Cancer Crohns Charity was set up in memory of Graeme Fairhurst

Graeme Fairhurst Memorial Fund

We have set up this memorial fund and charity to raise awareness of living with 3C’s. Our Aim is to improve the social experience of young adult patients of the Royal Liverpool Hospital - we are only a small charity and realise this will take a lot of hard work but if you read on you will understand why.

Graeme our son and brother to our daughter tragically lost his fight against cancer on the 19th October 2009 – he was just 30 years of age. Graeme had been diagnosed with cancer on the 31st October 2008 after a routine endoscopy, and was told the tumour had probably been there a couple of years and because of its size was inoperable, we were told not to organise anything for the future and that Graeme was very sick, we were told they would try radiotherapy and chemotherapy together to try to shrink the tumour, but with hindsight we now realise they knew he wasn’t going to make it – at the time this was hard to take in as Graeme was just about to start a new job.

Graeme also suffered from Crohns Disease and Ulcerative Colitis which was diagnosed when he was 14 – he had been ill for 12 months prior to his diagnosis – at the time we didn’t know a lot about Crohns Disease apart from the fact that there was no cure and although it hit us hard at the time I remember thinking at least it’s not cancer. Graeme was just pleased that they could give him some medication to make him feel better (which was Steroids)so that he would be able to eat again and put some weight on – I remember saying to him when we got back from the hospital and trying to make it ok like mothers do that I wished I could take it off him but he just said don’t worry I will be ok and he was still saying I will be ok when he was told he had cancer. Crohns is a very debilitating illness, but Graeme tried his best not to let it get in his way of enjoying life as best he could, the doctor he was under at the time just kept giving him steroids which certainly made him eat but as soon as he came off them he would lose his appetite again and become ill, during this time we started to do some research regarding Crohns and after speaking to a lot of people we decided to change hospitals when he was 17 and we managed to get him transferred to the Liverpool Royal Hospital which is a teaching hospital and knew that if there was a new treatment for this illness they would be the first to get it and we were told they wouldn’t just fill him up with steroids every time he had a flair up. Graeme had a few spells in hospital and the main thing he hated was being in wards with people of 50+ this was depressing in itself to a 17 year old.

Graeme’s first love was cars especially racing cars, he learnt to drive at 17 and couldn’t wait to own his first racing car but that had to wait until he had a job – meanwhile he had to make do with driving my Metro.

Graeme also played the drums in a band with his friends from the age of 16, which he really enjoyed but we knew it took it out of him when they played a gig as it would take him all week to get over it as he would be that tired, one time I remember when Prof Rhodes wanted to take Graeme into hospital as he had a flair up with his Crohns and had lost a lot of weight and all Graeme could think about was letting the band down as they had a gig – needless to say he went into hospital!

We were really proud of Graeme when he got his HND in Engineering as he had struggled with his health through College. He was working at Morrison’s then part time while he had been studying but he was determined to get a job in Engineering so he wrote to various local companies to see if there were any vacancies. When he was successful we were over the moon as all he wanted to do was work so he could buy his first racing car which was a Lancia, which had Irish number plates on – they caused him problems because if he was driving back home late at night from Manchester he would always get stopped by the police questioning him if the car was his he always kept this car in tip top condition because he knew the police would love to have caught him out.

When Graeme was 23/24 he was having a really bad flair up, and there was talk of them operating on him and giving him a colostomy which he really didn’t want – so they decided to try a new drug which was given by an infusion every 8 weeks, and he just had to go into hospital for the day - thankfully it worked for Graeme and after a couple of weeks started to build himself up again, and it kept him reasonably well.

