Unknown Number

When 'unknown number' flashes up on the phone there are often a few different reactions that could run through a person's mind.

Should I answer?
Is it a cold call?
It might be important!
It could be my parents...

for me, especially since a false alarm call in September, 'Unknown Number' sent my heart to my throat pounding at a million beats a second. 

It could be another call. 

I'd had a few 'Unknown Number' calls since the first false alarm and most had provoked this reaction. Mostly, they were calls from the hospital arranging appointments or calls from my parents who have a withheld phone number!

At 00:02 on 29th October 2015, my phone buzzed under my pillow. 

Unknown Number.

There was no doubt about this one. 

I answered as calmly as I could, trying to sound as normal as possible. Obviously receiving a potentially life-changing call in the middle of the night requires utmost normality. I listened to the familiar, calming voice at the other end telling me that there could be a match and I needed too get myself ready. I would get another call shortly to let me know how long the ambulance would be. 

I phoned Mum and Dad. Dad answered. 

'Take two', I said.

'Take two what?' was the response... I made it a bit clearer. Dad had just come in from the pub from his guitar club night. Given that the false alarm call had seemed pretty relaxed and had taken over 8 hours from phone call to being sent home, Mum and Dad chose to get some sleep before making their way up.

The transplant co-ordinator called back to say that the ambulance would be with us in an hour and a half. I had a bath, took my time, tided the house and made an attempt to relax. 

Fast forward a few hours and Caius and I are at the Royal Free. Mum and Dad are on the way. 

Keeping warm in Caius' Gilet

I spend most of the time telling myself and Caius that it's not going to happen but somehow things are different this time. We go through the same process of getting into the hospital gown, ECG, chest X-ray, blood tests (17 vials!), cannula. It took us a little longer to get to the hospital this time so the fact that things are moving a bit quicker doesn't seem to indicate much. They tell me I'll be going down at around 7am. Mum and Dad aren't that close but given that it's almost 7, it doesn't feel like I'll be in surgery soon. I'm given some temazepam (a tranquilliser) to calm the nerves. It sends me funny and then to sleep. It's gone 7 and people are talking about 8am being staff changeover time so I'll be heading down near then. Mum and Dad are close. They're nearly here. It's almost 8am and the bed is being wheeled somewhere. Caius is with me holding my hand. I think I was a bit teary by this point. I told Caius to tell Mum not to feel guilty for not making it. I loved them all and would see them soon.

Temazepam induced strangeness!

There were nurses beside me now, holding my hand and comforting me. Caius was there and the doors to theatre were opened. The bed was wheeled in and I had tears falling silently down my cheeks. I was terrified by this point. It was really happening. 10 to 14 hours of surgery lay ahead and who knew what would happen during or after that surgery.

I was slid onto a different bed for surgery. I was hooked up to a few monitors and the anaesthetic was given. Someone held and stroked my hand and comforted me the whole time, reassuring me that everything would be ok. I was asleep.

My pre-surgery tummy...

Just Keep Swimming...

Wednesday 28th October was a pretty good day.

I was off sick recovering from the latest bout of cholecystitis and had decided to take the specialist nurse's advice and go for a gentle swim. I treated myself and went to Hengrove Leisure Park which boasts a lovely pool and also a spa with jacuzzi, steam room and sauna. 

I'd been expecting to pay quite a lot for the combination of a swim and spa but was pleasantly surprised :)

I got myself changed ready to hop into the pool and pulled the box that kept my goggles in from my bag. Now, I am a bit short-sighted. I say a bit. I'm very short-sighted. Once I have put my glasses down, I need someone else to find them. Everything goes super fuzzy and I start walking a bit funny and very slowly so as not to bump into anything. Because of this, I have prescription goggles so I don't end up causing a pile up in the pool. On this day, I pulled my goggle box out of the bag to find it  ... empty! Nooo! I rummaged through the bag and found Cauis' goggles. Nope, don't want those, throw them back in. Rummage again - Cauis' goggles. Calmed down and put the bag on the seat and looked through sensibly. There were definitely two pairs of goggles in the bag and an empty box. Both pairs of goggles belonged to Caius. I braved it and went round to the pool in my glasses with Caius' goggles. It's difficult to explain how weird it is to see things so unclearly. I made my way to the pool and sunk into the slow lane which was nice and wide and there weren't too many people in it. After the first length though, it was clear that the few who were in the lane had no idea how to use lanes for swimming. They were swimming sort of side by side and instead of going up one side and down the other, they were happily taking up the whole lane. This was not going to end well for me as I couldn't see anyone until they were pretty much right on top of me! Thankfully another lane had cleared and was empty but for one person. 

