain. I've said before about striking a balance and I guess I failed miserably! After such a wonderful weekend, I started to go down quite severely during last week. I think that, as the weekend had been so successful, I was on a roll and wanted to continue, so I did, sorting school, home, family and work stuff out as well as planning to go to the various end of term events scheduled.  And I ended up sick and bedbound on a weekend I wanted to be fully active and engaged. Well done me; still trying to get this balance right, I guess.

Monday, 7 July 2014

What a Fabulous Weekend!

Well, I've gone from needing to sleep, to a good rest and sleep to a fantastic weekend of fun! All in moderation, all balanced, all good.

My mum had friends over from the States so she had a little bash for them on Saturday, inviting a few close friends and it was lovely to see everyone. It was completely coincidental that it was near to 4th July, but a happy one for a double celebration. I got wheeled over to her house and back which was interesting, keeping out of the way of nettles and twigs on the footpaths, but we did it and we'll do it again.

This was followed on Sunday by another lie-in and then my youngest's birthday party. Her actual birthday isn't until August but over the years we have found that people often don't turn up to parties in the summer holidays.  So now we do them for her before the summer term ends, and this was literally the only available date! Again, everything in moderation - we prepped as much as possible the days before, ensured the girls helped out with some of the more fun stuff like the party bags and then 'all' we had to do on the Sunday was finish off things like the catering, decoration and the highly successful bouncy castle! And the cake - all done by my own two hands, oh and Mr Sainsbury's. This is one of the things that I would have done from scratch in the past but the compromise is necessary. And no complaints of course - she wanted Monster High and she got it!

The party was amazing, the children were delightful, my friends and family were perfect. I couldn't have asked for it to go any better so thanks to you all who were there! Having this support, I feel, is another key element and I am very lucky.

I had a fairly decent night's sleep and nap this morning so I'm okay-ish. The antihistamines have arrived so I'll give them a go tonight and fingers crossed they will help. Got another couple of busy weekends on the horizon so I need to recharge as much as I can plus of course there's everyday, normal life stuff too, to be getting on with. It's amusing me that I'm thinking the summer holidays are going to be quiet and give us a chance to keep recovering - surely it should be the other way round?

Thursday, 3 July 2014

And resting

Well, following my post last night, my husband had the great idea of asking the agency for a lie-in today and what a difference it's made! I reckon I will still need the antihistamine but getting enough sleep and waking naturally are clearly key. It just goes to show how the simplest things are often the most important and we need to build on it.

We've got a lot on this weekend and I was worried that much of it would have to be cancelled or at least compromised but I'm hoping this is what I needed to recharge and carry on - albeit carefully!

And hurrah to finding chilled coffee at the supermarket which also helped. Especially with it being Seattle coffee.

Wednesday, 2 July 2014

Onwards and upwards and....


I am so thrilled that I am able to get out and do more, but it's been taking its toll and I need to be aware of that. Apparently everyone has an energy bank and needs to be careful to not use it up and ensure it gets replenished, and I have been on the brink of no energy in my quest for getting on with life! I've not been sleeping well either - could be the weather with its mugginess and prickly heat and waking me up, could be the fact I hate getting put to bed at a certain time and my body's rebelling, could be me thinking too much at night (I'm not worrying/ stressing though). I am also being woken at 7.00 am every morning apart from Sunday which is totally unnatural - I need more 'natural' wakings and lie-ins. So the last couple of weeks have been fabulous with lots of end of term stuff with school and the PTA, work, family outings and brilliant visits but tiring and a new balance needs to be found.

Hopefully, the care agency can help with giving me a lie-in once or twice during the week, with them coming a little later in the morning. They're sorting the logistics of this at the moment and I hope to hear tomorrow or Friday what they can do. I'm also going to get some drowsy antihistamines to take before sleep; the hospice nurse is sorting this for me so I don't rattle too much with my various pills. So please keep your fingers crossed that I can sort these energy levels, get a decent sleep pattern back and carry on as per usual! There's too much I want and need to be doing right now and I don't want annoying tiredness to stop me!

Thursday, 19 June 2014

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.

