Donations Pages

Hi

Apologies for the delay in posting the donations page link to the blog. I had posted the link below onto Amy’s facebook page and of course mine some time ago, forgetting that social networking is not the only place that people would need to find this information.

The donations page can be found here:
http://uk.virginmoneygiving.com/KimSquires

I would like to take the opportunity to give thanks to everyone for the kind words of condolence and all the support the family and I have received. It has provided much comfort over the past few weeks and will continue to in the coming months.

Amy we miss you.

Love to all

Kim

Some final words

I found this late on Tuesday evening and thought it would be good to share.

Though this was, I believe, due to be read out at the service, most of this was captured during the funeral.

It was written just after her last diagnosis and completed 2nd March 2009 at 4.50 in the morning. Now over to Amy …

A few words to my loved ones.
Hope it’s a good party – sorry I can’t be with you. I couldn’t leave without the final word.

I am sure today is a sad day. I would never have chosen to leave you all and my life was pretty wonderful – I wish it could have been longer but that was not meant to be. I’d like you to remember the good times and hope you can find a way to celebrate today as much as mourn. I’m sure looking around the room you’ll be able to tell how many fantastic people were part of my life. I count myself as very lucky to have known you all.

I have too many people to mention, but want to send my deepest love and thanks to my family. Mum and Dad have always put their children first and I was given great preparation for life in the way they raised me. I know that this will probably be the most difficult thing they have ever had to do and I know you will all support them.

Kim, my gorgeous Kim. You are everything I admire – you are incredible. From the moment we met I was blown away by you. Your lust for life, determination, and enormous capacity to love me made you the man of my dreams. I am devastated we didn’t get more time together but you made me the happiest I have ever been. You know what you mean to me.

Friendship has always been one of the most important things in my life and I have so many people that I value. Some friends have been with me a very long time and will have memories of drunken parties and dodgy ex-boyfriends. Others have met me more recently, through work, or through other friends and have played a huge part in my life in recent years. I have the wonderful Claire Stanbury to thank for introducing me to a fantastic group of girls that have become really valued friends.

Toni and Nicky you have absolutely been there for me for many many years. I am so sad I won’t get to see your daughters grow into young women but I know that you’ll always make sure I am remembered.

Since developing cancer, my work colleagues have also become a great source of inspiration and support. Work was always important to me and it was great to work with such good friends, especially during the more difficult times.

The last few years have been a rollercoaster for me and despite some of the hardest challenges of my life, I have also experienced the greatest joys and pleasures. I have got to know myself really well and I have learned a few lessons along the way. I hope you don’t mind if I pass on a few thoughts:

1. Live your life with passion. You don’t know how long you’ve got. If you don’t feel passionate about something, don’t give it too much energy. If you don’t like your job, change it. If you care about someone, show them. Invest your energies in the things that make you happy. Don’t put off to tomorrow things you could do today.

2. Be kind. Don’t judge people too much – you don’t know what they’re going through. Your family and friends are the most important thing you have. Let them know you value them.

3. Value yourself. You are all wonderful people and deserve good things. Don’t put up with people who don’t value you as much as you deserve. Treat your body with respect – it is a fragile vehicle and once it’s broken it’s hard to fix it. Accept yourself. Stop trying to be anything other than you – once you realise all your strengths and stop fighting your weaknesses life is a lot more pleasurable.

Finally, (and it really is final), a few words about how I’d like to be remembered. You will each have your own memories of me. Please keep them alive by gathering together and telling stories about me – preferably over a few glasses of wine. Don’t omit the more embarrassing ones – I want you to remember who I really was. Obviously, I’m hoping there are some about fun times, times I have provided comfort or good advice or helped you in some way but you are allowed to remember the less flattering things too!

Whilst I want to be remembered, my greatest hope now is that you can draw strength from my life and use it in a positive way to make yours better. Perhaps this is doing those things you’ve always meant to do but haven’t got round to, perhaps it is reconnecting with people that are important to you, becoming healthier, helping others. Whatever you choose to do, I hope I have made you stronger in some way. To those closest to me, I know it will be hard to let go, so I hope you can keep my memory alive but also move on and make the most of the rest of your life.

So that’s it. My parting words. Thank you for being part of my life and know that I loved you all.

One Last Hurrah !

As you have guessed this is Kim – (Amy’s Boyfriend for the past couple of years, and recent Husband), writing in place of Amy with none of the carefully crafted English or humour.

A lot has happened of late and so I thought I would take this opportunity to fill in some of the gaps that have opened up over the past few weeks and months.

The panic over the wedding dress continued up until a visit to Monsoon with Mum. There was a little panic around dressings and making sure that there were no leaks as they were being tried on. The panic was heightened by the sales assistant popping her head round the curtain every now and then asking whether everything was OK and demanding twirls.
However Amy found the right dress, which looked fantastic. The rest of the wedding preparation centred around ensuring that we had discrete and adequate dressings to ensure that there was no leakage on the dress on the day. Secondarily, waterproofing the dress to ensure that if there was any leakage so that the dress would remain in pristine condition. As far as finding discrete dressings, thanks to Shane, I did find a number of cohesive bandages, some army surplus bandages which were marketed as absorbing loads, they had an excellent green and brown camouflage pattern but did not match the ivory colour scheme!

First Field Dressing

The district nurses (Lynne, Helen, Julie and far too many others to mention) also did a fantastic job of finding dressings that were colour coordinated and did the right thing for the flight to Colombo, Sri Lanka.
On the night prior to our departure we were up until the early hours of the morning packing and repacking bags, having already offloaded a number of dressing and saline solutions to family to carry for us.
We were up early and loaded into the taxi, having grabbed some brekkie and made a last minute dash to the doctors to grab a new prescription for some medication we had run out of. As it was so early the pharmacy was not open, and we relied on Lynne (the district nurse) to sweet talk and cajole the pharmacy staff to provide the required medication. Unfortunately after all this we had the wrong medication so we went through the process again and once more Lynne battled into the Doctors for a new script and then into the Pharmacy for some new medication. Lynne really was a great help, with Helen calming the nerves as without it the holiday would have been very painful, with no breakthrough medication.
We got to Heathrow in good time, having snoozed most of the way, whilst I finalised some work issues that had crept up overnight.
On getting to the check-in desk Amy reached for her glasses, which we later realised we had left on the bedside cabinet. Despite this we made it through passport control without any real issues, though we had two pieces of hand luggage each and only three arms it was a little fraught at times.