As a youngster, I loved swimming and was pretty good. I trained regularly and competed at regional level. During my initial diagnosis, I was forced to stop training as I was too exhausted. Despite this, whenever I get into a pool with lanes, I get the urge to swim fast. I want to push myself in the pool and each time I want to improve on what I did the time before - a few more lengths in a little less time. Today however, I really had to calm myself down. I was here to granny swim. I always give myself a goal when I go swimming; either a number of lengths or an amount of time. Today it was 30 lengths. On a good day, I could have got through this in probably under 25 mins. On this particular day, it took me 40! But, I had achieved something. I'd got some exercise and felt really good about it. I then thoroughly enjoyed myself by relaxing in the spa. 

This kind of day is something that I would thoroughly recommend to anyone who finds themselves in a similar situation. Swimming is a very therapeutic form of exercise. The warmth and support of the water is beautifully relaxing, especially if you do take the swimming slowly and gently. (The spa afterwards is definitely worthwhile too!)

I spent the rest of the day relaxing and taking it easy yet still found myself pretty knackered at the end of the day. I creaked into bed and once more whimpered my hopes that my phone would ring soon.

Mumma's 'call day' account...

In keeping with the last post, here is a piece by my Mum telling of the experience she and my Dad had on the day of call number 2!

They live near to Plymouth so had quite a trek to get to the hospital and didn't have the advantage of flashing lights and sirens.

The phone call came in just as Rob and I were going to bed. I had been holding a Christmas play meeting in the house and Rob had been to guitar club. As soon as the Phone went and I knew it was Jenni,  I knew immediately what it was. We both knew that we were in no fit state to drive as it was past midnight so we decided to go to bed for an hour or so, we woke bleary eyed and packed a bag each, to tide us over for a couple of days, I don't think either of us thought that it would go ahead after the last aborted mission to London just a few weeks earlier.  We knew that Jenni had arrived at the hospital but had been reassured that nothing would happen for a few hours so we stopped for a coffee on the way to wake us  up and have a leg stretch. We reached Hampstead at I  think,  about 7.30 we had contacted our son Paul in America who had spoken to Jenni to send his love and best wishes and Caius Jenni’s boyfriend has been keeping us up-to-date with what was happening.  We had just arrived in Hampstead, literally less than a mile to the hospital but it was rush-hour and the traffic was at a standstill. Caius had told us that Jenni would be going down to theatre and that she was being prepared, at this point I started to panic because I was frightened that I wasn't going to get there before she went down. I spoke to her on the phone and told her I loved her and we will be there as soon as we could. Rob  dropped me outside the hospital and I ran to the ward but she had gone. I then had to find the theatre. I rushed to the desk and then saw Caius, so I knew I had missed her and that she had already gone down. The tears started and wouldn't stop. It was sheer grief and sorrow at not being able to hold my daughter’s hand. I wanted to tell her how much I loved her and how fantastic this opportunity was going to be for her future. I wanted to tell her not to be frightened and to be reassured that she would see all of our smiling faces  when she came to later that day. I wanted to hold her hand and touch her face for that moment in time when despite all the confidence I had in the team looking after her I was still afraid that I might lose her. I was so glad that Caius had been with her so she wasn’t alone. The nurse came out of the anaesthetic room and told me that Jenni wasn't asleep yet, so I was able to get a message to her and took some comfort in knowing that she knew we were there ready to welcome her back to us. 

We waited for 10 hours, pacing, drinking coffee, nodding off, trying to read . We had regular bulletins telling us that the old liver was out… New liver was in…. She was doing brilliantly … She was in recovery … She was in intensive care where we could go and see her. 

And there she was, a radiant smile on her face, looking tiny in amongst all the drips, lines, drains and monitors, but that smile, I will never forget. She said ‘I love you mummy, so much and I was so worried that you would be upset that you didn't see me, but I know you love me and Caius was with and I'd spoken to  Paul, I was Ok” 

We couldn't believe how awake and lucid she was .

It was clear though that she was under the influence of drugs, namely fentanyl, because she was singing songs and reciting poems the most  memorable being “I wish I was a glow worm, a glow worm’s never glum, 'cos how can you be grumpy when the sun shines out your bum”!

Another point of view

So, I've been a little quiet on the blogging front lately...

Good news! I've been recovering from my transplant which took place on Thursday 29th October. 

I have also been looking to give some alternative perspectives to the whole experience and so have asked a few of my nearest and dearest to write about 'The Call'.

