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.