When Graeme was 27 he was given the chance to go and work in America, something he had always wanted to do. When we asked him about his infusions he was having every 8 weeks, his answer to this was they will have them in America or may have even something better as they were probably more advanced than us. He went in September 2006, he made lots of friends and was really enjoying life and the pictures he sent home he looked really well. He had got himself a sports car and a truck he needed the truck for the winter because the snow was so thick. But then in August 2007 after he had had a flair up for a couple of months they told him as he was quite ill he would have to have an Illeostomy fitted, but as usual he was ok with it because they said he would be able to have it reversed after about 6 to 9 months, and after getting over the initial operation he was fine and thinking back this was probably the best he had ever looked for a long time. I went over in August just to make sure he was ok and then we all went as a family in November for Thanksgiving it was a lovely holiday and Graeme was really well little did we realise we probably wouldn’t see him looking that well again (sometimes it’s just as well we don’t know everything about the future). In April 2008 he went back into hospital to have his illeostomy reversed, which we thought was going to be quite a simple procedure – how wrong could we have been, after they had performed the operation they found another blockage in his colon, so he had to be fitted with a colostomy, and even after that operation he got an infection and had to have another couple of procedures during this time he was really quite poorly and was in hospital for a total of 4 weeks. They say things happen for a reason Keith and I had already arranged to go back to America on the 10 May for two weeks holiday initially to spend a week with Graeme and travel a bit for a week. The day we got there they let Graeme out of hospital after the initial colostomy operation and the day after he was taken back in with a suspected infection but as I said he was really poorly and was in hospital for a further 2 weeks – we stayed for 3 weeks so at least we could give him some support when he came out of hospital as he couldn’t drive straight away or even walk that well.

Graeme had already decided to come back home to England as he couldn’t get his Green Card to stay in America (which was just as well) so he came back home at the end of June 2008. Graeme came back to live with us as he had sold his own house before he went to America, he soon seemed to recover again and started to look for a job and was adamant that he wouldn’t be living with us for long and would get his own place. But we were at the start of a recession and looking for a job wasn’t as easy as he had thought – Graeme found it very hard not working because although he had all these setbacks in his life he had always managed to work – but he didn’t give up. Then in October 2008 he got offered 3 jobs in one week, one of which was his old job back in Warrington, after a lot of consideration he decided to go back to his old employer as they knew about his health and his Crohns/Colitis and as he hoped he would be able to have his Colostomy reversed in about 12 months time they would be ok with this. Graeme was really looking forward to going back to work and earning money again so that he could go racing with the car he had imported from Japan when he came home.

When he first came back to England he had to register back at the Royal Hospital in Liverpool under Prof Rhodes who had taken care of him since he was 17. Prof Rhodes organised for him to have an Endoscope just to see how his Crohns was and to make sure everything was ok. Graeme also had a problem with fistula’s which flaired up from time to time but having the infusions usually kept them at bay – but Graeme had not had an infusion since he left America. When Graeme went back to get the results on the 31 October it was then that he was told he had cancer in the pelvic area – Graeme thought he was just going to be booked in for an infusion – Graeme was also due to start back at work on Mon 3 November – How unfair was this!!! I think we just spent that weekend in a daze. Fortunately when Graeme got in touch with his old company they told him they would keep the job open for him until he was well enough to return to work.

Graeme had to go back into hospital on the 4 November for various tests and to make sure the cancer had not spread anywhere else - he ended up staying for 2 weeks as he got an infection while he was in there so until that cleared he wasn’t allowed home.

When Graeme came out from the Royal Hospital at Liverpool he had a positive attitude to his cancer so we realised we had to do the same. He had to go to Clatterbridge for 5 weeks of Radiotherapy and Chemotherapy – he was having his treatment right through Christmas and New Year but he was coping with it really well and we enjoyed Christmas as best we could – we just had one Grandson then who was just 2years old and he really made us all smile!!! When Graeme went back for his scan and his results in March 2009 he was told the tumour had only shrunk slightly, so they organised for him to have another 12 weeks of chemotherapy treatment. Graeme was really fed up at home and desperate to go to work so he asked the doctor could he start work – the doctor agreed that he could go part time while he was having his chemotherapy treatment. Graeme worked 4 days a week I am sure the doctor didn’t want him to work this much, but it gave Graeme as sense of normality again – even if he was shattered when he came home every night.