This is the first instalment of those perspectives and comes from my wonderful other half, Caius. 

Me, My Man and our Pup :)

7:59am….

The doors closed behind Jenni and I wouldn’t be able to see her until after the operation. I don’t know where I am, or where to go, or what to do, or who to call. The emotion takes over.

A nurse on her way on to her 8am shift touches my arm and asks if I okay and if there is anything I need. I don’t know what to say. I can’t move.

Rewind 10 hours and Jenni and I are clambering into bed after a regular evening of rest and relaxation for Jenni (recovering from her second bout of Cholecystitis) and dish washing for me post-cooking. We fall asleep curl into one another, Coco at the end of the bed. Silence, peace, content.

Midnight…..

We both wake up to the hum of Jenni’s phone whirring on silent. Jenni answers, I recognize the calm voice on the other end.

Out of bed, hospital bags out of the closet, clothes on the right way round. At least they gave us the benefit of two hours sleep.

The liver is a match, the ambulance is on its way. T-minus 90mins. We’ve done this, we had everything fine-tuned. Jenni opts for a bath whilst I start hunting for the last essentials: iPad, chargers, iPod….. got to load up those audiobooks.

1.30am

The ambulance turns up, we jump in help the cockney driver to drive through Bristol city centre to the motorway, then we both conk out. The next thing we know, we are entering London, driving through empty streets and pulling up at the Royal Free.

3am

We don’t know where we are going, making a bee-line for the ward we went to last time. Redirected to the right ward, checked in.

Everything is different. There is immediacy in everything the people are doing. Tests (17 vials of blood!), scans, questionnaires, plans of action. Is this happening?

5am

It’s going ahead, its happening. I feel excited for Jenni, scared about if things go wrong, anxious about what to expect after the op, alone and responsible with the lack of her parents in the mix (racing past Reading by this time)

Jenni and I take the time to cuddle up on the bed, to take just a moment before this reality becomes real.

They send in some tranquilisers for Jenni to calm her down. This causes her to get the giggles and acted completely loopy and stoned. Hilarious.

6am

They want to take her down soon but are waiting for the 8am shift to start to make the process smoother. 

7:45am

We are off. Jenni is welling up. Fear, excitement, trepidation, missing her parents (who are battling the morning traffic but are so close)

7:55am 

In the lift, on our way to surgery. My hands are shaking, but I keep up the brave face.

7:59am

The take her away from me

Will I see her again?

Silence

8.07am

Jenni’s parents exit the lift. They’ve missed her by 8 minutes! I feel their pain. They couldn’t see their little girl before she left. The nurse that took us down appears from the door and offers to pass on a message. At least Jenni will know we are here.

8:25am

So what do we do now? We have up to 12 hours to wait around. Relocating to the local café we start arranging things. I have a list of appointments to rebook for Jenni, people to notify, friends and family to keep apprised. Jenni wanted me to get in touch with people when and only when she was under the knife.

Rob, Sarah and I all need to arrange accommodation for the next week or so. 

Now at this point I am on fire! The adrenaline is surging and I am Mr Reactive! Ticking off the tasks, making the calls, making sure everyone knows what is going on. When I run out of things to do, I’ve got hours to kill before Jenni is (potentially) out. With Rob and Sarah going out to look at some shops and accommodation, I decide going to work (in the London office) is a good idea.

I actually get a couple of hours of work done, no-one knows what I’m doing there. I don’t mention Jenni. I don’t know why. I guess I wouldn’t know what to say but really I think it’s because if people start getting concerned around me and hugging me I might lose it. I can’t, not yet.

I go to a meeting in the city (rearranged) then head back to the hospital. By now it’s approaching 7pm and we are told we can go in very soon.

Jenni came around and we were allowed in to ICU at 7.30pm. I won’t lie, it was like being on board a spaceship; all futuristic and cool. We scrub up to see our girl.

Cables, tubes, beeps, blips and the hissing of oxygen. People could be terrified by the sight of all that… technology. But all I can focus on is Jenni. She is awake, she is calm, she is beautiful.

She is the most beautiful thing I have ever seen

On the Road to Recovery

Today I finally feel as though I am making some real progress towards feeling myself again. Not quite the pre January 2014 self that was able to manage a full week of work in retail as well as 2-3 rehearsals a week and an aerial silks class but the self that I need to accept that I am until the magic phone call comes.

