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The Finishing Line

Written by Susan Fraser – Allie’s Wife

Most of you who read the blog will already be aware that sadly Allie passed away on Tuesday 1st November 2011.  It would be an absolute crime if I did not complete the blog, with the intention of then trying to publish in some tangible form which hopefully will raise some money for the charities Allie held close to his heart:

Friends of Anchor

Scottish Liver Transplant Unit Edinburgh

It’s hard to know how to finish the blog but I think it would be worth outlining what happened from the date of the last blog post on October 17th until the day he passed away.  Allie’s last blog post was a huge struggle for him to write and in fact I was the one who typed it up whilst he dictated to me over the phone.  He simply did not have the concentration or strength to think and type at the same time.  Many of Allie’s posts had been a huge struggle and it often took a long time just to complete a few paragraphs, but his goal was simple, to in his own words”blog it up”

Allie had his last chemo and stem cell transplant and you will know that he was starting to suffer bad side effects.  His concentration levels were next to nothing and he spent most of his time under the hospital bed covers.  This was a sure sign of things not being as they should as Allie never went under the bed covers unless it was night time for sleeping.  His stomach was also very distended and this we were told was as a result of the chemo being brutal to the throat and mouth and had travelled down to the stomach, which was why he was put on the intravenous feed TPN.

Allie was also starting to get extremely confused about things and it was hard for him to speak clearly as a result of the oral pain he was suffering.  It was my birthday on the 21st October and Allie called me first thing that morning but didn’t say Happy Birthday.  Now, you may be thinking that he had bigger fish to fry, but Allie was always thinking of others and this was something he wouldn’t have forgotten to say, even after I mentioned it was my birthday.  Thankfully, for me, he had managed to write my card the previous day which I will always cherish. His morning phone call conversations didn’t make much sense but I seek comfort in him wanting to call me every morning and being the first on his mind.

Due to Allie’s dedication to the blog and because he was in a state of confusion I decided to write down a few facts and thoughts about what was going on so that he could include in the blog when he was able.  This is what I wrote:

“I thought I would write down a few things about what’s gone on over the past week as Allie won’t be remembering much of it. I won’t be able to do justice to his writing, but I’ll try.

The past week has without a doubt been the hardest week throughout Allie’s treatment. The BEAM chemo has taken so much out of him, it’s been a massive shock to his body and mind. At the moment, he has no idea what is going on, bar being in hospital.  The drugs have impacted on his mental state hugely and he is confused. It’s been a number of days since I have had a coherent sentence from him and it’s not uncommon for him to call me with the most random thoughts. It would be almost funny if it weren’t so serious.

The hope is that it’s just the drugs and the constant sleeping that are causing the delirium. The scary part is that it could be the liver not working properly, or even more drastic. Take today for example, it was the first day I had been in the ward room with him when the doctors were assessing him. They usually do this in the morning when doing their rounds and with Allie being so confused he doesn’t have any recollection of what they have said. Today I happened to be there as Allie had called me in the morning and said he needed clothes  Now usually this would have waited until the afternoon but given his state of mind at the moment and the fact he was pretty distressed and insistent that I came out as soon as possible I went straight to the hospital.  The doctors today were trying to assess him, which is pretty hard going when the patient is out of it. They did a few of the usual checks that try to ascertain whether the liver is working, or failing, so they had him holding his hands out in front of him, asking questions like “where are you”, “what hospital are you in”, “what year is it” It took a little longer than it normally would have but they eventually got there and they seemed to be happy (that’s not the right word but you know what I mean) with that.

At the moment, it’s just a case of taking it each day at a time and hoping he starts to be more alert on a day by day basis. My big test for Allie is asking motorsport related questions, many of you will know that Allie’s memory is shocking at the best of times, but his motorsport knowledge is second to none. Ask him when our anniversary is and he’ll get it right after about 5 attempts, but ask him to tell you the last GP David Coulthard won he wouldn’t even have to think! So, today was a pretty memorable day in the MotoGP with Marco Simoncelli having died in a horrific crash in Sepang. I told Allie the news in my morning visit and he didn’t seem to be quite with it as he was dozing on and off. When I came back in the afternoon for visiting I asked if he could remember what I told him during my visit in the morning about the race, and he remembered, so I think he did pretty well considering. Although his biggest issue with this was if his mum knew – think he was scared she wouldn’t let him on his motorbike again!

Other things that have been going on are the doctors are concerned about his kidneys, it’s the kidneys and liver that they are paying close attention to at the moment. His kidneys seem to have taken a battering from the chemo and aren’t functioning quite as they should. They eventually had to catheterise him (his most hated thing in the world) so they could monitor exactly how they are working. At the moment it seems to be slowly improving and the renal doctors are up daily checking things out.

