The things we wish we had known.

Seizures

  • Seizures can cause a bigger deficit than the tumour itself.
  • They can come in a variety of forms. One part of the body moving, 'feeling funny', dizzy spells, full body seizures, loss of speech, flickering eye movements, mini-stroke like symptoms - face dropping, absence seizures.

Steroids

  • Steroids can cause cushings disease - lump on the back of the neck and large purple stretch marks.
  • Moon face can be caused by steroids.
  • They act very quickly and can make massive improvements to quality of life.

Diet

Sugar feeds cancer. It can have a massive impact on a tumour growing.


Food can act as a form of immunotherapy. We found a great nutritionist who taught us a great deal about the nutrients needed to help the immune system. her mother has co-written the book 'The Living Well with Cancer Cookbook' by Fran Wardle and Catherine Zabilowicz. This was written in support of 'Maggies'* and became a regular feature in our kitchen and aided us to cook meals that were targeted towards brain tumours.


This is not just a cookbook, it is as it says 'An essential guide to nutrition, lifestyle and health' for everyone. 

*Maggies - a charity which inspired the retreat for the trust.


We also had a list of vitamins to support the battle against brain tumours.

Immune System

Keeping vitamins and minerals in the body is vital to keep the immune system going. James managed well through his treatment which we believe is down to keeping his immune system strong.

Trials

Medical professionals have differing opinions on trials. Brain Tumour Charity and Brain Tumour support were fantastic at sending us information about trials. We also had a brilliant surgeon who supported trials and put us in contact with a research doctor. Do not be afraid to ask different specialists about trials. Our oncologist did not completely support trials. Brain Tumour Research conduct some great trials in Portsmouth. We had a chance to visit and see what was going on.

Communicating

As time went on, James struggled to communicate. Having a book of names and pictures allowed him to tell us what he wanted when he was struggling to speak. I would suggest putting one of these together as a just in case book. Things like yes/no, toilet (including wee and poo), names, types of food, alphabet, drink, friends, emotions, parts of the body, pains.


It may also help to use mackaton pictures and signs. It may be unnecessary but we had to create one as we went along. It would have been much easier to already have it in place.

Memory

James struggled with his short term memory. This would upset him a lot. Our saviour for this was the use of iMovie. We would take lots of pictures throughout the day and create a movie of what had happened throughout the day. James would watch these time and time again and it would make him feel better when he could remember small parts. We also tried to include humour.


Distraction - Sometimes going for a drive would be a good distraction. One of his friends also had a book made with memories of his life. We read this books time and time again. It changed his life.

Where to get help.

  • Macmillan
  • Marie Curie
  • Maggies
  • JCCT
  • St Andrews Hospice
  • Haven Team
  • Brain Tumour Research
  • The Carers' Support Service

Dealing with the word 'terminal'.

  • DNAR - a lot of medical professionals believe that cancer patients should have a do not attempt resucitation. The idea of this was very upsetting and the idea that in a car accident they would not have tried to save him. They cannot force you to have a DNAR and it may be advisable to make it clear that this is not a discussion to have in front of the patient. 
  • Prognosis - take these with a pinch of salt. They prognosis we were given were purely based on statistics and not on James' case. They also made us wait for dates. You can ask not to be told a prognosis and have this put on record.

Organ Donation

If you want to donate organs, speak to the organ donation team sooner rather than later. All areas differ on what is allowed and what it not. Moral dilemmas appear in different parts of the country and different people may give you different information.

Travel Insurance

Get a signed letter from your oncologist saying that they are happy for you to travel. It is very expensive. Terminal on insurance means with a prognosis of less than 6 months. The insurance company insuredwith are specialist in dealing with cancer patients.

Local Knowledge

  • Find out where the nearest hospital with a neurology unit it.
  • We found that local hospitals do not necessarily have much experience or knowledge about glioblastomas. You may know more than they do.
  • The same applies with specialist nurses and GPs.

Anti-seizure medications

Anti-seizure medication needs to be taken at the same time each day. These are strict timings ( I would suggest you keep them in the car/handbag for those days that you are out later than expected).


If things get worse ask for emergency medication. We were able to get emergency medication with a sryinge and needle. Keep these with you at all times along with your normal medication and some spare steroids. We needed this emergency medication out of the blue one day.

Permission letter

If comminication or memory are beginning to change create a letter giving permission to a named person(s) to speak on your behalf in a medical situation. We created one after a doctor had ignored James' wishes regarding prognosis and refused to speak to family and friends. This letter allowed us to stay in the hospital when needed, listen to all information as we knew James could not retain it. It is another things that you may never need but if you do it is worth having.


Make sure it says 'This is intended to be a legal document', it is signed, dated and witnessed.

Positivity

Time and time again we were told how much positivity supported James. His ambition to keep exploring the world kept him going.

Questions

Any questions that you may have, please contact us. We are not professionals in this field but may be able to offer advice or support.