Thursday, 22 May 2014

Responses to Feedback on Disabled Access

Further to my earlier blog post, on Saturday (17th May) I sent feedback to the three companies that we couldn't access due to having the wheelchair as well as positive feedback to Pizza Express, which had excellent access.  Of these, Cath Kidston came back to me within 24 hours with a personal holding email and I got an automated reply from Zizzi almost immediately. Didn't get anything from Prezzo until yesterday (21st) but it was a personal one.  The more detailed Cath Kidston one came on the 20th.

The gist of the Cath Kidston response was fairly expected in that the buildings in Chichester are old and often listed, so it's limited in what physical adjustments can be made; they've already enquired about a ramp and it's just not feasible.  However, there's supposed to be a member of staff at the front of the store who can help in these situations by bringing out items that the customer wants to look at, go through brochures and take payment. There's supposed to be a sign to this effect as well. Well, we didn't see one and there was no member of staff - but we may have somehow missed these. At least they've thought about it and have a policy, even though it's a bit disappointing in that, if a wheelchair user (or someone with a buggy etc) wants to browse the store, it's not possible.

The Prezzo one focused on the poor level of customer service provided by the staff - someone should have come to help us. They are going to review their training as well as disabled access to the restaurant.  All good words, so I hope they follow through with this. I've also been offered some vouchers to eat there but if I can't get into the restaurant, I don't see how I will use them! They've given me a number to ring though to book it, so maybe this can be resolved at the time, should we take them up on the offer.

Nothing from Zizzi yet though, apart from the automated response so we shall see about that, hopefully soon! Four working days and counting... not sure how good that is really.  And nothing from Pizza Express; even though it was positive feedback, I was hoping for a 'thank you'!  Ah well.

Saturday, 17 May 2014

Disabled Access

We had an interesting day yesterday with accessing - or rather, not accessing - premises in Chichester with the wheelchair. I had a bone scan at the hospital and needed to go in for 15 minutes for an injection, then wait a couple of hours for it to take effect and then go back for the scan. So we thought a spot of lunch in town would be nice as there was no point in going home then turning around almost straight away to return to the hospital.

First up, we tried Zizzi's. Couldn't get in due to a big step up. No signs to say what to do, no staff members paying any attention to help or give advice and husband didn't want to strand me on the pavement alone whilst he went to search for someone. Next up, Prezzo. No step, but massive, heavy doors. Some lovely members of the public tried to help but it was too narrow for the wheelchair to fit through.  Again, no staff came to help despite the kerfuffle, no information to say what we could do and so once again, we gave up.
Step to get into Zizzi's is larger than it seems!
Narrow door - possibly it's a listed building but
why not some instructions about how a wheelchair
could get in round the back or something?
Finally, Pizza Express. Lovely wide doors, flat surface to get into the restaurant, spacious layout once inside and a nice, new, tasty menu.  So we went there.

Well done Pizza Express!
I also wanted to pop into Cath Kidston, but there was a step to get into there too so didn't bother. Anyway, I think there are steps inside the shop plus it's pretty cluttered so, even if we had managed to get in, it would have been a faff to browse.

I don't get it. I thought that it was the law that places like shops and restaurants had to make reasonable adjustments for disabled people to access their premises so as not to be disadvantaged due to the disability. Or maybe I have misinterpreted it and not being able to eat or shop somewhere doesn't count as a disadvantage? But it's like these big chains, which I thought should know better and would want as much revenue as possible from all customers (hello capitalism!), just haven't bothered. A sign or some sort of attention button would work surely and wouldn't cost much? I feel lucky in a way, as I hope the wheelchair is temporary for me - but for loads of others, it isn't. I don't think it's good enough. So I have sent feedback to all four places (obviously positive in the case of Pizza Express).  It will be interesting to see any response, I think...

At least accessing our garden for a lovely barbecue is easy so hurrah for that!