Luckily the doctors were saying that he hasn’t picked up any infections as yet, which is the most common issue. They also said he seems to be having the most uncommon side effects, erm hello? Have you not been treating Allie for the past year, he doesn’t do normal!! Keep on your toes!

The chemo also led to major pains and sores in the mouth and it’s pretty much red raw, which has then fed down right into his stomach which has as a result became inflamed and swollen – basically he looks pregnant! To try and give the stomach and mouth a rest he is being fed through his line 24/7. Until the swelling in the mouth goes he won’t be able to eat properly. This is one of the common issues so hopefully it will pick up soon. I think it’s just a case of being patient, but Allie will tell you patience is not one of my strong points!!

Tuesday 25th October

Today has been the worst so far. I called the hospital this morning to see how things were and I was informed that he wasn’t that great. His blood pressure had dropped and oxygen needed to be increased as he had been struggling to breathe. I went in earlier than I normally would have to see what was happening. I managed to speak with the doctor who explained that things were worse than yesterday and that there had been talk amongst the team about him getting transferred to ITU. Now when you hear the words ITU it doesn’t exactly instil you with confidence and you automatically think the worst. She did say that they were hoping not to go down this route but it was a possibility if his blood pressure continued to drop. Then came the other blow, currently there were no beds in Aberdeen so if he did need to go to ITU then it would have to be in either Glasgow or Edinburgh.

One of the other issues concerning the doctors was the amount of fluid in his lungs and chest, basically the wrong areas in where fluid should be. There was talk of cardiac docs coming up to see whether they would look to drain the fluid.

The renal doctor came up again to see if things were OK to progress onto day two of dialysis. He himself also said things were worse than yesterday and also spoke about ITU. He then took off and I didn’t see him again (think he was just the junior doctor and couldn’t make a decision without the consultants say so)

Allie also went for a heart scan to make sure all was what it should be there. Luckily the results were OK, although they did say there was a little bit of fluid there but nothing of concern.

When Allie returned from the scan the dialysis nurse was up hooking up the machine, this meaning that he was getting the dialysis without going to ITU, good news! There was the risk the blood pressure could drop during it but if that happened they would stop and then continue in ITU. Luckily everything went to plan, the blood pressure actually went up. Not massive progress but at least it wasn’t deterioration.

30th October

Still no improvement from Allie as yet. They decided against putting him into ITU mainly because he was being stabilised in the ward and there was nothing more they would do for him down there. Plus, there were no beds in ITU! Typical!

He has been getting daily dialysis now for 7 days running, which according to the Dialysis nurses was pretty tough going on the body and something they had never seen before, but they are trying to get rid of the excess fluid, as well as the fluid they are putting in with the TPN feed.

He is still extremely poorly and it absolutely kills me to say this but I’m not too sure he knows it’s me when I am there. I get the odd little smile from him every now and then, but nothing more. Although the other day I think I did get an I love you. He isn’t saying much and anything he tries to say you can’t understand, I think mainly because his tongue is so sore and also the infection and kidneys are affecting his confusion.

The doctors aren’t saying too much except they want him to turn a corner, tell me about it, he has been consistent for days now with little improvement. He is such a fighter and I know he can do it, I just have to be patient.

For the past week I think I’ve managed to hold it together pretty well although inside I am killing, my heart is just so filled with love for him, and I CANNOT lose him. Allie is the love of my life, soul mate and best friend. I need him here with me to make me who I am. Every night I cry myself to sleep, I can’t bear being alone and away from him”.

Reading what I wrote back has been pretty tough given that I know now the end result.  This now brings us up to Monday 31st October.  I went to visit Allie that morning about 10 o‘clock – I had called the ward in the morning and they had told me that his oxygen had to be increased and that he was a little agitated with being sat up.  They were sitting him in a more upright position in order to help the breathing and to try and allow gravity to help the fluid move down the body away from the lungs.  When I saw Allie that morning I thought he looked a little more jaundice.  I had mentioned this to Ben, Allie’s brother the day before but it seemed to be a little worse.  The consultant and a couple of other doctors came round and I was thankful that it was his head consultant and the one who makes all the important decisions.  They did the usual examinations and then spoke to me.  What he said was he still wasn’t improving and that they were changing a drug to treat the fungal infection.  Due to things being so hectic and intense over the past week I am sure now that this was the first I had heard of it being a fungal infection, or I didn’t realise the severity of it and thought it would be easily treated.  I knew that his Hickman line was infected and removed on the 26th October.  This was replaced with a central line in the neck so that they continue to administer drugs intravenously. After the examination from the consultant I was convinced I saw him give a look of something not quite right to one of the other doctors but I figured surely if something drastic was heading our way they would have respected me enough to tell me the truth.

