MY CANCER JOURNEY SO FAR

I am 32 years old and up until the beginning of this year I thought I was a reasonably fit and well woman.  OK there might have been some room for improvement in my diet and exercise, isn’t there with everyone’s?

On the 8 March 2006 I was informed that I had Jejunal Adenocarcinoma (small bowel cancer), which apparently is quite rare.  My Oncologist then proceeded to tell me that this was terminal and that I could have anything from 6 months to 3 years to live.  This was not the news I was expecting.  I had been very excited that day as they were releasing me from hospital, after spending 3½ weeks there following investigations and then an operation. That excitement soon disappeared and sheer panic set in.

During my stay in hospital my surgeon had asked me how long I had been feeling ill and what my symptoms were.  I started to tell him that my symptoms began after my Christmas meal and that 5 days later they were still there.  At first I thought it was down to over-indulgence during the holiday build-up and so I took myself off to the doctors.  I went to the doctors weekly for 6 weeks until my husband called an ambulance and I was admitted.

I had been advised by my doctor that I needed an Endoscopy, which would see inside my stomach and hopefully shed some light as to why I could no longer eat.  The NHS route had a long waiting list so I asked about going private.  Unfortunately the person I needed to see was on holiday so again I was told I would have to wait.  My doctor advised it would be quicker to wait for the private consultant than go through the NHS.  Due to my desperation I enquired about other private hospitals within an hour’s drive of where I live.

My surgeon could not believe what he was hearing.  By the time I was admitted to hospital I could no longer keep food or liquids down.  He explained that there were other people within my local area that I could have seen.  My surgeon was so concerned about the way I have been treated that he actually phoned my doctors’ surgery to discuss this with them.

Up until this time I trusted whatever my doctors told me was wrong with me.  I followed any treatment they gave me without question.  I was brought up to respect people of authority - my elders and doctors.  The doctor knows best....  After my experiences this year I question everything. 

It has taken a while for me to accept that I have had a major operation, one where I could have died due to the condition I was in when operated on.  It has been a struggle to come to terms with the fact that I have a terminal condition.

OK the outlook from my Oncologist’s point of view doesn’t sound that great.  This is a rare cancer therefore there is hardly any reported information on my condition.  My Oncologist is giving me what little information there is and treating me as they would for bowel cancer. 

From my point of view this is a rare cancer, so what do they really know!  I have started to try and find someone who has treated patients with this condition and has a specialist interest in small bowel cancers.  I have not just limited my search to the UK; I have contacted cancer centres within Europe and the USA.  I have found these contacts in several ways: searching for my condition on the internet, phoning cancer centres up, and speaking to Oncologists who specialise in Upper GI cancers.  I even asked my Oncologist what she would do and who she would get another opinion from if she was in my situation.

I would urge people to take their lives in their own hands.  As long as you keep everyone informed, including your doctors, of what you want to do, then they all seem happy to help you.  At the end of the day I am trying to prolong my life for as long as I can.  This is a natural reaction by anyone, not only cancer patients.

My phone calls have often resulted in requests for medical information about myself, namely my Histology report.  I now have in my possession, on hard and electronic copy, the following: Operation notes, CT scan reports, Histology reports from two hospitals, Digital images of my tumour, and my chemotherapy chart.

I have found the Histology report is the most important document to get hold of.  I managed to get a copy of this by phoning my hospital and asking to go through to the Histology department.  I then asked if they could provide me with a copy of the report.  Don’t worry if they are a bit taken aback by the patient phoning them, I don’t think they are used to it.  This is your tumour that you have grown therefore you have the right to know everything about it.  Get the name of the person you are speaking to so that you can build up a relationship with them.  It’s better to try and talk to the same person each time. 

With the help of the Rarer Cancers Forum Website I am now going to see a Specialist in Small Bowel Cancers in the UK. This specialist has also seen people with my condition before.  This will be the 3rd person I have wanted to see.  At the end of the day I have felt the need to find out as much information I can about my condition and if this means getting referred to 10 Specialists then that is what I will do.  Given the strain on the NHS I seem to have more time than my Oncologist and her team to find out information on my rare cancer.

From my own health point of view, I am currently seeing a nutritionist who is advising me over my diet and looking at what vitamins/minerals I need to top up.  I have also just started to see an acupuncturist, which I am finding very helpful especially whilst undergoing Chemotherapy.  I keep both informed about what the other one is doing for me as they are both trying to help me through my cancer.  My acupuncturist found that my spleen was also under a lot of stress, which I advised my nutritionist about who then gave me advice on how I could help my spleen by what I eat and drink.

I feel that I am now in control again of my future rather than my cancer or my Oncologist.  I am doing what I can to prolong my life and make myself feel better. 

I hope this article helps other people to question their diagnoses and the treatment they are being given.  I hope it enables them to take control of their lives.  After all you only get one life - so make the most of it.