Our Patient of the Month for May is James. Here is his story:

GISTory

James, United Kingdom

The diagnosis of my GIST was not immediate and wasn’t confirmed until after it was removed. In January 2019 I started feeling light-headed at work and my vision was bad. I decided to leave work early and stayed home for a day without improvement. The following evening, I was in the hospital emergency room receiving a blood transfusion for extremely low haemoglobin, caused by what I would later find out to be a GIST bleeding through my duodenum.

I was in and out of hospital for the next few weeks having various tests, including a CT scan and before I knew it, I was scheduled for elective surgery to have a Whipple Procedure, removing my duodenum, part of my pancreas and gallbladder.

Everything happened quite fast and I remember feeling unclear about the situation and how it was progressing. The surgery really took a lot out of me and recovery was long. I lost a lot of weight (I’m slim anyway) and so looked really bad. I cried a lot when arriving home and seeing myself in the mirror. Some weeks after, the tumour they removed was confirmed as a GIST with the max dimension as 5cm. There was no evidence the tumour had spread.

I continued recovery remarkably well and my digestion and overall physical health improved dramatically. I am now back almost to my original weight and eat pretty much anything I want. The only difference between now and before the surgery is that I try to eat relatively healthily, due to potential malabsorption.

Coping With a GIST Diagnosis

Coming to terms with GIST started after the surgery. The schedule of scans, the medication (and side effects), the uncertainty about the future, the stories from other patients and having treatment for a rare disease where not all of the answers are known has been a challenge and unfortunately one I have had to accept. I will say that whilst I think of GIST every day, there are a lot of times where I don’t think about it at all. Keeping yourself busy and moving forward with your life is really important.

I have a couple of practical ways I look at it – one being that I’m extremely lucky. Things could have been much worse. During the weeks and months, I was in hospital I saw others who were not so lucky. I am really grateful that I made it through the surgery and have recovered very well. I’m able to work, travel and have a more or less normal life for someone of my age. Not many people know what I’ve been through and that I disappear for a few hours now and then for doctors’ appointments and scans.

The second way I cope is to understand that none of us, both those with and without GIST, have any guarantee on the future. The journey of coming to terms with this is something we all must do and I figure if I wasn’t doing it at 35, I’d be doing it soon enough anyway. Coming to terms with my mortality has been liberating in a way. I’m still learning how to make the most of this “superpower” and take things less seriously.

Advice for Fellow GISTers

The practical advice I have is to understand the specifics of your GIST and take steps to ensure you are doing what’s best for you. For example, due to my age I asked to reduce the number of CT scans whilst on adjuvant treatment. I’ve recently been asking a lot of questions about extending adjuvant treatment beyond three years to understand the risks / benefits of that.

Hobbies I Enjoy

Hobbies I enjoy include playing the guitar and making music. I also like getting out on the road and taking road trips. During the pandemic I took two long trips across Europe driving through the mountains in France and Switzerland.

Motto

The quote I will share is from the movie Ferris Bueller’s Day Off – “Life moves pretty fast. If you don’t stop and look around once in a while, you could miss it”.

Each member story reflects the individual patient’s experience. GIST is not one disease, but a family of diseases and each patient has a unique set of symptoms and manifestation of the disease.

Click here for ideas on how to participate in our It’s Time to Tell the Stories Campaign!

read more member stories

 If you want to be our Patient of the Month or Caregiver of the Month, please see the criteria below.

Criteria for Patient of the Month

  1. Patient must be a member of the LRG GIST Patient Registry
  2. Patient is an active member of the Patient Registry, continually providing medical updates
  3. Patient’s record should be at least 80% up-to-date
  4. Patient has GIST Patient Registry Online
  5. Patient must agree to provide consent to share his/her story to our GIST community on our website and social media

Criteria for Caregiver of the Month

Caregivers are an important team of family and friends. They allow a patient to depend on them for support through their difficult journey as well as help with various tasks such as cooking, housekeeping, transportation and so much more. In conjunction with Life Raft Group’s Patient of the Month, we are showcasing Caregivers of the Month. We want to hear stories of the selfless supporters that stand beside our GIST warriors.

Interested? Contact Sahibjeet Kaur, Director of Data Mgmt. & Research, for more information: skaur@liferaftgroup.org