On the morning of the 31st during the consultant’s rounds I asked him how long we were looking at for any improvement and asked if it would be a long slow process and was told yes.  I had been told it would be a slow process a few times and this is why I still had so much hope.  I was informed that ITU was still on the cards but if he did go there and had to be ventilated then this would be a negative for Allie.  Previously I had been told that ITU didn’t necessarily mean ventilation so again there was still hope.  I also mentioned to the consultant about the fact that Allie was more jaundiced and basically told yes his liver tests were pretty abnormal.  You would be forgiven for thinking that I should have read all the signs, but Allie’s liver test have NEVER been accurate and my feeling was that his liver consultant whom Allie had been treated by for the past 10 years hadn’t shown massive concern to the family then this was a good thing.  The consultant also said that they would be continuing with dialysis.

This now takes us to about lunchtime when I called Allie’s mum to tell her how things were.  She had been here at the weekend with his dad and knew things weren’t great so she said she would be coming through on the train and would I pick her up from the station in a couple of hours.

I decided to go home for a bit to grab lunch and then pick up his mum.  When I left the flat to go to the station I had a call from the hospital who wanted to let me know that they were moving Allie to ITU and didn’t want me to panic if I came back to the ward and he was gone.  I asked if he had deteriorated and was told no, they were moving him to regulated his breathing with a stronger oxygen mask and put onto 24 hour dialysis which would be much gentler on him.  When his mum and I got to the hospital we went straight to ITU and were told to wait in the waiting room as they were getting him settled and this could take an hour or so.  About an hour or two later the ITU consultant came into the waiting room and asked us to go to a more private area.  So we sat in a room as he told us that the fungal infection was serious and incredibly hard to eradicate from the body and would kill him if they could not treat him.  He also said that Allie had six vital organs failing and in a patient with three organs failing the outlook was not good with about an 80% chance of not surviving.  Another thing he said was that if Allie’s breathing became worse then he would not be strong enough to survive ventilation.  By this point we were broken and could not take in this information, it wasn’t real.  I asked the consultant if it would be a rapid deterioration if the infection could not be treated and he said that it may take a week.  They were still going to be putting him on dialysis and were going to be treating the infection.  I asked if we should have the family here and we weren’t really given an answer.  Thankfully we took the initiative and his mum called his dad and brother to come through because they had a few hours journey to make to the hospital in Aberdeen.  At the moment I am struggling to get my head around the ITU doctor having broken this news, I would have much preferred honestly and transparency from this morning consultant who I had had a rapport with over the past year having treated Allie for so long. Maybe he didn’t want to be the one to break the news because Allie was so young and a respected patient, but still I would have preferred the news to have come from him. I think I’m just directing my anger at someone.

It seemed like hours before we eventually got to see Allie and the minute that I stepped into the room he looked a hundred times worse than when I had seen him just a few hours before and I gasped and his mum and I broke down.  His jaundice seemed to have rapidly gotten worse in such a short time.  His mum said to me, this would not last a week to take over his body and I had to agree this was horrific beyond comprehension.

The nurses are doctors were still actively treating Allie with medication to control his blood pressure and they were to be hooking him up to dialysis.  We were also asked to leave the room he was in so that X-Ray could come and take an X-Ray of his chest to see whether the lines they had inserted had gone into the right places.  It still felt surreal and we were still clinging onto hope.

It seemed ages again before we were allowed to go back into the room to see Allie and that was the only place we wanted to be, by his side, so it was immensely frustrating.  By this point his dad and brother and sister in law had joined us, along with a few other close relatives who were there providing much needed support for us as a family.

When the consultant came back again to say we could go back in he said that things were not good and he was getting worse but they were going to be doing another chest X-Ray, this time to see whether they could put in a chest drain to drain some fluid.  Due to the fact that Allie was being treated up until the last final minutes there was a tiny bit of hope that I think we were all clinging onto.  Allie was invincible and had come so close to death on various occasions that we thought he would pull through this time.

After the chest drain we all went into see Allie and knew this was it, there was no hope of a miracle.  We were all destroyed in those final moments and would not wish anyone to have witnessed what we did.  At the same time we would have never had it any other way, being with Allie to the very end meant the world to us all and it would have meant everything to Allie. Allie passed away at 0015 on November 1st 2011.