On the 24 May 2009 Graeme was 30 – Graeme was not one for big parties and being centre of attention so we organised a BBQ for close family and friends – we were lucky it was a nice day and evening and he really enjoyed it and everyone was being positive that this next course of treatment was going to shrink the tumour enough to operate and take it out. How wrong could we have been when he had his next scan at the end of July he was told the tumour had not shrunk at all, so the doctors decided they would try a new drug on Graeme which had good results but they had to do tests on Graeme’s original biopsy to see if it would work which seemed to be taking a long time before he could get started on this treatment.

Whilst Graeme was waiting for this new treatment in August Graeme became quite ill and started vomiting, and was in a lot of pain in his stomach so much that he had to take time of work, he went back to Clatterbridge and they decided they would try this new form of chemotherapy - but unfortunately he just carried on being ill, he eventually became dehydrated and was taken back into Clatterbridge hospital where he was put on a drip to get fluids into him, but unfortunately his kidneys couldn’t cope with the fluids and his legs started to swell. He also had to have a tube up his nose and into his stomach this was to completely empty his stomach as they decided he probably had another blockage, he had so many tubes and drips attached to him we got confused what they were all for. Then on the 1st September we were told that he did have another blockage in the colon and the only option was to open him up and see if they could remove it. We were told the operation would be touch and go but Graeme wanted to have it as he said he couldn’t carry on like he was. Thankfully he survived the operation but only to be told there was nothing more they could do as everything had fussed together and they couldn’t get at the blockage, the only hope was it would unblock itself, (I think we were just told that to give us some kind of hope), but I think Graeme knew at this stage that he wasn’t going to make it but I don’t think he ever realised it would be so soon.

We were told they would keep him as comfortable as possible with palliative care, he was allowed to come home on the 18 September so we organised for him to be brought home by ambulance as we couldn’t get him into our car – the worst thing for us was he could only walk with a walking stick, as his legs were so swollen and painful because the cancer was now affecting his kidneys but he had no weight on him at the top of his body, our home then became like a mini hospital as we had nurses coming in every day for a couple of hours to change his drips etc. I remember him on the phone to one of his work colleagues and he just said once I get this swelling down on my legs I’ll be out driving my car again, I don’t know if it was just a show in front of us or he really believed that would happen. For the first two weeks he was home he managed to get out of bed as long as someone helped him, but he also needed help with washing and dressing it was horrible to think it had come to this for him after all he had been through.

It was about 2 weeks before he passed away, a locum doctor had come to see him as we had been told he was no anaemic and this doctor wanted him to go back into hospital, which he refused to do and this was the first time he actually talked about dying and said if this was going to happen he wanted to die at home as he said he knew his body was giving up. We will never forget that day as long as we live – it was so hard your son telling you to ‘ just let him go’ as he was sick and tired of hospitals and operations and he knew that his body was so weak and that he had had enough. But we are so glad we had those last two weeks because once we had had that initial conversation it meant that everyone could be honest about how things would be, we even managed to ask where he wanted his funeral and if he wanted to go in a plot with my mum and dad which he did – we did a lot of crying but we also did a lot of laughing, his friends came to see him knowing that he wasn’t going to make it which was also very hard for them. His last couple of days were particularly hard as he started to lose his sight and for him that was worse than anything – just to explain briefly my dad was blind and had been since he was 6 and Graeme always thought there could be nothing worse than not being able to see. Graeme passed away peacefully on the 19 October 2009 at 8.40pm in his own bed which was what he wanted.

Life is not fair, but those of us who are left behind have to get on with it as best we can, although life will never be the same for us and we have a big hole in our hearts that we will never fill, this is why we have set up this Charity in Graeme’s memory, we are aiming to raise enough money eventually to improve the social experience of young adult patients at the Liverpool Royal Hospital by creating their own recreation area with nice sofas game boys, laptops and much much more - anything just to make the stay in hospital a more pleasurable experience. I know it is something Graeme would have liked rather than being stuck with older people all the time which is depressing in itself without being stuck in hospital for a couple of weeks at a time. It will take a long time as we are only a small charity but with everyone’s help and support we are determined to do it.

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