The dressings were a little wet at this stage and as we had a 10 hour flight ahead of us we decided to have a quick change, which was a novel affair in an airport disabled loo. Thinking that there was not much space, but realising that there was far more space than there would be on the airplane, when we needed to change dressings. The district nurses had prepped us well and some earlier planning to create individual packages of gauzes, pads and saline into bags served us well. Needless to say the change on the airplane also went well though far more confined, and squeezing two into a aircraft loo at the best of times is difficult, let alone to change dressings.

So we arrived in Sri Lanka refreshed (lol) @ 6 in the morning expecting to see our Kuoni representative whisk us away in the planned style and luxury that we were expecting. Unfortunately we got blank stares and were asked for copies of invoices – whilst we had to wait for 30 minutes for our Kuoni rep to organise a taxi – which we had to pay for and subsequently get reimbursed.

The journey there was a small culture shock with varied driving practices, we managed to time the drive with Colombo’s rush hour so it was very stop and start. Once we got out of the city and onto the road South we faced a new game of overtaking drivers playing chicken with each other as they honked their horns and hurtled towards each other, missing each other each and every time thankfully. There was no malice or untoward aggression – just a different way of driving, and strangely enough not many cars had dents or dings. But I guess you only have to get it wrong once to have a spectacular accident.
After a four hour air conditioned transfer we got to the hotel and enjoyed iced tea as we sat on the veranda and looked out over the Indian Ocean. The temperature was in the mid thirties & high humidity.

We spent the next few days in an Eco Lodge up river from the Hotel, which was situated in a Mangrove Swamp, which brought with it many excellent benefits, notably the wildlife as we were in a secluded spot with a balcony in the treetops, monkeys were on eye level as were many colourful birds – our favourite – the fly catcher will get posted shortly.

another king fisher

Happy times

Balcony

Unfortunately Amy struggled to take photos of the wildlife as she was minus her glasses and often managed to spot the wild life just prior to its departure, which led to some frustrations. With this in mind and after a little trip in low light we had an epiphany over dinner and I am still not sure why it did not occur earlier. But we did two things, firstly we asked our neighbour to Fedex her glasses over, as everyone was either travelling or about to travel and secondly in the event that these were going to get stuck in customs we decided to get a pair made up in Sri Lanka to ease the situation. In hindsight why we did not do this sooner I do not know – but we got to the optician and Amy was back to seeing the world which helped immeasurably.

We did an evening river boat ride to see the local flora and birdlife and were treated to an exquisite view of some spectacular birds and local sights.
Some of the downsides of the eco lodge were mosquitoes and sharing your living space with lots of little noo-noo’s i.e. bugs, critters and the like. Though I guess you need these to feed the ecosystem – but when being eaten by them is part of that ecosystem it does lose some of its shiny appeal.

Amy unfortunately also started to develop a tender spot on her breast, which was sore to the touch, and therefore to be avoided at all costs.

Having moved to the hotel we spent some time going over the wedding plans, flowers, decorations and of course the Sari. We confirmed the location on the beach after a brief tour of the various options and then had Amy measured for a Sari. Thereafter we truly relaxed and enjoyed the Spa, the heat and the food on offer.

Chillin in Sri Lanka

We were joined by the family and then by our best man Gerald after they had also experienced a number of uneventful, but white knuckle, journeys down to Galle (pronounced Gaul); strangely enough none of these transfers was missed after a rant to the Kuoni local agent about our own experiences at the airport.
The Wedding Day (Thursday the 11th Feb 2010) came around far faster than I think we expected, more than likely due to the relaxed nature of the holiday.

Relax 2

Zen

On the morning of the wedding we had a photographer who came around and took a number of staged photos, demanding lots of cheesy grins and the like, though he did develop an excellent rapport and his photos do look stunning – I will post these as soon as they arrive.

The Sari which we had made out there worked a treat and looked fantastic though did manage to come undone relatively early and so needed a little redressing. This meant that the photographer was left with me as a subject for a brief while and so I have a large series number of photos of me looking lost and forlorn waiting for Amy.

We did a brief photo shoot at Galle Fort and took some nice shots near the top of the fort, promptly coming out of the sunshine and back to the hotel to recuperate prior to the afternoon’s main event.
We prepped Amy well and the dressings were changed prior to getting into the Wedding dress with hair and makeup being redone. Amy’s folks came to give her a hand with the final preparations whilst I went upstairs to spend some time with Gerald getting ready in the ‘Indiana Jones’ outfits with associated hats.
Where the photographer had great rapport the videographer had absolutely none, though did do a great job of capturing some of the key moments and was fairly unobtrusive – which I guess is what we wanted really.
In getting to the ceremony Gerald my best man and I were escorted to the beach by some Kandyan traditional dancers and drummers.

Gerald did a great job of shaking his tush to the beat which was captured on the video. The dancers then left us on the beach with our guests and an elephant as they left to escort Amy and Martin down to the beach.

Elephant is going to Jump any time now

The Poruwa (read podium) was decorated with lovely flowers which people must have been up all night making.

The Blessing

The ceremony was Buddhist and was absolutely lovely, which incorporated the tying of fingers together, to some chanting; handing out bettle leaves to relatives (which was accompanied by some light confusion) and the lighting of a traditional oil lamp. This was followed by some lovely singing by a choir of local schoolgirls.
After the ceremony we spent some time with the registrar on the beach and undertook the legal formalities. This was finished with Gerald guiding us through an impromptu mazeltov.

mazeltov

This left us to enjoy some cake and champagne – prior to getting onto the elephant which was a rather large accomplishment in and of itself. Needless to say the elephant ride was the crowning moment of the day – a rather bony ride but what the trip to Sri Lanka was all about really.

ride the elephant

We managed to get both Katie and Gerald and then Tara and Melissa onto the elephant which was great.
We had a few more staged photographs followed by a dressing change and getting into the Sari prior to the evenings dinner and fireworks. Tara my little sister was not keen on spending too much time with us that evening – whether due to the desire to watch Futurama or whether she had just been on best behaviour for too long that day.

However she came around a little brighter after being away from the table for a while.
Around 9pm we had some excellent fireworks, just before a light spattering of rain – so we headed inside to complete dinner which was punctuated with some excellent speeches from Martin, myself, Amy and Gerald with a cameo appearance from my sister (who did a great job).
After a delicious dessert we ended a lovely day and celebration and headed back to the room.

On Friday, we headed over to Unawatuna Beach with Gerald to spend some quality time with Martin, Margaret and Katie – after a brief tour round the cabana we headed out to the beach, stopping off at a few curio shops with a view to coming back later to haggle.

Having arrived at what I can only describe as a fantastic beach that the Reeces had been enjoying all holiday we found a quiet spot in shade. We took of t-shirts and jumped into the sea to fling a Frisbee around for a short while catching some sun, whilst Amy and Margaret snoozed and looked on.