Over the past few days the whole family have been reminiscing about what an awesome person Allie was and the happiness and joy that he brought to our lives.  It was most unfair what happened to Allie even more so because he was the most courageous fighter and he fought right to the end. This is something that we aren’t just saying, it was visible to see the fight in Allie and everything he did he did for others, he didn’t have a selfish bone in him.

We are seeking comfort in the fact that Allie died thinking that the chemo was working and that the symptoms he was experiencing was just par for the course.  By the time things had gotten to the stage of delirium he had no idea that he was never going to recover.  If he had known, I can guarantee that it would have destroyed and distressed him as this was the one thing that worried him the most – his loved ones being heartbroken at the thought of losing him.

It would be very easy to get angry and say that Allie should have never been given the BEAM chemo due to his existing liver conditions. However, in saying that Allie would have taken every treatment thrown at him no matter the consequences because the alternative was that the Lymphoma would have taken over and destroyed him regardless. You will have read for yourself how keen he was to start the treatment and saying no to treatment was never an option for him and he had said this on many occasion.

Losing Allie is soul destroying for us all but we all have to stay strong and remember that we have had however many years of being taught by the master of staying strong.  We have to make him proud.  My whole life was devoted to Allie and this is something that will never change.  Allie has left an amazing legacy not only for his entire family and friends but for the world of medicine.  I have no doubt that in years to come Doctors will be remembering Allie for being such a unique case and should this lead to helping other patients with similar conditions in the future then this is something that Allie would be extremely proud of.

There is so much more to Allie as a person and to his awesome story than what is written in his blog.  There have been a few newspaper tributes to Allie over the past few days which can be accessed online.  These articles are fitting tributes and are no less than what Allie deserved.

http://www.pressandjournal.co.uk/Article.aspx/2505237/

http://www.eveningexpress.co.uk/Article.aspx/2503400

I hope you have enjoyed reading this blog and I will post details of publishing as soon as I know them.  Allie’s dad said the other day something that is 100% true and really sums Allie up and it’s with this that I close the blog:

Alistair Fraser – Limited Edition 1/1

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Day 70 – A very brief update

Just finished stem cell transplant today, very tiring so don’t have the energy to write about it unfortunately.  I will hopefully feel better in the next day or two so will start updating the blog more regularly and I will let you know how the stem cell transplant went.
Finally, a quick note for anyone who uses Facebook to follow the blog:

In the next few days I’m going to permanently delete my own Facebook account. Not just deactivate it, but have everything deleted for good. And I’m 99% sure this will also remove the Facebook page I setup for the hospital blog as well.

So! For anyone that use Facebook to follow and keep up to date with my hospital blog, there are several different ways you can still easily do so.

If you use Google+ – http://plus.google.com/107752883220762815055/posts
If you use Twitter – http://twitter.com/#!/hospitalmusings
If you use RSS Feeds – https://hospitalmusings.wordpress.com/feed/

Or you can subscribe via email under ‘Email Subscription’ on right of main page – https://hospitalmusings.wordpress.com/

And finally, you can just check the main page regularly where any updates will be listed first – https://hospitalmusings.wordpress.com/

Hope most of you keep reading the blog. Cheers!


Day 59 – Finally escaped

After getting yet more magnesium I finally escaped from the hospital at around 9.30pm yesterday. That’s me home until the 19th September when I go back for the final, seriously strong chemo treatment of this regime. Feeling a bit better again today which is great as I won’t spend my time out of hospital feeling like crap.

That’s about your lot. Very short, but not got much else to say today.


Day 51 – Punched in the kidneys

You may remember that during my last scan a small lump in my kidney had become larger from a previous scan and was starting to cause a little concern, so it was referred to urology for further investigation.

Today, I saw one of the urology doctors and he did not tell me what I wanted to hear. The lump is a tumour and they believe it to be cancerous. Can’t say I was shocked or surprised by this, I didn’t feel any different after they told me than I had done when I woke up this morning. Of course, I am determined as always to beat it, but you can’t help but feel the odds are starting to stack up against you sometimes. And it’s bloody hard work staying positive and focused when you get yet another kick in the balls. But what else is there to do but grin and bear it and get on with things.

The unbelievable thing about this is, that it is not related to the Lymphoma (which is why current chemo will have no effect on it). One possible cause is that my immune system has been heavily suppressed for over a year now so my body was unable to fight it, which would mean yet again treatment I am getting for an existing illness has been a contributing factor in a new illness. Or, it’s just really, really, really, REALLY bad luck.

