Supporting the

Neuroendocrine Cancer Community

WHEN THE DUST began to settle a little after my Neuroendocrine Cancer diagnosis, I began to look around for additional information, particularly help with handling my emotions and feelings around a cancer diagnosis. I spoke to NCUK which helped a lot, especially the NATTER support groups, and I also found the University of Bath Open Learning course on Living with Cancer.

The course teaches that the person should be treated, not the cancer. They explained, you can have 10 people with exactly the same medical conditions… but each will report different problems/symptoms. So never forget, we are all individuals with our own Neuroendocrine Cancer experience and what is right for one person, may not be right for another.

 

The Experts:

It took me a while to realise that once you are diagnosed with NETs, you are allowed to request a referral to one of the 13 NETs Centre of Excellence in the UK (if you are not already treated at one). The referral can be done by yourself, GP or your existing consultant. I live in Bath and now go to The Royal Free Hospital in London. Both my local hospital, and The Royal Free, now have dual responsibility for me, and the two hospitals confer about my treatment. I feel I have the best of both worlds in that I can stay local for routine things like blood tests, but my care is overseen in London by those who have many years experience treating this rare Neuroendocrine Cancer.

 

Financial & Practical Support:

It took me even longer to understand some of the helpful support services which I was allowed to access. For example, the Disabled ‘ Blue’ badge for reduced mobility, Personal Independence Payments (PIP), Attendance Allowance and so on. I would recommend using either the Neuroendocrine Cancer UK charity for help with these, or Citizens Advice Bureau and Age Uk as the forms can be complicated to do by yourself. They know the correct terminology to use. If you are sent for an assessment, always describe how you feel on your worst day. Have it written down and hand in the paper to the assessor as the experience can be a little daunting.

 

Employment:

If you are employed, Neuroendocrine Cancer now comes under the Disability rules for work. Your employer should make reasonable adjustments to assist you. Contact your employers to ask what help is available. Many of us continue to work. Companies seem to call the department which can help you by different names. For example, your request may be dealt with by HR, Personnel or Health and Safety etc.

 

Travelling to Hospital:

I was amazed to discover that every hospital has a private company on contract to provide passenger transport. Sometimes, this can be to and from any where in the country, as well as to and from any hospital. To access it, you can contact the PALS/ Patient Liaison and Advisory Service of your normal hospital. You may even be able to self refer. I was asked a list of questions like my age (I am 70), was I able to use the train or other public transport, or could my friends drive me? I live in Bath and have to travel to the Royal Free in London. But the reserved seats are at the back of a 10-plus carriage train and it’s a long walk and I get fatigued, and also may need to use the toilet at very short notice. Once at Paddington I would have to walk a considerable distance to get a taxi or go outside the station to get a bus, and I get travel sickness. There are days when it can all feel too much. So if you make a transport request, give what is the worst day for you.

 

Your Hospital:

Ask if you have been assigned a specialist nurse. If so, keep the contact details to hand at all times. Do the same with the secretary’s details for your NET team. You may never need to use them, but if you know them, it will save you stress in an emergency. Ask if your Centre of Excellence requires blood tests, scans. My experience is that if the request from the Centre of Excellence, goes to another Hospital. It goes into the system and can take months for the appointment. If your Consultant at your local hospital, requests it, it gets done.

Find out who deals with blood tests, or (if you have one) your 24-hour urine test. For example, a gut hormone blood test requires that you fast the night before. Once the blood sample has been taken it has to go on ice and then straight to the lab. Another example, is the 24-hour urine test – ask how you obtain the container, then get it to the lab. Each hospital has separate procedures. And in my experience, if the correct pathway is not used, the sample is rejected.

 

Thank you:

Lastly, I always thank whoever has been looking after me with biscuits, chocolate or fruit and even though they tell me I shouldn’t, I still do, because it is my way of saying:  “thank you, for what you have done for me.”