The beach

Unbeknownst to me I had left my US Dollars in my pocket which was not terribly secure, and following the frisbee action decided to go for a quick swim out to the reef. Swimming along about 20-30 meters out, I saw what I thought was money on the sea floor and went down for a look. Think how I exclaimed at my lucky find, and then swore at myself as I patted my pockets down to realise that MY US Dollars were now being swept away by the current. In a single minded fashion I ducked under a number of times gathering more and more sodden notes before Gerald came over and grabbed grab my leg, as I surfaced I thrust a wedge of notes into his hands, gave a brief explanation and started ducking under again.

Needless to say I think we managed to capture most all of the money and it was well laundered. Margaret and Katie did a great job of surreptitiously drying and counting the notes as they came out of the water, without attracting the attention of the local hawkers who would have loved to have provided some help.
With the panic over we relaxed on the beach with a beer and managed to capture a couple of great shots. And we did add liquidation to the economy with some sarong purchases and linen shirts. On the way back to the cabana we stopped off at a few shops to do some hard bartering for some paintings. I thought I was quite a good barterer, but Mr Gerald put me to shame and when we double teamed – crickey a good price was had.

We had previously sent a few text messages to Mr B to let him know the situation re: the wound / infection and the state of confusion. Mr B passed on some red flags to watch out for and otherwise let us know that we should be OK to continue the holiday.

Saturday saw the photos from the photographer arrive and copies of the marriage certificate. Amy by this point had started to feel drowsier, tired and a little detached. We had an early dinner and said goodbye to Martin, Margaret and Katie who were departing for the UK. We then headed back to the room to get ready for bed and I then continued to pack up our things till the early hours of the morning.
On Sunday morning the detachment Amy had experienced on Saturday was far more prevalent and she was very drowsy. We managed to get out of the room and get the bags to the taxi that was doing the transfer to Yala (national park).

Whilst we were having breakfast I decided to speed things up by going to pay the bill downstairs. When I came back to the restaurant I found Amy getting some bread rolls sliced by a confused chef for toasting. I got Amy to sit down and went back to get some bread on to toast. Whilst going for coffee / juice I noticed Amy getting up to walk out, I intercepted her on the way to the door and she explained that the painful swelling on her left breast had ‘popped’ pointing to the leak.

We nipped into the ladies loo and got Amy settled whilst I ran downstairs to get the dressing kit we had ready for the journey. We cleaned up and took stock of how to dress the new wound. Needless to say we had a frank conversation about heading onwards to Yala vs. heading home. My take was firmly that there was little option but to head home, whilst Amy was very keen to see the leopards that Yala is well known for.

I made the call to the airline and got our flights rebooked for the next available slot – the time then was approximately Sunday 9am. and the flight was due Monday morning 3am.
The hotel was great and put us up in a room for the day as we had the Yala taxi re-booked for an 8pm ride to the airport.

We got to the airport in good time, so we were there around midnight and then had to get through the airport which we managed to do thanks to a porter. Amy had slept most of the way there and was extremely drowsy – though we managed to get through passport control and onto the plane without too many issues.

Amy again slept the vast majority of the way back and was more and more difficult to rouse, to drink, or eat. When she did come around she was confused about where she was and what was happening. Gerald was a star throughout as he happened to travelling on the same flight, though was a little behind us as his taxi had a puncture. However he was able to help with cases and the like. We arrived back in the UK on Monday morning at 10am and luckily were met by my Mom and Tara and the Taxi driver who was there to collect us. Though we were keen stay and chat, as Amy was still very snoozy and quite confused we made a bee line straight for home. On getting home we ate some lunch, changed dressings with a super tired Amy, and then popped Amy into bed. I let Mr B know that we would be there as soon as there was space, which thankfully was Tuesday. Amy then slept until Tuesday morning having spent most of the previous 50 hours largely asleep.

We made our way to Cheltenham and got Amy into the hospital. The tissue viability Nurses came and had a look at the wound under her arm and made some suggestions on dressings. The following few days were quite tense with Amy getting intravenous antibiotics and lots of saline solution. Due to the confusion Amy was experiencing most of the medication was switched to a liquid form which was easier to take, when drowsy.

Martin, Margaret and Katie joined me to keep Amy comfortable during this time. The blood tests that were taken showed abnormally high level of calcium in the blood, due to the cancer leaching the calcium out of the bones. High levels of calcium are known to cause confusion. This was neutralised over a period of 4-5 days with Amy becoming more lucid throughout, though still not managing to hold long conversations and still really only a shadow of her former self.

On the back of Amy’s improvement Mr B removed the implant to increase Amy’s chances of beating the infection. A few days later (Friday 26th) Amy was moved to the Prospect Hospice in Wroughton where she spent the next week. Amy found the move from Cheltenham to Wroughton tough and was very tired by the experience. Initially Amy’s medication was reduced slightly, to hopefully increase her lucidity but still manage her pain. This perhaps seemed to have a positive impact though also created a peak and trough issue with sedatives and pain killers.

Around Tuesday evening / Wednesday morning Amy started to regress – becoming more confused and agitated. The peaks and troughs in the medication became more pronounced the distress and agitation when not sedated were more marked and intense and all recognition when conscious was lost.
Amy passed away in the early hours of March the 6th 2010 aged 34, she was an inspiration to many, with a positive outlook and a beautiful spirit. Definitely loved by all, she will be missed dearly by her parents Martin and Margaret, her sister Katie and, of course, by myself – Kim.

Those of you who have followed this blog will know of Amy’s courage, determination and positive attitude. Her wedding in Sri Lanka was a truly wonderful day which will live on for all those that were there. It was, unfortunately her last ‘Hurrah’, but what a good one !

Hurrah

A couple of weeks of bad health and bad luck…

Hi.

A few people are asking whether I’m alright as the blog has been a bit quiet. Unfortunately the answer is no really, I have had a couple of weeks of really poor health and blogging has been very difficult to fit in. (This could be a longish post as there’s a lot to explain!). Also should mention it’s a little gory in places so don’t read on if that will bother you.

Things were going really well over christmas – my infection seemed to have cleared and the fluid under my arm was getting really under control so I could wear pretty much what I wanted. We were busy planning a nice little long weekend to visit Kim’s Mum and sister who now live in Marbella for his birthday a couple of weeks ago, and I’d started to make a few plans for when I got back, like a trip to go wedding dress shopping, some social days with friends, a small hen do in Bristol with my old colleagues etc.