One good thing is they are pretty confident they can remove it and there are a number ways do so. However they can’t do anything until I have finished chemo as any wounds are going to leave me a sitting duck for some hardcore infections. I think that probably means around six to eight weeks or so before they can start dealing with it

As for the stem cell collection, it’s not going to well so far. They have not risen to a high enough level so I am getting G-CSF again tonight, tomorrow morning (not had it twice in 24 hours before) and then a different medication tomorrow night which I am guessing is stronger or works in a different way. Looks like it will be Thursday before they can try and collect them, unless it comes good tomorrow after the morning dose and they can try then.

Not a good day.


Day 50 – 50 days

50 days. I have now spent 50 days in hospital.  I started this chemotherapy regime 63 days ago, which means I have spent around eighty percent of the last 9 weeks in hospital.  Although, not all of those days would have been overnight, the majority were.

And it turns out that my 50th day in hospital didn’t bring me any luck. I arrived this morning early doors at 6am to have blood tests done and later in the morning the doctors made an appearance. The amount of stem cells in the blood was not high enough to go ahead with collection, and hadn’t  actually improved much over the weekend.  So it was more injections tonight and try again tomorrow.

My haemoglobin levels were also low so I need to have a blood transfusion. I am receiving the first bag of blood at this very moment.  My magnesium levels are pretty low as well so I am getting a larger than normal bag of that which takes eight hours to administer rather than the usual four.  It looks like the nurses will be in at least a couple of times tonight to change bags, giving me a great nights sleep…

So much for my previous optimism of not having to spend another night in hospital until next chemo begins. Not sure how long I will be in for this time, could be one night, could be several nights. As usual never know from one day to the next what’s happening, which does get a little annoying at times, but well, it’s just the nature of the treatment.


Day 28 – Poo

There are two guys in this room that need to use a commode. Neither are very mobile for different reasons so can understand the need for it.

Nevertheless it’s starting to get on my nerves a little. It seems one of them only needs to use the commode once a day, the other is my main source of my annoyance as he needs to go several times a day. I feel really bad getting annoyed at them for using it, as obviously it can’t be helped, I’m sure they would much rather have the privacy of a toilet. However, what annoys me is the regular smell of crap around the room. Three or four times a day I have the pleasure of a fresh release of ‘Eau de Sh*t’ (apologies for the language). Making matters worse, one of the guys must have some problems as his smell seriously bad.

What I don’t get is why don’t the nurses spray a bit of air freshener around the room (there is even two cans of the stuff in the bloody toilet), because, as the windows don’t open the stench lingers in the air for ages. Sometimes it feels like your in a badly kept public lavy rather than a hospital.

Sorry about the lack of updates over the weekend, but I haven’t really had to much to say to be honest. I got home in the afternoon on Saturday and Sunday, so that was six or so hours out of the place each day, and when I have been here there hasn’t been much going on.

Whatever virus I had seems to be clearing up so they now have me on antibiotic tablets rather than IV. Apparently my blood counts have started to drop so I may well end up getting magnesium and blood transfusions this week depending on how bad it gets. I started to feel a little off yesterday evening with what feels like the early stages of a cold so hopefully that won’t come to much.

The doctors should be round sometime in the next hour, so I will find out what the state of play is then. I think it’s my consultant doing the rounds which is good as I usually get the most complete and accurate state of play from him. Some of the doctors I see don’t seem to have much of a clue with what’s going on and I wonder if they actually work here at all or are just pretending.


Day 24 – A day earlier than expected

Going back into a hospital a day early was not how I intended to spend today. I woke up during the night and didn’t feel particularly well. I was pretty nauseous and sore with the added bonus of a headache, but waking up in the middle of the night and feeling terrible is nothing new and figured I would be OK in the morning.

Well I figured wrong. Felt even worse when I woke, so got the thermometer out and temperature was 38.5 degrees or so which is a little on the warm side. Got on to the ward and they told me to come straight in. Bollocks.

I was pretty surprised when I got out of bed to find out I was now a cripple! Was experiencing quite a bit of muscle pain and could hardly move. So I slowly dragged my arse to the car and my wife put the pedal to the metal (not because there was a particular rush, this is just how she drives normally). When we arrived I collapsed onto the bed and waited for the docs to do their stuff. In their usual haste, one eventually turned up about an hour after I arrived and had a look over me. She thought I had picked up a viral infection so got me on some IV antibiotics and I proceeded to sleep until the middle of afternoon.

Fortunately I’m feeling a bit better now, although staring at the laptop screen and writing this has been quite an effort! Looks like it was indeed a virus, will probably find out more tomorrow morning when see docs again.


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