Category Archives: Living with lymphoma

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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Finally, some progress

I was up at the outpatient clinic on Thursday, so I suppose I should let you all know what happened. It was pretty good news all things considered. All the problems I had are back to normal, well my definition of normal at least. Except for my liver. Bilirubin is quite high, but it’s stable, which is apparently good enough to go ahead with the chemo with some adjustments to the various drugs, and have the stem cell transplant.

I go into the hospital on Tuesday for a final check over and to have some blood taken. If everything is still OK the chemo will go ahead on Wednesday. Although knowing me I’ll manage to pick up a cold over the weekend or something that would throw a right spanner in the works…

As I’ve said before, this treatment is the strongest one I’ve had yet, so not sure what to expect, and I get the idea that the consultant isn’t sure either. Just need to see how it goes. The chemo will last six days, and once it’s finished I go into isolation for around two weeks. I get a day off between finishing the treatment before I’m given the stem cells. I’m expecting to be in hospital for five weeks or there about in total, but it completely depends on how my recovery goes.

Not too long ago I thought getting the final treatment out of the way and hopefully getting good results was all that I had to worry about. But once this is all over there is still the small issue of a tumour in my kidney to look forward to… I’ve said it many times before, but when will I catch a break.


A little good news, but treatment still delayed.

It’s been quite a long gap between this and my previous entry, sorry. I’m lacking motivation to do much at the moment, unfortunately this has also impacted the blog. I have been meaning to post on it for a few days now, but whenever I think about doing it, I simply can’t be arsed.

I was at the outpatient clinic on Thursday and there was a little good news. The results from the second kidney function test where much better than those from the previous one, so that is no longer a concern. If it hadn’t improved they would not have been able to do the stem cell transplant which I assume would mean they would have to reduce the strength of the chemo. That wouldn’t have been very good.

The fungal infection on my skin has also cleared up. Once I stared taking the medication to treat it, the infection started to clear up within 24 hours and rapidly improved from then on. That’s another issues out of the way that would have prevented the chemo going ahead.

However, there has been very little improvement with my liver function. There was a very small improvement with the level of bilirubin, but it still remains very high and at the moment it may not cope with the high strength chemo which could lead to liver failure or other complications. So for that reason chemo was delayed again to allow the liver more time to recover. Although, they did not have any room for me to have it this week anyway. They can only do so many stem-cell transplants at any one time and are at maximum capacity.

I was also back in the ward on Friday evening receiving yet another magnesium infusion. That’s twice in the space of a week. Not sure why my magnesium is so low and not improving, I should probably ask next time I see a doctor.

So we are now looking at hopefully starting chemo on the week of 3rd October. I really hope I’m in a position to have it then as I am now starting to worry about the increasing gap between the two treatments and the possibility of the lymphoma starting to grow again, and also delays with this chemo means delays to when they can start to look at the tumour in my kidney. All very worrying at the moment…


I might be home, but I’m still spending half my time in hospital…

I had to spend over four hours in the outpatients clinic yesterday to get yet more magnesium. Thankfully I had a magazine and my PSP with me which, along with some sleeping, helped pass the time.  On the subject of sleeping, over the last week or so I have been very tired.  I usually get a good nights sleep, but I still find myself falling asleep at least twice a day. Sometimes only an hour or two after I have gotten up. I mentioned this to a doctor yesterday and they took some blood to see if there was anything showing up that might reveal the cause.

Tomorrow I’m back in the hospital, again, to have another GFR (kidney function) test. The results from the test I had last week were not very good. Apparently my kidney function was similar to that of a frail old lady, which is a bit worrying. However sometimes these results can appear as a one off and things are more normal when the test is done again. So fingers crossed for that!

At the moment it feels like everything is conspiring against me having the final chemo of this regime. Extremely annoying and stressful.


Lymphatic Cancer Awareness Week 2011

Did you know it is Lymphatic Cancer Awareness Week (12th – 18th)?  No, well neither did I until a couple of days ago.

It’s main purposes is to raise awareness of  Lymphoma, which is pretty obvious considering the name of the event.  It’s a good thing if you ask me, as not many people have a clue what is.  Sometimes I give up calling it Lymphoma and just say I have cancer instead, which is true, but not very accurate. However everyone can mostly understand what that means.


Delayed

I was at the haematology clinic today, and things did not go particularly well. The large patch on my head has now spread to my face where some red marks are starting to appear.  It seems I have Dermatophytosis, which is a fungal infection of  the skin.  However this is not a definite diagnosis as the labs have not finished testing the skin sample they got several weeks ago. But I have been given some medication which should clear it up, as it needs to be totally gone before I can start next treatment.

My bilirubin levels are also high. Now I am not exactly sure what the cause of that is (other than my liver isn’t functioning properly), or what impact it has on the body other than making you jaundiced. All I do know is, that with regards to chemo it’s not good as they would have to reduce the strength of the chemo if unable to lower it, which means the last treatment would be much less effective.

So the end result of this is that my chemo has been delayed for one, possibly two weeks. I can cope with one week, as that was one of the dates being considered before they settled on the 19th Sept. But a two (or more) week delay makes me slightly uneasy that the Lymphoma will start to grow again due to the large gap between my previous and next chemo.  All in all I am pretty damn annoyed.  Since my chemo started last November it has been fairly problem free other than common problems, until now. It’s my last and most important treatment of my current regime and I start getting problems which is just typical. Luck is never on my side, yet again I’m having to do things the hard way. You would think I would be used it by now. But it’s hard work to keep pushing on and never gets any less frustrating or depressing.

Finally if anyone tells me “at least your getting more time at home” they will get a slap. I don’t want more bloody time at home. I want to get the treatment started and finished as soon possible. Each week it’s delayed just means an extra week until I get discharged and find out how effective the chemo has been at the end.


Crop Circles

I thought it was about time I updated the blog. I have been enjoying my time out of hospital and trying not to think about the illness and treatment much, and so the blog kind of slipped my mind.

The other day my wife noticed I have rather large red mark on the back of my head, so she took a photo of it:

I knew there was something there a few weeks ago because the back of my head had been a little painful, which eventually went away and left me with what I thought was a small area of dry skin. I had no idea how big it was, it looks like some kind of crop circle on my noggin! I also didn’t realise I had lost so much hair round the back. I noticed it was getting a little thinner all over after starting the current regime, but it looks a bit worse in a photo than it does in the mirror.


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