Thursday, 15 May 2014

Checking In

Just thought I would do a post to say that things are plodding along fine at this end.  I've been off work for almost a month now and have been focusing on building up my strength, mobility and confidence and it's been progressing really well. Going out in the car or wheelchair isn't really a big deal any more; my husband and I have got the knack of manoeuvring me about so it's more and more straightforward each time. It would be great if I didn't have to sit in the wheelchair to get about and could rely on my lovely trolley walker, but I don't think that will happen for a little while. In the meantime, I am just enjoying my new-found freedom, even if it does mean I have to sit and be pushed!

It's quite amazing to experience the world from this viewpoint and see just how much things aren't thought about for physically disabled people - things like dropped kerbs being wonky or broken, shops' A-boards in the way on the street and even people who just don't seem to see the wheelchair and act surprised when they nearly crash into it! But on the flip side, there's plenty of ways that things have been thought out properly and we're really appreciating those; I liked this trolley thing at Sainsbury's that clicked on to the wheelchair and we could shop quite easily with it (apart from avoiding the aforementioned oblivious people).

Another brilliant development was that, at the weekend, we discovered I am able to get in and out of bed with my husband's help, and sleep in my back brace. It's not the most comfortable of arrangements, but it does mean that I don't have to have four carers put me to bed at 9.30 pm every single night and wake me at 7.00 am every single morning. What it also means is that, when I have fab friends over for say, oooo Eurovision, I can cancel the carers and stay up late! So we are trying again this weekend and if it is still easy, I may just do it every Saturday night.  Hurrah for being able to manage my own time and stay up on a Saturday!

At least it wasn't nil points for the UK!
The only fly in the ointment is that I am so tired all the time. I assume this is a combination of my body trying to work to get me functioning again but also it's hard to sleep. No specific reason, just general discomfort and me thinking I guess. But it's annoying when I just randomly drop off in the day, especially in public! Need to sort that really, especially if I start to drool....  eek!

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! 

Monday, 31 March 2014

Mother's Day

We had a fantastic Mother's Day yesterday. I was very spoilt with chocolates, flowers and homemade cards from the girls.

My mum then came over and we had a lovely roast at the table, courtesy of the wheelchair and my husband being able to sort things. It's the first time in months that we have been able to sit down as a family around the table, so it was such a great feeling to be able to do that. We also did it ourselves - without the carers - so it's likely that I'll be able to get up with less help, more and more often.  Hurrah! It was certainly one of my best days yet and I'm feeling so positive.

Friday, 28 March 2014

I'm getting more mobile!

I've been home now for just over two weeks and we have been slowly adjusting to everything in the meantime. Every day, the carers come in to get me up, into my back brace and washed/dressed first thing. Then I either chill out on my chair or sort things; have also had lots more visits from professionals to ensure everything is as it should be.  The carers come back at lunchtime to get me standing and I go for a little walk - every day, not a great distance but further than the previous day and for a little bit longer. It's getting easier to stand and walk with support. And then in the evening they get me back to bed and remove my brace.

We've also had some lovely visits from friends and family which is always good, especially when I am sitting up in normal clothes rather than trapped in a hospital bed! And I've managed to do some work which has been brill - both for my employment and for the PTA, which gives me confidence that my brain hasn't melted with everything going on. I hope that next week I can build on this some more.

I have had two really good things happen this week though with regards to my mobility. Firstly, my wheelchair has arrived which means I can get around the house and out into the garden. Technically, it's an indoor chair but can be used briefly on flat pavement so using it on the garden path is fine. I'm also getting better at driving it. Bring on BBQ weather!  And secondly, I learnt today how to get in and out of the car thanks to the OT. This means we can go out this weekend, perhaps for a Mother's Day meal? Or at least down to the beach. Hurrah! She also recommended ditching the zimmer frame and returning to the wheely trolley walker I got last year.

My ride awaits!
So all in all, (literally) small but positive steps forward.

Monday, 17 March 2014

Home Adjustments

Goodness, it's been a whirlwind since I got home on Thursday.  On Friday, we had loads of bits and pieces delivered, including the specialist riser chair which has been a godsend! The carers have been coming as planned and everything with them has been going smoothly, so again, that's fantastic.

Saturday and Sunday were spent sorting things out - or, more specifically, my husband doing so and me making lists.  I also got a hair wash; thanks for the inflatable basin (you know who you are) which worked a treat - clean hair makes a huge difference to how I feel!  I have been overwhelmed by the love and support all my friends and family have given me and, quite frankly, I don't think we'd have managed without it.