We headed off to Marbella and had noticed that the fluid had started to increase in volume and frequency a little, but nothing that had alarmed us. Over the course of the weekend however it became a real challenge to deal with. We were managing to have a nice time generally, but my armpit started having major leaks every few hours – as bad as when I was staying in hospital really. This time it really smelt bad too which it had not done up to this point so we were also fairly certain that the infection had returned. One saving grace was I had overpacked on T-shirts and Kim’s Mum was also pretty nifty with the washing and drying. Unfortunately when it came to dressings however we had only brought as much as we thought we needed so we did have to traipse around looking for a pharmacy on a Sunday, and then we were ripped off for some totally over-expensive product compared to what we needed.

Arriving home, we started to make calls to all my contacts from the airport onwards. I ended up with an appointment with Mr B (consultant) at the hospital the following evening and Helen promised to come and see me first thing on Tuesday morning to get me up and dressed as we had not managed to speak to the district nurses. So of course, that day the wedding dress shopping plus my appointment at the opticians got cancelled.

On Tuesday it was just a day of managing it, changing dressings as the need arose, mostly assisted, but when left in the house on my own, unassisted which is really difficult. (Each time usually involves stepping into the shower half dressed, removing the soaking dressing carefully, continuing to leak into the shower directly until the fluid stops running, having a clean up and then getting out before applying saline wash, a healing gel, skin protection cream, and three dressings. None of these can be applied with anything adhesive as my skin is so tender after radiotherapy so we either hold the dressing within a bra (meaning the bra gets soaked the next time the fluid runs = impossible loads of bra washing, so this is only done on special occasions when I want to look nice), or we make a special holster around my neck with a pair of boxer shorts which I then cover over by wearing an old dark T-shirt of Kim’s – very attractive! This all takes quite a long time every time so has become a huge and very boring part of our day.

On Tues pm Mr B confirmed that he did not want to do anything surgical prior to the Sri Lanka trip (2 weeks and 2 days away now!) and would help us to find a solution that meant we could cope out there. He put me straight back on antibiotics and asked us to continue with the dressing regime.

On Wednesday evening further problems occurred when Kim and I both had very upset stomachs after our dinner, went to bed and soon afterwards were hit by all night vomiting and diarrhea. We were already very exhausted but this tipped us over the edge. The next day I was supposed to have friends over but I had to cancel and we spent the day wrapped in duvets trying to recover.

On Saturday I really complicated matters further. Kim had gone to London for the day to try to sort out some wedding stuff (again this was supposed to have included me on a romantic night out but given the circumstances I was unable to participate so another nice thing cancelled). I was in the kitchen late morning when I tripped over a stool leg and fell flat down on the kitchen tiles landing hard on my ‘bad side’. As I have no sensation in my hands and limited feeling elsewhere in my arm I first had to work out whether I’d broken anything. Establishing that I hadn’t and that I wasn’t bleeding I slowly scooped myself off the floor and sat on the sofa trying to pull myself together (stop shaking and bawling my eyes out). I didn’t really want to call anyone so I just sat still for ages before making tea and getting myself into a fairly relaxed state. (In reality I think I was still shaken up for a couple of hours after that).

The afternoon and evening were fine after that but when we went to change my bedtime dressing we spotted the next problem. The fluid (that had been clearing up after starting the antibiotics) was now bloody and all the fluid coming out was pink. Anxiously we texted Mr B and continued to dress me. Kim noticed that the ‘wound’ had changed significantly and we realised that the fall had torn the site significantly, opening up the source of all the fluid.

We coped with this over the weekend, catching up with Mr B by phone on Sunday morning. I was really very bruised and sore from the fall making me very grouchy, waking through the night in pain. The fluid ever since then has remained pink and bloody looking. On Monday the community nurse took a good look and then last night Mr B saw me very late up at the hospital. He is thinking about lots of ideas for solutions. I think there’s three parts to the solution:

1. What’s the best thing to do over the next fortnight
2. What’s the best thing to do on holiday and
3. What’s the best long term solution when I get home?

In the meantime he has changed the way the dressings are treated by sticking a ‘bung’ up inside the wound, rather than just treating the area topically. This does need to be done by a nurse though so it’s daily nursing for me until a new solution is suggested.

I have to say the last two weeks have been both physically and emotionally draining. I called Mum (or Supermum as she should hence be known) up last week and said ‘we aren’t coping, can you come?’ and she arrived on Sunday night. Kim and I are just exhausted. Dealing with the dressing changes on top of the physiotherapy and ‘normal life’ such as cooking etc is filling our evenings so that we’re never in bed before midnight and when the alarm goes at 6am that’s not fun. There is no time for exercise, MBA’s or even watching a DVD from start to finish (even if we could keep our eyes open).

I find myself in tears over the stupidest of things and I think the wedding adds extra pressure knowing that I still haven’t been able to try on a wedding dress yet, don’t have shoes and the majority of my summer clothes won’t work if I have to keep bandages and a dodgy armpit under wraps. On the other hand I’m trying to remain fairly calm thinking, ‘well if I don’t find a dress I can hire a sari, I only need a compact wardrobe that does work and at the end of the day what’s important is the walking down the aisle and saying ‘I do’ bit’.

Hoping with all fingers and toes crossed that we’re through the worst and things will now get better. I certainly feel a little more relaxed now for some reason.

Amy x

Becoming ‘disabled’…the support I’m receiving

So many blog topics and not enough time. There’s a lot going on so I thought I’d keep a few topics separate.

A couple of days after coming out of hospital Helen from the hospice came to see me so that we could put together a list of all the support I would need to get back on my feet and get me in touch with all the right people. This has been so invaluable. Within days I had been contacted by most of the people concerned and appointments had been set up.

Firstly, the district nurses were contacted to help me deal with the dressings and infected area. They now come as often as I need them – sometimes daily, to make sure I have all my dressings on correctly and keep me stocked up with all the gauze, pads, creams and gels that we are getting through. I had hoped that I would not still have need of them by now, but unfortunately the fluid is still leaking – a little worrying as the wedding is less than a month away.

I also had a joint home visit from the ‘two Ann’s’. One was a Physiotherapist and the other an Occupational Therapist. Ann the Physiotherapist noticed that I have a sublux of my left shoulder – basically the bone structure has collapsed slightly due to the muscle not being strong enough to support it. Therefore she advised me to avoid letting it hang loose by my side and to make sure it was supported at all times. She has also given me a series of exercises designed to strengthen my basic arm movement, and to maintain flexibility of movement in my hand. The hand exercises do need to be completed by someone else so we had Ann come out to the house and got through them with Kim afterwards. They take at least half an hour every day but since starting them I do feel like the swelling in my arm has gone down.

The other Ann, the OT, as soon as she arrived at the house started to come up with suggestions of ways to introduce handy solutions I might use to overcome simple problems. By the time she left I had on order a trolley, a stool, a kitchen prep board (that allows me to slice, stir, grate and a few other actions I was struggling with), and we have also booked a trip together to a disability shop where you can try all the gadgets on offer before you buy anything.

