Onwards and upwards and....

Rest.

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!

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.

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.

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!

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!

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.

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.

Beautiful!

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!

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.