Today, I had a visit from the wheelchair service which feels a bit mad. However, it will give me an element of independence that I don't have at the moment - plus will enable me to get out and about to an extent - so it's necessary.  I wasn't very good at driving it though...  Guess it will take some practice!

We are trying to rest as much as we can as well, but with all the things that have been delivered and need sorting, it's difficult.  However, I very much hope things will start calming down now that most things are here, care and medical arrangements are in place and appointments are booked.  I now need to focus on regaining my muscle strength and getting more mobile.

Friday, 14 March 2014

Home Sweet Home

Just a quick update to say that everything went smoothly (ish) yesterday and I am home.

I am so thankful for everything.  The hospice was amazing but I am so happy to be finally back home.

Tuesday, 11 March 2014

Homeward bound?

Today we had a very productive day with lots of things getting organised and/or finalised including equipment, care arrangements, safety issues, transport - so many pieces of a puzzle that needed being put together to get me home. And I do believe that today, the puzzle is almost complete!

Everyone has been totally amazing to get us to this point. And as much as the hospice is wonderful, I do want to be home with my husband, girls and cat. Please keep everything crossed that our scheduled date of Thursday goes ahead as planned!

Saturday, 8 March 2014

Saturday trip home

I had another fantastic visit home today; I was really lucky as apparently the volunteer drivers don't tend to work weekends so it was so lovely that someone said she could take me home and bring me back to the hospice.

Not only is it wonderful to be home with the family, enjoying my home comforts and cuddles, but it was another good opportunity to check what's needed to get me home for good and still be slightly mobile and safe.  At the moment, I'm going home in a wheelchair and having to stay in that for the duration of the visit as I'm not strong enough to stand up and down myself.  However, once we get a specialist riser chair, this will make getting up and down so much easier so I will be more able to shuffle myself around (with help and supervision at first).  This is in the pipeline.
Rise and recline chair
The plan is to get me home before next weekend so fingers crossed we can do this!

Friday, 7 March 2014

Where am I now?

So here I am in the brilliant hospice.  The care and attention to getting me better has been incredible. I've also had some fab visits from dear friends, so many well-wishes and messages and gorgeous gifts.  I feel so lucky to have such wonderful people around me, wherever they are in the world.
When I arrived, I wasn't in a very good way.  Yes, I had managed to stand a little with the hospital physio's help, but I wasn't strong enough or confident enough to do much more.  I can now stand with help and walk/shuffle with the help of the zimmer frame.  I am being looked after holistically - medically, physically and emotionally.  They are also concerned about the whole family - it's not all about me!

I'm just going to take a minute to write about hospice care, as it isn't always what people think it is. The aim is to improve the lives of people who have a terminal illness, however long that may be, and people - such as myself - may need to go in and out for short or longer periods over time.  I've taken advantage of pain control, physiotherapy, occupational therapy, complementary therapies, palliative care and rehabilitation as well as the amazing care received overall from the staff and volunteers who work here.  There's also financial and practical advice and support for the whole family such as respite and counselling.  They try to be almost a home from home - for example, I've decorated the room with photos and drawings the girls have done and I get brought a Baileys once in a while which is most pleasant!  I have a family room with a sofa bed, so we've also had a couple of family sleepovers which were fantastic. Hospice care is free and this one is a charity (I assume they all are?), with most of its funding coming from donations, so everything helps.

Back to the present.... Yesterday the hospice arranged for me to go home for the day. This was the best ever! They've found a wheelchair I can use and so I was transported in their special van back home. Our cat was so pleased to see me! I had a nice long cuddle with her; we've missed each other!

Isn't she gorgeous?
The OT came over to discuss what's needed to get me home and we developed a plan of action, so I am more confident that things will start happening to get me there soon. My husband cooked a lovely lunch and we watched the new Thor movie, which I've been dying to see for ages! My mum collected the girls from school and came over so I also got to see them all which was brilliant. And then I had to say goodbye which is always difficult. But it has meant I am even more eager to get home as it was so lovely to be there with everyone. Patience and time, but I will get there... we're aiming to get me home later next week!