Then I had a couple of visits from Karen, a ‘family support advisor’ who has been helping me to understand the process of applying for disability benefits. This has actually become very crucial as my primary motivation for receiving a disabled status is that I wish to qualify for the ‘Motability’ scheme – allowing me access to an adapted vehicle for one handed driving. In order to apply for this I need to be accepted as qualifying for Disability Living Allowance on the highest rate. Karen has helped me put the form together for this – which I have found quite a depressing process. The whole form is worded in such a way as to describe all of the things you can’t do, need help or support with. I prepared a draft version of the form before Karen came over and when she went through it with me she really challenged me to re-think a lot of it, to emphasise the amount of disability I need to overcome. I found this upsetting at the time – it made me realise just how much I was struggling with everyday tasks and how much time all the additional physio/dressing activity etc was taking. Anyhow, the form is now in the post and I’ve been told it could be 11 weeks before I hear anything so I should just forget about it until then.

That’s all the main contact so far but I do have a trip planned to go up to the hospice next week and see what on-site experiences are available that I want to tap into. They are starting a creative arts group that I might be interested in, also I wish to try the complementary therapies. I’ve decided to be open minded about what’s on offer as my initial reaction to an invite to daycare was to imagine lots of little old ladies dribbling into soup, but I am reassured it is a lot more exciting than that!

White Christmas…(or how to make yourself as stressed as possible at an airport)…(OR CONGRATULATIONS Katie and Diarmid)

Christmas Day 2009

I’m pleased to report Kim and I have now COMPLETELY vegged out and are enjoying a truly relaxing christmas after what has felt like a very stressful few days (Make that weeks/months/year?!).

We crammed a lot into the last few days and made some silly decisions looking back that didn’t help.

Last weekend was really fun but we did burn the candle at both ends making us completely frazzled for the week again! Gerald came over on Friday night and after a nice dinner and drinks we decided to put on out new X-box ‘Lips’ game – it’s basically a home karaoke that we have had a lot of fun with late at night of late. I think we started at about 11pm and at 2.30am it was me saying ‘boys I’m off to bed now’ that finally stopped the singing! Highlights were Kim and Gerald singing Janet Jackson’s ‘Nasty’ and boogying along to ‘Upside Down’, and Gerald (or Gezluvulongtime as his gamer name was) and I rapping off to MC Hammer and Vanilla Ice.

On Saturday we went over to see Toni, Ben and the girls for dinner and board games which was very lovely and relaxed.

On Sunday we had a lovely call from my sister at lunchtime to tell us her very exciting news that she had got engaged the day before! Diarmid took us all by surprise by whisking Katie on a very romantic ‘christmas date weekend’ in the highlands and took the opportunity to propose whilst he was there.

In the evening one of our neighbours had organised a ‘genius’ social event idea. 7 households in the street each were to host part of a ‘Safari Supper’ – basically you sign up to put one course on and have everyone to your house for half an hour before moving on to the next. 9 houses in the estate signed up and we offered to do Cheese and Port. (Being quite a cheese lover I thought that a)no actual cooking and b) leftovers! would make this ideal for us! As I didn’t know any of the other neighbours than the organiser it was a great way for me to meet people (I’m thinking more social contact and potential lifts etc). On top of that, everyone made their ‘bit’ really special but it felt like low effort compared to hosting a whole party.

The week was jam packed for both of us. Kim was up in Leicester on Mon/Tues and was out to christmas dinner with the boss. I had appointments with the physio, the Occupational Therapist, the family support advisor, a ‘home visit’ from my work and the district nurse coming around daily (I’ll tell you about all the outcome of these in another post). We also realised we needed to get a move on with all the legal paperwork for our wedding and that ended up causing a whole heap of trouble when we realised that the Decree Absolut my solicitor had sent me months ago was a copy and not the original as it did not have a red stamp on it – leading to me running around Bristol on Wednesday to obtain a new copy from the courtroom that we could send off before christmas.

The trip to Bristol ended up being really positive for me though. As Kim still had pressies to buy me we split up for a while and I spent a good couple of hours wandering the shops on my own – great for my confidence as I hadn’t spent any time in public on my own in months and had never had to deal with that situation since my hand stopped working. I met up with Kim in Monsoon where I bought a few things off the rack without trying them on – and was really pleased with the results when I got home. I’d probably have saved a small fortune to wait a few days for more stuff to hit the sales but at least I have a few nice christmas outfits now.

On Christmas eve Kim and I became the luckiest jammiest people I know (payback for some of the shite luck the rest of the year at last!) upon arriving at Bristol airport. For many reasons too detailed to bore you with we were running VERY late (I personally can only take credit we were there at all). The flight was scheduled for 5.30 so the boarding details said last check in at 4.30. At 4.45(!) Kim pulled into the drop off only point, left me with all the heavy bags, a wobbly trolley, one working hand, a sling and very fraught nerves to navigate my way into the airport and beg to be allowed to the front and let through or we would have to drive to Scotland/find another flight!

It was like walking into a beautiful dream when I snuck through Arrivals to find the Departure hall completely empty of all human life except for a row of Easyjet attendants! I walked straight up and said ‘I’m so sorry I’m late for check in and my partner is still parking but I’m hoping you can check me in on the flight to Edinburgh’. A short phone call and she said ‘yes, that’s not a problem’. I started loading the bags on and she said ‘I’m really sorry Madam, the bags are too heavy.’ ‘It doesn’t matter I’ll pay the charge’ I said without hesitation, just relieved that we were getting on the plane. Well it’s £10 per kilo, and you’re 9 kilo’s over so that’ll be £90. Bugger! (regretting adding so many stocking fillers worth a fraction of the price – but at least Mum got her liquorice allsorts and Dad got his wine gums! – I did think about adding a £15 levy for all christmas presents this year) well, I still thought paying and actually catching the plane better than any other option so I was just about to settle when Kim came running in. I was stunned as we’ve always spent ages finding a spot at the airport in the past and he’d only been about 5 minutes.

We whizzed through passport control and got to baggage control. Another potential nightmare – as you know in UK airports you are now required to remove your coats, pull out any laptops, take off all jewellery etc and sometimes remove your shoes. We were completely wrapped up with my sling over the top, and were carrying 3 computers between us. Again christmas cheer seemed to favourably swing all of the airport staff’s demeanour in our favour: Seeing my sling, they kindly didn’t ask me to take any of my outer clothes off. Even when I set the bleep off by forgetting to take the phone out of my pocket, they were happy to gently check me down in my overcoat. Then turning to pick up my bag I saw it had been removed for checking. I thought I was about to enter a lengthy question and answer session on all of the prescription drugs I was carrying, but no, I’d simply forgotten to remove a can of coke and once they’d confiscated that they were happy to send us on our way.

