The Chemo Club is so excited to get to know you!!! Please introduce yourself (Name, where you’re from) - What was your life like before undergoing chemotherapy?

Hello! My name is Stella, I’m 44 and I live on the South Coast of England. Before I became ill I was living a healthy life with my husband and two children, working for the NHS as a Psychotherapist.

Bring us along your journey – when were you diagnosed with cancer? What was your initial reaction?

In June 2021 I started experiencing pain under my right rib.  I went to the doctor and he sent me for an ultrasound which came back normal. The pain would come and go but on one occasion it became so intense I went to Accident and Emergency.  They kept me for 12 hours, identifying that my liver was not working properly but sent me home with the promise of an MRI in a few months. However, a few days later I had continued to experience pain and vomiting.  I couldn’t keep anything down. I spoke to the doctors who suggested that I go back to Accident and Emergency but I could not face another 12 hour wait so I went to a different hospital who admitted me.

I was in hospital for over a month whilst they carried out tests and it was becoming evident that there was something concerning occurring.  I was transferred to a different hospital, kept in isolation due to covid, with no visitors and after several weeks they told me I had a tumor in my Bile Ducts.

I had not seen my children for several weeks so I was allowed home for a weekend before surgery.  This was the hardest time of my life, being separate from my loved ones and being left alone to contemplate the high likelihood of dying.

On July 13th I had an eight hour operation to have two thirds of my liver removed, my gallbladder and my bowel reconstructed.

The operation was brutal and was followed by many months of pain and recuperation.

After a two month wait, I was told that the tumor was cancerous; cholangiocarcinoma and I would need to have chemotherapy.

I was completely shocked that I had cancer. I’m afraid I was one of those people who thought this was something that happened to other people.

What was your first chemotherapy treatment like? What treatment/treatments did you or are currently undergoing?

I am taking oral chemotherapy called Capecitabine.  I take tablets twice a day for two weeks and then I have one week off.  I have to complete eight of these cycles.  Oral chemotherapy can have the reputation of a lighter touch but many people report that it is harder to tolerate than IV chemotherapy because the side effects are so intense.  It is accumulative so the side effects get worse as treatment goes on.

Who did you turn to as your support system?

I am lucky to have very supportive family and friends but having a cancer diagnosis can be a very lonely experience.  Particularly when you have a rare cancer as I do.  I see a lot of support groups for people with breast cancer for example but I have felt very alone with my diagnosis.

What is something you wished you knew before starting your chemo treatment?

People told me that its “not that bad” but I have found it very debilitating. I have not been able to work and my life is nothing like it was.

 Have there been certain side effects that have been worse than others?

The fatigue is nothing like I have experienced before.  You aren’t just tired, you feel like you have no energy reserves, your tank is empty, burnt dry. I am on the 6th cycle and there are days where I can hardly move.

You also get really sexy side-effects such as flatulence, acne, weight gain and the brain fog is horrible.  I really feel like I’m losing my brain power but I’m told it does come back!

What are tips/tricks you have learned along the way to help with chemo side effects?

The sooner you can accept that you cannot do the things you used to be able to do, that some days having a shower may be your only achievement, the easier your experience will be.

You have to ask for and accept help.

Do you recommend any chemo friendly products?

Fluffy socks are a must!

 Any advice for other chemo patients?

Drink water, sleep when you feel like it, eat as well as you can. Try not to compare your story to others. Everyone’s journey is different.

Be kind to yourself. This is hard but you are giving yourself the best chance of a happy healthy future.