"My journey"

About: Northwick Park Hospital / Accident and emergency Princess Anne Hospital / Gynaecology St Marks Hospital / Colorectal surgery

(as the patient),

I was lucky enough to be referred to the above hospitals when I was diagnosed with colorectal cancer last year at age 38 - well actually it was a day before my 39th birthday. I should probably start from the beginning...

I am 40 years old and I live in the Falkland Islands. Because our hospital is only small, all cancer patients are sent to the United Kingdom for treatment.

I first went to my GP in around July 2013 because I was having bad period pains that continued after my periods had stopped. I also had excess wind and was having to poo more often than normal. My GP thought at the time that it could be down to endometriosis and thought that maybe this was also affecting my bowel movements. Scans revealed a mass on one of my ovaries and although cancer was suspected it turned out to be a bad case of endometriosis. I had to travel to Southampton to have the mass removed and ended up having a complete hysterectomy. This was conducted at the Princess Anne Hospital in Southampton. I really couldn't fault the care. Everyone was amazing. The only gripe I would have was that on one occasion there were two rather loud ladies in the ward who continued talking in a very loud manner till about 4am. Instead of the nurse asking them to be quiet, she closed the door of the ward so that other patients in other wards would not be disturbed. This really was the only thing and it is rather minor.

I was staying in a B&B during my time in the UK and noticed that blood had started appearing on the tissue when I went for a poo. Wind had increased too.

I visited a GP located around the corner called Raymond Road Surgery and saw a Dr Robinson. I explained the issues I was having. He had a look at my bottom and said I had two deflated piles. Had he done an internal examination what was there would have been found a lot earlier. This was in September 2013.

I returned home to the Falklands, to my family and to work. Things did not seem to be improving with my back passage. There was a constant pressure.. as if I needed to go all of the time. In early January 2014 I visited my GP when I got extremely worried after the amount of blood increased - it now covered the toilet. Sadly there was nobody at home who was qualified to do colonoscopies so I had to wait till a specialist visited the Islands in late Feb.

When I had the colonoscopy, it revealed a 5cm tumour with ulcerations located 12cm inside the rectum. The specialist told me there and then that in his opinion it was cancerous and that I should expect to leave the islands before my results arrived from the UK.

This was not the case, I received the results in mid March but I was not flown out till April.

On my arrival in Harrow, UK, I attended St Marks and had a colonoscopy. Although I didn't ask at the time, I got the impression that they had not been told that I had had a colonoscopy and the results already. I wish I had confirmed this at the time.

I had to have a CT scan and an MRI (did not like the latter)

I was given an appointment with a surgical team at St marks and met with my designated Macmillan nurse. I was devastated when they told me that I would need a temporary stoma. I broke down and cried. My initial reaction was that my life was over – over the top I know – I kind of completely forgot that I had cancer!

Surgery was planned for May 2014. Meanwhile I met with the pre-assessment nurse and a stoma nurse. I was still very negative about the whole stoma thing. That is, until on one of the visits to see the stoma nurse I became aware of a young lad who could have been no more than 13 sitting there in the stoma reception room with his mum. I told myself to think myself lucky and just get on with it. I realised that my attitude sucked and that I was doing myself no favours. The stoma nurse, Debbie, was a gem! At the time I had concerns like negotiating an 18-hour flight with a bag etc. We talked about stuff and she made me feel more confident about it.

So in May 2014, Mr Antoniou and his team performed my op. They removed the tumour and surrounding bowel and gave me a loop ileostomy. I had 5 days in hospital following my op and of all the people I admired most it had to be the nurses in the Frederick Salmon Ward who looked after me. They were emptying my bag and cleaning the stoma like it was nothing. The smell initially was horrendous – I really can’t describe it!

I did struggle with it when I left hospital. My mother had travelled with me to the UK and for the first three months we were in a B&B. One evening, just after getting out of hospital she dragged me back to the ward to try and get some advice. I had changed my bag seven times in the space of an hour but it kept leaking. I was getting quite distressed! The ward staff sorted me out and gave me some tips. The next day the stoma nurse called me to say she had heard I had had some issues and an appointment was set up. It did take a while for me to get used to the bag and even now I still have the odd accident!

Two to three weeks after getting out of hospital I started experiencing a pain in my back and I thought that maybe I had pulled something. The days passed and the pain was getting worse. One night I woke up because I was having to take small shallow breaths – the pain was sharp and really quite bad. I tried to look on the internet to see if I could find out what it could be. I was having problems breathing and it wasn’t getting any better so I woke my mum up who called an ambulance. The first paramedic arrived and gave me some paracetamol. As these things often do, the pain subsided by the time the other two paramedics arrived. I was taken to hospital anyway. While there I was sent for an x-ray – the ‘attacks’ happened a couple of times whilst there. After 7 hours I was seen by a doctor who took blood from in between my knuckles – not a pleasant experience! I was sent home but I was told to return to the hospital the following day 2pm. I can’t remember the name of the department – it was on level 6. Whilst there I had another attack and was sent for an ECG. I also had a CT scan. The doctor told me to go home but that he would call me at around 6pm that evening with the results. He called and said I had a pulmonary embolism and to go back the following day – I can’t remember the time he said. Less than an hour later though I had another attack and I really couldn’t breathe so mum called an ambulance again. This time I was taken to a ward after A&E where I spent several days after being put on Warfarin.

