On Wednesday last week, GIST Support UK’s intrepid trustee Terry Weldon was in Leeds for a “Sarcoma Survivorship” event, hosted St James hospital sarcoma team. Terry was there to contribute – and also to learn and has reported on what he learned at the event as follows:
After cancer, life does not return to “normal”.
Suppose you have been treated for cancer for some time, and the day comes when your doctor says you are now cured, no longer need treatment, and can return to normal. Should you be pleased?
NO! It’s good to be NED – but life after cancer can never go back to “normal”. One presentation was devoted to a program run by St James for continuing care, after the end of formal “treatment” for cancer. Other speakers stressed that they serve anyone who has ever been affected by cancer, now or in the past.
Cancer Care Must Be Holistic.
Only one contribution dealt with physical care, by a specialist sarcoma physiotherapist, on the importance of regular exercise. Most speakers spoke primarily about things like emotional support, quality of life interventions – and financial planning.
Carers Need Support, Too.
As patients, we can access support from a wide range of specialists. Who can our carers turn to for their own support? They also endure stress, with no obvious sources of help.
The speakers all pointed out that their services are available to family or other carers as well as patients. The opening quiz asked: “Can patients’ family members get help from a sarcoma nurse?” Answer: Yes – they are there to help family as well as patients.
Specialist Nurses are Awesome!
I clearly recall how very thankful I was right at the beginning of my journey, to have access to two superb nurses, who were constantly present to offer reassurance and support, and information to guide me through the confusing and bewildering steps I was going through as I was beginning to navigate my way through the process and physical environment. St James Sarcoma Centre has an equally valuable team of nurses available, both within the sarcoma centre, and also working in the various satellite support units.
Terry presented his own personal experience of GIST to the patients, family members and specialists attending the event and received positive feedback. A copy of his presentation can be viewed here.
We would like to thank Sarcoma Nurse specialist Josie Pawson for inviting us to present at this event. Terry was impressed by the work that is being done by the St James team, and especially the nurses.
We look forward to meeting you all again at our GIST patient & Carer meeting which is being held in Leeds on 4th October 2019.