Until it all goes wrong

Just before Christmas, I had another blip whereby the pain was so bad it was hard to move. Of course, it all happened at my work's Christmas do, which I had been looking forward to for months, so I had to leave early.  Typical! So we contacted the GP and my hospice nurse who arranged for another MRI scan to be carried out at the local hospital.  This was done, I spent another night in a ward and then was transferred back to the bigger hospital for another dose of radiotherapy.  Luckily, I was only there for a couple of nights and the treatment did the trick.  This meant I was able to have the Christmas at home I wanted, cooking my perfect meal with my family and presents, food and wine galore.  Fantastic!
Oh Christmas Tree...
However, fairly soon after this, I noticed my legs and feet were getting really puffy.  I had an appointment with my oncologist mid January 2014 who said it was just one of those things that sometimes happens and the treatment is sometimes worse than the cure; I was advised to keep my feet up as much as possible.  Easier said than done! I also got the results of the MRI and a bone scan - the cancer had spread in my bones - but they had forgotten to do a CT scan so we didn't know about the liver.  But chances were, that had spread too. Not a surprise, but disappointing that the hormone treatments weren't 100% working.  It looked like chemo is in the future.

In addition, it turned out that a medication I had been taking to strengthen my bones and help with the calcium problem had done something weird with the bones in my mouth, so I needed to have surgery at the end of January to sort this out.  This was done by the maxillofacial unit at the local hospital, and seemed to be a quick and easy operation despite the fact my jaw was quite painful afterwards.  They said this was normal.

However, none of this stopped us from carrying on as normally as we could but each day was getting harder, especially as my legs became heavier, my mouth hurt and it was hard to eat and I felt more and more unwell.  Despite this, we booked a local holiday at the beginning of February to have a break and celebrate my birthday.  We had a wonderful time and I thank everyone who helped us to go so, so much! We got a disabled lodge for five of us but were upgraded to an even better one in which we each had our own room (husband and I shared though!) with en suite and an outdoor hot tub which was amazing!  The girls loved it! They went swimming and to the indoor playground whilst I relaxed, we went out for some gorgeous meals and outings. But again, each day I was feeling worse and my mouth was being really weird and painful to the point I could barely open it and nearly everything tasted horrible.

On our final day, my legs started bleeding so we got the medics in.  They advised us to go back to A&E - so we did.  We left late afternoon, so we only missed one overnight stay and actually, I think it was better to leave earlier when it was quiet than be stuck in a queue with loads of people and traffic trying to check out at the same time early in the morning.  And lucky we did - when we arrived at the local hospital's A&E, it transpired I had a massive infection in my jaw, presumably caused by the mouth surgery, that was treated immediately that evening.  This was a most unpleasant experience involving local and general anaesthetic and pain, so I won't go into detail, but I ended up in intensive care for a couple of days and then transferred into a ward.  I was there recovering for about a week and a half, with barely enough energy to lift my arms.  And once again, because I was bed bound with heavy legs, my mobility has gone again.  I was getting intravenous antibiotics, so was being poked constantly so cannulas could be fitted - I've ended up with a PICC line this time.  This experience wasn't great but again, the staff couldn't do enough for me with limited resources.  But it was very difficult and, if I'm honest, depressing.

So thank goodness for the local hospice.  One of the doctors visited me and we ended up making plans to transfer me as soon as the infection had cleared, wounds had started healing well and I could move about a little.  That's where I am now and it's amazing, as ever.  The care is superb, the infection looks like it's almost gone, if not completely gone, the wound is looking ok and I am shuffling about as much as I can, this time with a lovely zimmer frame.  It's now just a matter of getting things in place and my health up to scratch, so I can go home.

Thursday, 6 March 2014

And life goes on....

Once I got home, it was time to try to get back to some semblance of normality.  This wasn't the easiest at first.  We had to have my electric hospital bed downstairs and carers coming in twice a day at 7.00am and 9.30pm, which is a little restrictive but necessary.  We also had many, many phone calls and professional visits and appointments to manage - again necessary but a little overwhelming.  But people were doing their best for me and it was (and still is) very much appreciated - everyone was wonderful.  The best bit, of course, was visits from friends and family and it was lovely to catch up in my own home!