Whilst I still feel like I am walking around with not only a full-term baby sized spleen as well as a baby sized rock in my abdomen, this is a definite improvement on the 2 baby sized rocks from last week. I probably wouldn't be offended at this point if someone were to suggest I might be pregnant as I am fully aware that I look as though I could be. This probably isn't helped much by the fact that I tend to hold my swollen tummy to stop it from wobbling around uncomfortably!

Back to today and it's successes. 

I managed to drive myself (first time since coming out of hospital last Thursday) to Uni for a couple of meetings with my mentoring tutor and the DSA to discuss ways to make the course work for me. When I applied for the course, my health was looking relatively good and I hadn't had any admissions for over 6 months so I was confident that I would be able to manage. Recent events however, indicate that I might need to slow down a little bit and the University are really supportive with making sure this happens as best as possible. After a discussion with my mentor, we have concluded that whilst I would like to be able to attend the full day of lectures every week, there may not be much point as by the end of the day, little to nothing is being absorbed and I'm pretty done in both mentally and physically. Having taken advantage of the note-takers a couple of times now, it is clear that they are a great help and that I can, and should, take advantage of them. This frees me up to do a bit more study at my own pace and to be able to break lectures up into more manageable chunks. It does also mean that I am likely to find myself a bit behind at all times as it is taking me that bit longer to get through the necessary material. At the moment, I am OK with that. As so many people keep reminding me, my health must come first and I am not intending to be slack on the course and want to achieve a good result at the end of the day and there are ways of getting there without ending up in hospital again! The DSA appointment was helpful and they have suggested and put forward some really interesting software that will help with study at home and at Uni. This has all helped to make me feel a bit more relaxed about the course.

After a good rest at home, and managing to listen to one of my old lectures that has been recorded, I also managed to cook dinner and get out for a twenty minute twilight walk with the puppy dog. Luckily she is good at entertaining herself and spent most of the 20 minutes running in circles around me and tiring herself out. I loved being able to do this and even though my knees are a little sore now, I feel like it is a great improvement on the last few days. Fingers crossed that I haven't spoken too soon and that I don't suffer the consequences tomorrow. I have been sensible and broken the day up with an afternoon break and am now pretty much done for the day so all should be good!

A slightly demonic looking Coco Pup at the end of our evening walk!

Keep Smiling :) 

Home Sweet Home

Woohoo! I got discharged yesterday after over 5 days in the beautiful BRI.

Now it's time for the real recovery to start. The trouble with hospitals is that whilst their purpose is to make people better, the environment really isn't conducive to this. They say that sleep and rest is one of the best things for recovery and yet they are one of the most difficult places to get any sleep at all. During my first night, I was under 2 hourly observations. This meant that every 2 hours a nurse would come round to take my blood pressure, temperature and blood sugar levels. Being stabbed in the finger every 2 hours is bound to wake you up no matter how strong the painkillers! Thankfully this only lasted one night and gradually reduced to 4 hourly. This still meant that every morning at 2am and 6am I was woken up for a sugar test. 

A hospital ward is also never dark and never, ever quiet! I am fully aware that this is for the benefit of the patients as monitoring in the dark is not going to be possible and the noises tell the nurses exactly what's going on and where they need to be most urgently. The liver ward can be a particularly noisy place to be... There are a lot of patients who are suffering from withdrawal or hepatic encephalopathy, both of which can cause severe confusion and make people do some very strange things. Last time I was on the ward, someone smashed a window and climbed out using the fire escape. Nothing quite so extreme took place this time but there were some very noisy patients. The lovely little lady opposite me was profoundly deaf and struggled to communicate but at night she made the strangest noises! I described it to visitors as 'a dying llama'. It was a very strange exhaled bleating noise and whilst it was an entertaining noise, when it's been going on all night for 4 nights, it becomes quite exhausting. At the other end of the ward, there was a gentleman who spent most of the night (and day) shouting. I have no idea what he was shouting about but he definitely wasn't too pleased to be where he was. When you're struggling to sleep because of the noise and goings on, it can be easy to forget that these people are in hospital for a reason and they are not well. Luckily, the nurses are fantastic and even though they are pushed to their limits, they remain calm and caring towards every single patient. I'm sure they go home and have a bit of a moan about some of the things they have to put up with, but I suspect it would be far worse if they kept it all in! I also need to remember that, as a patient, I'm there for a short amount of time and experience far less than what the nurses do day in, day out. I cannot thank them enough for the level of care they provide in such difficult conditions.