We sped into the departure hall to find Gate 5 still checking in. ‘You do realise we actually paid for speedy boarding?’ I said to Kim! After all that we waltzed up to the front of the queue, to a half empty plane that then even went on to take off 10 minutes early and arrived in Edinburgh half an hour earlier than expected. That is what I call a christmas miracle! As soon as the plane took off I slipped into a state of deep relaxation like I haven’t felt in weeks and have pretty much stayed that way most of the time since then!

Christmas at my parents has been a long feast so far. The new house wowed me when I walked in – it is far more stunning than I had realised it would be and looks like something out of an interior design magazine – Kim and I are thinking of moving in permanently it is so nice! We have finally been able to relax, enjoy being looked after and take time to watch films, play computer games (Kim), walk and play in the snow, take photos and Kim even managed a boxing day run. Of course we both had tonnes of presents. Some highlights for me were my monopod, a new bikini, and some gorgeous fancy make up.

Yesterday was the big event however – Mum had invited the entire Scottish side of the family to lunch and every single one made it – the first time we have all been together (plus all the new fiance’s and babies) since a family wedding 3 years ago. We had two pipers piping quite literally when my cousin Andrew teamed up with my other cousin’s son Niall to show off their bagpiping in the kitchen. My cousin Neil brought his mobile portrait studio and managed a very professional photo shoot in the living room so we’re all looking forward to some lovely pictures at some point soon. Lyn made a mountain of her wonderful Filipino curry to add to the already wonderful feast, but best of all was just chatting to everyone and seeing everyone reconnect after so long. Diarmid and Kim (and Chelsea, Andrew’s fiancée) must have had a lot to take in but both seemed really at ease with everyone. It was funny watching Kim corrupt young Fergus by teaching him to gamble with cards. Katie and Diarmid have also left today so the house is getting quieter still and I’m starting to get a little sad at the thought of going home in a couple of days ourselves.

My health has been really good since we’ve been here. I’m hoping this is the start of an upwards trajectory. My antibiotics finished a couple of days ago and I am still having to wear dressings to manage the leak, but it has eased off a lot. I’m wondering when it will stop. The district nurse will take a swab when I get home and have it sent off to ensure the infection is gone. The swelling in my arm seems to have gone down a little and I think that could be down to the new very simple physio regime I introduced over the last few days that involves Kim doing a lot of manipulation of my hand. That in itself has felt like a big relief creating less general aches and pains.

I do hope you are all enjoying your Christmases too – time to log off and vegetate a little more now!

New Beginnings

Coming home from hospital has been something of a turning point this week. With radiotherapy finished, that’s the end of all ‘treatment’ for now. We’d envisaged that as the start of ‘getting back to normal’. The reality however, with my hand and arm as they are, is that I’m entering a new phase of my life that’s all a bit unknown and scary. I’ve found myself quite tense and my emotions are a bit all over the place, but I am starting to put the pieces together that I need to move forward.

I’m not sure how clearly I’ve explained the situation with my hand because it’s crept up gradually and things are now very severe. Towards the end of chemo I had tingling in both hands and lost a bit of sensation in all of my fingers – a common side effect of the chemo I was on. However, as soon as chemo finished the sensation started to return to my right hand (which is now completely normal again) but not the left, which then got worse and worse. By the time I had my operation back in November it had become clear that the nerves were being affected by whatever was going on in my shoulder and armpit. A big nerve cluster in your shoulder controls all sensation in your arm and hand and the tumour was somehow stopping sensation. We hoped the removal of the tumour would start to see an improvement as it relieved pressure on the nerve cluster.

It got to the point where I could just wiggle my fingertips, and then about 6 weeks ago I lost all ability to move any part of my hand. I have only the tiniest sensation of touch in some parts of my hand. On top of this, my lymphodema has been very exaggerated. This basically means that the hand is about double it’s normal size as it is full of surplus fluid.

My arm is also recovering still from the operation itself – it does have movement down to the wrist but is so heavy with fluid that I find it tiring to carry it around. Luckily when I go out and about I have a velcro sling I can wear to ensure I don’t get too tired. It also creates a lot of problems dressing – both in terms of clothes that actually fit and also being able to dress myself – I have a very limited choice.

I have no way of knowing right now whether I will ever get my nerve sensation back. All of the experts believe it is very possible – the nerves can re-grow if they have been damaged, but the rate of growth is very slow. What has become clear is that we are certainly talking about several months in this condition even if it is not permanent.

What this means for me right now is that I need to focus the next ‘phase’ of my recovery on adapting to live as a one-handed person. There are several aspects to this and this last week has kicked a few things off I’m pleased to say. Helen from the hospice came out on Wednesday morning and we put together a ‘shopping list’ of all the help I would need to get started. She has all the right contacts and they are now all making appointments or calling to get things started. I am about to meet with a physio to deal with the physical side of recovery, an occupational therapist who deals with adjustments that can be made in the home etc to help and a ‘family support advisor’ who can help me work out what official help I can get in terms of benefits (and more important to me with adapting cars and learning to drive again). Additionally, to get me out and about I am hoping to get lifts up to the hospice for some complementary therapies after christmas (reflexology, reiki etc).

I have also had a community nurse visiting me a few times over the last week or so to help me deal with managing the tail end of this infection at home. I still need to wear significant dressings but we have had to be creative in how we apply these as my skin is too sensitive following radiotherapy to use anything adhesive. This has actually resulted believe it or not in me wearing Kim’s boxer shorts around my neck as a sling for much of the past week. Luckily the dressings she brought today should now allow me to stop doing this!

Dealing with the one handedness gets me cross and frustrated, but I have also been encouraged by how much I CAN do. I am slow and clumsy, but decided to make breakfast in bed on Sunday. It took me 45 minutes to make a pile of toast, the tea went cold and then I had to get Kim out of bed to carry it upstairs anyway! It just goes to show really that the motivation is there, I’ll make mistakes and I’ve just got to go at a different pace from the past and take the pressure off myself.

I’ll leave it there and will update when I’ve met some of these new contacts.
Amy

What can I do to Help? The answer = plenty!

Over the course of the year it’s a question I get asked a lot, but never more so than in the last couple of weeks. Many many thanks for all of your offers.  I think that people are looking in at the situation and would like to be able to do some small thing to reduce our stress or feel that they have contributed to helping us through this very difficult time in our lives.