Fun at the beach!
I probably spent a month or two rehabilitating, as well as determining a plan of action to get on with life. I made plans with my manager about how to return to work, I joined the school's PTA, I started blogging money-saving ideas. And we did stuff as a family as much as we could.  As long as I was wearing my brace, I could pretty much carry on as normal.

Of course, there were a few blips here and there; my immune system is shot to pieces coping with the cancer, I guess.  The worst was high calcium levels, when calcium from the bone leaks into the blood system, making me exhausted, sick, loss of appetite, lack of concentration and confusion.  These episodes resulted in my ending up in the local hospice who are simply incredible.  They looked after me by giving the medicine and care needed to get me better and they got me home safe and well.  It's the most amazing place and we are so lucky to have it in our area.  It's a charity, so most of its budget comes from fundraising so any donations help!

On the whole, I was getting on with things really well.  I was phasing back into work and enjoying going into the office and seeing everyone - oh, and doing the work too!  We were doing loads of fun stuff as a family and I was being social with friends. Everything was - sort of - normal!

Wednesday, 5 March 2014

Transferring closer to home

Once the back brace had been fitted, I was returned to the local hospital pretty swiftly.  In fact, I think it may have been the same day.  We were very happy with this as it meant less travel for the family as well as being a more familiar setting.  However, by the time I got there, the night shift was just coming on and they didn't quite know what to do with me or where to put me!  So getting settled was a bit of a nightmare: getting the right bed (I need an electric one), the right medicines, being put in the right place - but by the next day, everything was sorted and I was in my own room with my up-to-date, correct drug chart and a perfect bed.

The hospital staff were all brilliant.  They are so kind and caring and, despite being so busy, did as much as they possibly could for me.  They all learnt how to deal with the brace.  At night, I had (and have) to be laid completely flat and log rolled out of it by four people.  I then must sleep straight and flat on my back.  In the morning, I got (and get) log rolled back into the brace and that meant I could start to sit up.  It was really weird at first, having been flat on my back for over two weeks; the dizziness was the hardest to overcome initially.

Once I had got used to sitting up, it was time to start to think about mobilising.  Apparently, one's muscles start to forget to work after just eight hours - which is why legs may feel wobbly in the morning!  I had no idea.  So after a few weeks, my legs were completely gone and I needed the hospital's physiotherapists to help me walk again.  I don't remember how long this process took, from being stuck in bed to being able to sit out in chair.  Apparently it was a few weeks, but to me, it's a bit of a blur.  But with the patience, skill and kindness of the physios, I was finally able to get out of bed and shuffle to a chair!

Sitting out in the chair
From here, it was a matter of starting to properly walk again which took practice each day - but each day, I was walking further and further with the help of my lovely trolley walker.  My first big outing was to the hospital's reception, where we could sit, chat and people watch.  This was lovely after having been stuck in the one room for however long!  And the other thing I needed to practice was stairs - again, which took some time, but I did it.
My trolley walker.  I still haven't pimped my ride.
Once this was under control, we were finally able to start to think about getting me home.  I had a day trip home with the hospital's Occupational Therapist to check what we had, what was needed and how best furniture and equipment could be arranged to ensure I was mobile but safe.  The only hiccup was getting a care agency to come in at an appropriate time with the right number of people to log roll me; this delayed the discharge process for over a week, which was very frustrating but luckily I was allowed day trips home in the meantime.  However, a great agency was found and finally, I left hospital at the beginning of April 2013.  I had been in hospital for seven weeks.

Again, the support I received from friends and family was my lifeline. The visits I received made my days, as well as all the kind messages and contacts via the internet and phone. It all meant - and means - so much to me.

Monday, 3 March 2014

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

Saturday, 1 March 2014

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.

And it's back

Unfortunately, things haven't gone to plan. As such, I'm revisiting and renaming this blog as to how I'm dealing with secondary bone and liver cancer. And how I'm living with it. More to come later.