Getting back home was such a relief. My puppy greeted me with all the enthusiasm she could muster which was completely overwhelming and almost led to a bit of hysteria as she wouldn't calm down and managed to smack me in the face. I got myself a culpa and snuggled up on the sofa with all the home comforts around me that I could need - tea, biccies, blankets, TV and my snuggly (now calm) puppy dog. Last night, I got a proper full night of sleep and was able to get out of bed when I wanted without having someone turn the fluorescent lights on to take a blood test. All I need to remember now is that I'm not yet ready to run around doing housework, take the dog for long walks or get back to doing 8 hour days at work and that a proper rest is what is needed to make sure that I am completely fit and ready when I do go back. 

Fingers crossed that there are no more of these hospital admissions between now and 'the call'!

Keep Smiling :) 

Warts and all

Yesterday was a bit of a day and I was reminded how wonderful the people around me are.

There had been one rather heavy weight on my shoulders for a few weeks that has finally been lifted.

This needs a bit of back information...

Back in January 2014, I came back from holiday and home to a letter that told me I had abnormal smear teast results. Further investigations were carried out and 'severe dyskaryosis' was diagnosed- basically, there were some abnormal cells in the cervix and these would need to be removed. In March 2015, I had a LETTS procedure to remove the cells which is usually a fairly standard procedure but of course, my body has to make these things a little bit more complicated. Instead of being a standard day case, I had to go as an inpatient and have platelet transfusions and so on to reduce the risk of bleeding. I then had to have a week of work completely resting which I managed quite well for me. 

Once the procedure had been carried out, a repeat smear was done and there were still some small signs of abnormal cells. Luckily this is fairly normal and no further surgery was required, just regular check ups and smears. This is easier said than done and despite being quite clearly written on my notes that I needed to be seen in 6 months, I had to really push to get this done to the point where I had to get the patient and liaison service involved. Everything cleared up and I stopped worrying.

A few days after my false alarm transplant call, I started to get some spotting. I have the Nexplanon implant fitted and whilst spotting can be linked to this, it is usually during the beginning or end of its 3 year duration that this happens and having had two before with no problems, this caused me to worry. When it had been going on for just over 3 weeks, I told the liver nurses and they agreed it should be followed up by the gynaecological team. It was only a day or so later that it s back in hospital and it was discovered that my platelet count had dropped further. This, combined with the infection could have been a cause of the bleeding and so it was suggested that I waited a bit longer to see if it stopped. It was still going a week after being released from hospital and we were once again in the process of contacting the gynae team when I was admitted again. 

Usually, I'm not one for googling symptoms but of course this time I had. That had got me massively panicked and given my 'abnormal cell' history and the fact that I'm immuno-suppressed, I was fearing the worst.

Yesterday, I was booked an appointment at St. Michael's hospital for and internal ultrasound (not pleasant) to establish if the spotting was being caused by anything sinister. After a rather traumatic, anxiety inducing transfer from one hospital to another (you'd think it would be straight forward with them being almost next door to one another), the scans and investigations were complete and I was assured that everything was normal. The relief was completely overwhelming. Finally something that no longer needs to be lingering at the back of my mind each day. 

The to-ing, fro-ing and running late had got me into a right old pickle though and by the time I got back I was completely drained. I arrived back at my bed at just after 4pm. My appointment had been scheduled for 1pm and I was due back at my bed at 2pm for my antibiotics. I hadn't had a proper lunch and so I was not in a good state. As I got back, the nurse told me that I had another scan booked for 4:30 and needed to have a full bladder. At which point the empty water jug was removed from my table but not replaced! By almost 5pm there was no sign of any porter to take me to this appointment and Mum and Dad, who had been with me throughout the ordeal of a day, had to make a move as they were supposed to be enjoying a short break. Just after they left, I asked what was going on and was told that the scan that had been booked was the same as the one I had just been for at St Michaels and had been cancelled. This is exactly what Dad had expected. Caius turned up shortly afterwards and the poor boy got me in a rather difficult mood. Once I'd had a hug and a good cry, I calmed down. He went and got me some decent food which I managed to get done me before the lovely Beth turned up.

There is something about Beth that is so vibrant and happy, there's no way to be miserable near her. We had a fantastic chat and I should think most people were wondering what I was doing in hospital at that point- I think everyone needs a Beth to visit them in these places! Caius came back and gave me some super lovely slipper socks with cute penguins on- they are adorable and just what I needed as my others are worn through! Beth stayed until the last minute and left me feeling so much better than I had been the rest of the day.

I really am so very grateful to have such fantastic people around me support me however they can- I love you all and appreciate every kind word and message from each and every one of my friends. Thank you a million times over!

Keep Smiling :-)

I really am so very grateful to have such fantastic people around me support me however they