The reality is our everyday life has never been more difficult and demanding than it is right now, so in writing this post I am putting together an explicit ‘shopping list’ of some of the ways your help would be appreciated regardless of whether you can offer a little or a lot!

For those that are reasonably local there is just a huge list of ways you can help, but those of you that are further away have an important part to play too!

There are three main areas I need your help folks:

1. I am currently very isolated. I live in a very small housing estate in the middle of the countryside and cannot drive at all in my current condition. The most generously appreciated help you can possibly offer me right now is to get me out of the house, particularly midweek, either to do practical things or simply to socialise elsewhere and stop me going stir crazy. Here is a list of ideas, big and small where you might help in this way:

• Appointments.  I could do with making medical / hair / beauty appointments – are you able to offer time and lifts to these?
• I really need some new glasses so a trip to an opticians is required – it can be Swindon but I think I’ll get better choice in Cheltenham or Bristol if you can get me there?
• Short notice local stuff – I often need to pick up prescriptions /  see my GP etc.
• Let’s do lunch/dinner – whilst you are VERY welcome to come over to mine, I’d love a change of scenery if you can do the driving!  My shout.
• Wedding dresses – I need a couple of pre-planned shopping trips with a patient friend to try on wedding dresses (monsoon etc).  (Expect tears and tantrums when my big fat arm stops me getting into the prettiest one BUT you might also be there to witness me getting it right too!).
• Less planned shopping trips – I am going to Sri Lanka in the first week of Feb so some short trips to get ready in January would help!  (yes I know it won’t be the best time to find beachwear)
• Wedding make-up – Fancy taking a trip to try on make-up at the beauty counters of a dept store? 

2. Combatting loneliness / keeping me entertained.   Don’t get this mixed up with being bored!  I have so much stuff to do that I don’t want to add to the list.  It’s more that I’m a very sociable person, and the reality is I’m stuck on my own an awful lot of the time now which is not good for my morale.  Kim works very long hours so I’m often alone from the minute I wake up until 8 or 9pm if he’s in Leicester that day (generally 3 times a week) or 6pm if he’s working locally.  As I can’t drive I don’t have much choice in this.  My time with Kim is  precious so when he is around you might find I don’t want to be on the phone with you and will rearrange to talk when he’s busy.  This doesn’t mean I want you to leave me alone in the evenings however.  Kim has a lot of study to do (This will be particularly true in January and February) so I do spend a lot of time in the evenings entertaining myself too.  He would feel a lot less guilty about not spending time with me if he knew I was happy with my friends.  PLEASE don’t wait for an invite (this is it!).  Here are a few thoughts:

There are basically 3 things you can do here:

A. VISIT!, B. CALL, C. WRITE!

A.  Visitors.  As you can see from above I really value visitors at any time during the week.  You might not have seen me or picked up the phone in months – don’t be embarrassed – I would now love to hear from you! 

• If you have little kiddies don’t worry about bringing them – I can handle a couple of hours of them and if they are full of beans toddlers we have a playpark 2 streets away that we can all go to.
• Don’t worry about ‘putting me out’ by coming for lunch.  There’s usually plenty in but if not you can always bring something with you ?  Ignore the mess if you turn up and the house is a tip.  Ignore the fact I have no make up on and am wearing slob clothes if I’m not having a great day!  It is YOU and your company I’m interested in!  (Don’t worry we do have a cleaner, an ironing lady etc so this is not usual state of play).
• If YOU don’t drive either (my lovely Londoners – city living etc).  A taxi from Swindon station is around a tenner if Kim isn’t around to do lifts (it’s only a 15 min journey).  Trains are really frequent.  You are really welcome to stay if it’s too far to get back the same day (or just want to spend more time with me).
• I’d love to have you around after your work for dinner – especially all you old Unite gang – I’m missing all the gossip!  Happy to see you on your own or en masse.  If it is easy for Kim to knock up an extra portion of what we’re having anyway we’ll do that or if not we can order takeaway or I’ll give you a shopping list to bring over!  Don’t worry – we’re learning to make our evening meals low hassle and you will be included in that philosophy!
• Our house is really well set up for overnight guests so you are very welcome to stay the night (even when you have work the next day and need to leave first thing).  We have more than one spare bed and plenty of bathrooms.  Kids can be accomodated too but you’ll obviously need to help us with that one!   

If you do come to visit here are a few ways you can turn yourself into an even more superstar visitor:

• Ask if there is anything you can bring over on the day (in case I’ve run out of milk etc)
• DON’T bring chocolate or naughty foods as gifts as I really do need to cut back on sugar – my life is quite sedentary and I don’t get the opportunity to burn it off so it is not good for my health (the one exception is when I’m actually ill – that’s when I let myself indulge).
• While you are here chatting to me there might be some tricky skittery jobs you can help with – for example this week I need someone to wrap my christmas presents for me – not easy one-handed!  I am coping with putting laundry on but help hanging it out is appreciated etc
• Help in the kitchen is appreciated – esp loading and unloading the dishwasher as I struggle with anything heavy.
• Offer to bring takeaway or even to cook (not talking gormet – but as Kim does ALL the cooking these days I’m sure he’d love a night off).
• If you stay, please offer to strip the bed
• When you leave, check whether I need anything posted or any small errands run.

B.  Call.  If you can call in the daytime or early evening in particular this is when I appreciate it most.  I get bored giving long run downs about my health (hence the blog – so I don’t need to repeat myself over and over – please use it to check up on the basics) so it’s far more fun for me to hear about you – I am interested in your news and gossip, TV, music and film recommends,  I still love talking work I’m afraid so if you want my perspective on anything HR/career etc I’d love to talk things through with you!  help motivate me to eat healthier, good ideas for the wedding, it doesn’t need to be a long chat but it helps me to feel connected to the outside world!

C.  Write.  Well if visiting or calling doesn’t work for you feel free to write – either the old fashioned way or through chat on facebook.  If you see me online send a quick hello and we can have a quick little chat there.  It just cheers me up to have a quick hello sometimes.

3.  The third thing to think about, and this is especially those of you that may be a little further away is helping me to plan some damn good times over the next few months.  I think that once we get back from Sri Lanka as Mr and Mrs in February we will need lots of other things to look forward to and I want to involve you all.  I can’t do anything too physical for a while and I am not really up for anything too boozy but other than that get your thinking caps on – how can we make 2010 lots of fun and manage to overcome the distances? I really want to spend great times with my friends and family.   I’m hoping my health will improve as the year progresses, and I have no idea when I’ll be back at work but best to get some plans in the diary!

4.  Okay I said three, but here’s a few final thoughts of things you might be able to help out with:

If you have any good DVD loans we always appreciate them – do ask in advance though as we have a pretty large collection ourselves (which you are free to raid whilst you are here).

