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!

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!

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!

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!