Not long after I met with Dr Anyamene, my Oncologist who confirmed the tumour was stage 3 and I was offered chemotherapy. The cancer was described as ‘aggressive and mutated’ which I really didn’t like the sound of and I was told that I didn’t have to have the chemotherapy and that I would be monitored closely if I chose not to have it. The chemotherapy would consist of 6 months of fortnightly sessions lasting around 3 hours. At this point I was in a bit of a quandary. I had already been away from my 6 year old daughter, my husband, my work, and my home for 3 months. My mum would be going soon because she had to return to work which meant that apart from my visits from my 17 year old son, I would be alone. (My son was attending Chichester College).

I chose to have the chemotherapy. I had to kill whatever might be left there and reduce the chances of it coming back.

My mum left and the Falkland Islands Government found me a flat in Harrow. 3 months in a small room in the height of summer was a nightmare! I was glad to be out of the B&B.

It was around this time that I started a kind of blog on Facebook detailing every step of my journey. Initially I did not want anyone to know about my stoma – I felt ashamed but realising that it had saved my life I decided I wanted to tell others about it. I come from a small place, population less than 3, 000 and the type of place where everyone knows your business. So everyone at home knows now and that is fine. I was messaged by four people who said that my openness about it all gave them the push they needed to go and see a GP about concerns they had. That made me feel good about myself. I felt like I was doing something good.

In July I met with a chemo nurse and had my first visit of the chemo ward. I remember seeing all these people having their treatment and not knowing where to look. I was taken to have a Hickman Line inserted and in mid July 2014 I started chemotherapy – the chemo team at St Marks are truly amazing! Karen and her team do a fantastic job.

Around a month after I started chemo my face swelled up. I looked like a hamster. I thought maybe I had had a reaction to something. I had recently changed shampoo so maybe that was it. I spent a couple of days trying to figure out what it could be. My face just seemed to getting bigger and my eyes and veins in my neck were bulging. It didn’t hurt but I decided to go to A&E at Northwick Park. I didn’t have long to wait because I was a cancer patient. The doc said that yes, I probably did have a reaction and said that it was unlikely to be a blood clot because I was on fragmin (the warfarin had been replaced by daily fragmin injections when I started chemo). So I was sent home.

Over the weekend it didn’t go down and on Monday I turned up for chemo and spoke to Karen in the chemo unit. She agreed that my face was swollen and called a doc to come and look at me. He told me to go back to A&E. There I saw a lady doc who touched the veins in my neck and said she suspected that I had a clot on my Hickmann line. I was taken to a ward where I had an ultrasound and a CT scan. I had a 2cm clot in and around my line which was restricting blood flow to my head. I then had a catheter inserted in my arm. This and the Hickman line were releasing heparin at the clot to try and dissolve it. I was sent to another ward where they closely monitor patients (I wish I had written the names of these wards down! ) where they were, again, amazing! After a couple of days I was moved again and then released when the clot had gone.

Chemo I found tough going. The kind of chemotherapy I was having meant I was not able to drink or have anything cold. I tried drinking warm water, coffee, etc. I found that the first couple of days following chemo were okay but by the 3rd day I would start vomiting and then by the 5th day I had no energy. I was struggling doing simple things like dishes or walking to the bathroom. By the 7th day I would start getting better but would still be rather breathless. By the 9th day I was back to normal but then it was time for chemo again. In late November my husband and daughter visited me.

There are people probably saying that they should have come with me in the first place. To me that was not an option. We have a mortgage to pay, bills to pay and my daughter had school. Both my husband and I had recently started new jobs and neither of us had the sick or annual leave required to cover any kind of absence from work. The way I looked at it was that at least I had the rest of my life to be with them once this was out of the way. I was quite lucky in that mum has helped financially and my place of work has continued giving half my pay, despite the fact that I am not entitled to it.

So they arrived! What should have been a amazing reunion turned out to be a disaster. I was having the worst time ever after chemo. I met them at the door but then had to lie down for the rest of the day. I recall crawling to the bathroom during the first night they were here and having to sleep on the bathroom room because I did not have the energy to get back to bed. The following day my whole body starting cramping and my husband called an ambulance. Turns out I was severely dehydrated. I had to spend three days in hospital and then I was finally released. After that they reduced my chemo dose and changed my anti sickness pills. In hindsight maybe I should have been a bit more descriptive with the chemo team when it came to my side effects instead of just saying, ‘yeah I was sick and I felt pooped. ’

Early January, my daughter and husband left and returned home. The rest of my chemo treatment went okay. I finished in Feb. I have seen my Oncologist since then who told me that hopefully she doesn’t see me again … in the nicest possible way that is. She also told me that I have a small something on my pelvis that she wants investigated but she hopes it is a fluid filled sac. I have had a CT scan for this and I am waiting for the results. I also have an enlarged thyroid which she wants me to have an ultrasound for. That is not till April. Tomorrow, I have an x-ray to see if there are any leaks in my bowel. If not then I can have my stoma reversed. I have not had a fixed appointment for the op as yet but I have been told unofficially that it is in early May. Then, after a year in the United Kingdom I can finally go home. : oD

And that is my story, long and probably full of typos but my story nonetheless.

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