I am looking for some good beach cover ups – if you have any nice kaftans/sarongs/stuff I might want to borrow for my hols to make me look more glam I’d really appreciate the loan!  I am actually really struggling with clothes at the moment – my left arm is so swollen I can’t get into anything tight.  I also can’t really get away with all my usual low V necks right now.  I guess if you think you might be able to help me out at all with clothes loans let me know – I need Trinny and Susannah in my life right now as my usual clothes just don’t work!

I do play computer games from time to time (on my PC) so if you have any loans here too they might be appreciated.

I am interested in developing my very amateur photography/photoshop skills so if this is your thing perhaps you might be able to help me out in some way?

I hope that this helps you to understand that you really can help!  If I think of anything else I’ll add it to the list  – and likewise you may come up with ideas I haven’t even thought of.  I appreciate the offers and as you can see I’m really receptive to them!

Lots of love,

Amy x

My week of fluid infection…

For what was meant to be a week of ‘bedrest’ you would not believe how busy and exhausted I have been most of the time I’ve been staying in the hospital. So much has been going on that I’m going to have to very much summarise or I’ll be here forever.

On Sunday, Mr B did arrive to see me as promised and he said he wasn’t going to do anything at that point other than:
1. Take some swabs of the infected looking fluid to be sent to labs to be cultured and tested and
2. Arrange an MRI scan for the next day to see where the infection might have spread inside me.

As my boob/armpit/shoulder was looking so very swollen and full of fluid his concern was that the infection could potentially be damaging my internal organs, or of course my implant, and he did prepare me that if the scan showed the infection had spread there it would need to be removed. So, as you can see a lot rested on the results of these tests, but at least I wasn’t being thrown into an unneccessary, unconsidered surgery in Swindon!

On Monday the mountainous boob went pop! It was actually a very traumatic experience – faint hearted folk skip this next bit! Basically since I’d arrived at the hospital every now and then the sores that had been leaky had ‘wept’ a bit of fluid and the nappy-like dressings that had been covering the area would fill with fluid. Often this would seep onto the pillows I was sitting on and of course, wet the hospital gowns I have been wearing constantly to save any of my own clothes being ruined. Late in the morning, I felt a leak start so I buzzed the nurse and moved into the bathroom, but instead of the usual output, the flow of fluid got worse and worse and I was standing (with a lovely nurse) with goo just pouring out of me for about an hour, crying my eyes out – it just felt so de-humanising. Jade the nurse actually ran downstairs to get a message to Mr B to see if he would come and help, but he was unable to get away from his clinic so we were left to our own devices.

It did eventually stop, and we applied lots of dressings. I had arranged for Cathy to pick me up to take me over to the MRI, but the hospital changed their minds and decided I needed to go over with a nurse in an ambulance in case there were any further incidents whilst I was there. I’ve never been in an ambulance before so that’s another ‘first’ I can add to my list! (Not a very exciting one really unless you’re tearing along with the siren on – which we weren’t!). I won’t fill in all the details but I had another fluid set-off just before we left which Cathy was present for (as she had come along anyway to keep me company) – after that she really has seen it all!

As I lay down on the MRI scanner I felt the hot liquid in my armpit fill up. I told the ladies running the MRI and we all agreed that as it did not seem to be a bad leak we’d go ahead and worry about sorting it out afterwards. It wasn’t the comfiest experience and when pain started building about 2/3 of the way through I had visions of a repeat of the radiotherapy experience from last week. I managed to get through though, and on exit, the nurse that had come over with me had been given a private room to re-dress my bandages before we headed back.

That evening, both Dr O and Mr B ended up visiting me at the same time. They took my scan results down to Mr B’s office to take a look and came back after Kim had arrived to visit me after work. The good news was that Mr B did not think there was any reason for any surgery this week – he was not too concerned about where the fluid was inside and believed we should continue to allow it to drain naturally. As disturbing as the morning’s major leak had been – I think at least 50% of the fluid had come out and I looked and felt a lot less swollen and pressurised. The docs were keen for me to continue radiotherapy despite the fluid build and so they suggested perhaps I should move over to the private ward of the general hospital so that I could easily go about my treatments. We agreed to get this sorted in the morning.

To cut a long story short, since then the fluid has been draining in a much more controlled and predictable fashion. I didn’t end up moving hospitals as they faffed so long that by the time it became possible, I’d had half the radiotherapy treatments anyway and was very settled in this room and this hospital so I asked to stay. My radiotherapy appointments have been relatively straightforward and I now only have one left to go on Monday. Between Kim taking half days and Cathy being an incredibly flexible friend we have managed all the lifts this has involved.

One of my main sources of frustration was that I went several days without any sight or sound of my doctor. However on Friday evening he eventually made it to see me and spent nearly an hour going over all my questions and concerns. There was news from the lab results that the infection was a bit unusual meaning that the antibiotics he has now eventually prescribed are very specifically tailored to fighting this infection. Again – a good job no rash decisions had been made the weekend before. We are now hoping the draining of the fluid is coming towards a natural end. A decision was made for me to stay in the hospital until Monday at the earliest. I’m not ready to go home until I know that there would not be further large leaks potentially damaging my sofa / bed / clothes etc.

One difficult conversation was around what would happen should I get home, everything heals up and then I noticed the fluid building up again. Mr B did say that under those circumstances he would most likely want to surgically insert a drain and probably remove my implant, (a thought that fills me with dread, even more so given our current wedding plans are so close).

Anyway, I think I’ll leave it there for now – it was a long and windy conversation with a lot more chat about what is going on in my arm and hand but I can come back to that next time. Mr B did make it clear I could come and go from the hospital in the daytime over the weekend so I have been out and about with Kim today but will fill you in on that next time too – we did have quite good fun today.

Amy

The hospice – a quick explanation

A bit of feedback I had yesterday was that mention of me speaking to the hospice had caused a bit of alarm due to obvious associations. I guess as I have been working with them for a while I had forgotten that most people think of hospices for only one reason. In Wroughton, where we live, the Prospect Hospice is actually a large resource centre for lots of people with cancer. I have been in close touch with them since I had the big problems a few months ago when I started to need serious pain medication to deal with all the problems in my arm and shoulder. As my main medical team are in a different county/region, the Palliative team based at the hospice have allowed me to have some of my medical care from up the road (and working closely with my GP). I’ve never actually been into the centre myself but my new specialist Lymphodema nurse is based there, as is my specialist palliative nurse and I’m just being referred to their physio team to get working on my hand.

I may take a trip over there sometime soon because they also do have complementary therapists that work there and I can get free access to some of these! Hope that helps if you were wondering!