Living with a Brain Tumour

1. Living with a Brain Tumour Theresa Wadeson * This presentation simply identifies how I have coped with having a brain tumour. Although I know it has helped me psychologically, it is impossible to isolate the impact individual actions have had on my tumour. All I know is that most consultants I have spoken to have identified that a positive approach to treatment and recovery seems to provide brain tumour patients with a better chance of treatment success.

2. Diagnosis

3. MRI - CT - Perfusion – measures blood flow and volume through the brain Scans

4. Epilepsy • Post biopsy - hourly for three days (anti-convulsant level was not up to a high enough level) • Post Radiotherapy - seizures stopped - reduced to a minimum level (400mg) of one tablet (Tegretol-R) after 4.5 years. • Post second surgery – seizures restarted – focal/partial seizures. • Further to starting Clobazam on top of the Tegretol and Kepra that I already take I am now seizure free.

5. Surgery • The type of surgery that can be carried out in any country is limited to the technical equipment and the training and experience of the surgeon. • Although going abroad costs money don’t be afraid of getting second opinions – speak to Brainstrust (a charity specialising in identifying and making available alternate consultant specialists for second, third opinions).

6. Radiotherapy • Mask making – Macmillan website • Consider a cold cap to cool your head after treatment – or a cold compress • Hair loss – there are some great synthetic and natural wigs on the market – take this as your chance to be the blonde/brunette/red head that you have always longed to be. • Long/short hair?

7. Chemotherapy • Natural anti-nausea remedies • Ginger (stewed/crystallized/tea) • Travel anti-sickness bands • Peppermint tea • Homeopathic remedies

8. Safe Information • DO NOT BELIEVE EVERYTHING YOU READ ON THE INTERNET e.g: www.yalecancercenter.org/news/2010releases/aug1810-chinese-herbal-recipe.html • DO NOT BELIEVE EVERYTHING YOU READ IN THE MEDIA • Build your own network of specialists/ professionals/charities/support groups/info day contacts to provide you with trusted information.

9. Impacts and coping strategies • Why me? • Join Brain Tumour Support Groups to talk to others with similar experiences • Online Brain Tumour forums/groups (several on facebook) • Macmillan/Maggie centres • Loss of independence- • Take control back of your life where you can • Information is empowerment, which in turn helps you take back control • Finely planned week • Electric Bike • Disabled Persons Railcard/ Bus Pass (linked to the epilepsy) • Allow others to help • Enquire into local alternative transport services (including council run schemes)

10. Impacts and coping strategies • Inability to work • Create an alternative sense of purpose and sense of achievement – make the most of your time off. • Alternative pastimes • Pass on your experience to others • Volunteer/take part in charity events raising brain tumour awareness and much needed money for research • Set your own personal targets • Tiredness • Don’t be afraid to take a siesta (they do it in Spain and they don’t need an excuse)

11. Help yourself – take control • Stop smoking/ drinking/ overeating/ unhealthy eating. • Look at your nutrition carefully: • Eat plenty of colourful food • Drink plenty of clean water (filtered or bottled) • Avoid caffeine • Avoid alcohol • Avoid fatty foods • Consider supplements • Exercise • Consider complementary treatments: • Acupuncture -Reiki -Reflexology • Homeopathy -Chinese Herbs - Yoga • Shiatsu - Nutrition *although these cost money you will find that many hospitals and cancer support units (Macmillan centres, Maggie centres, etc) will provide free sessions of some of these to those undergoing cancer treatment.

12. Set your own personal targets

13. References • Literature I have found useful: • Everything you need to know to help me beat cancer – Chris Woollams • The Rainbow Diet – Chris Woollams • The Cancer Directory – Dr Rosy Daniel • MacMillan guides (cover coping strategies, information on tumour types, treatments, travel and much more) – available on the MacMillan website and in hospital Macmillan and Maggie Centres • The FlipSide – Finding the hidden opportunities in life – Adam J Jackson • Websites I have found useful • www.macmillan.org.uk • www.canceractive.com • Brain Tumour Charities • Brain Tumour Research • Brainstrust • Hammer Out • Samantha Dickson Brain Tumour Trust

14. Living with a Brain Tumour -the carers perspective Graham Wadeson

15. Initially • Wow-what the heck is going on!!!!! • Theresa had a seizure last day of our honeymoon (Sunday night) • Scan Wednesday • Result Sunday-” Prognosis not good” • Started a new job 1 week after the results! • Brain surgery 2 weeks after the results!

16. “free-falling” • Feeling of complete “out of control” • Total change to life- • Personal-plans for the future • Professional • Nothing secure to hold on to-no datum

17. Emotions • Utter helplessness (nothing I can do) • Sadness • Guilt (at thinking about the worst-what if?) • Emotional (crying at work) • Out of control (change in life plans/style) • Irrational (capacity bucket) • Futility (new role-this really doesn’t matter!) • Anger

18. What I thought was expected • Staying strong • Showing no emotion • Difficult to unload as the one person you want to talk to, is the person it concerns • Don’t want to burden Theresa any more-what I am going through is a fraction of what she is having to deal with-more guilt

19. Turning the corner • Asked for help-counselling through doctor at work-Weird!!! But worth it • Important to get back some normality to life- regain control-do what you do • Got to look after you (the carer) - as no use to anyone if you are falling apart! • Recognition-all normal reactions • Not alone, talk- • to EACH OTHER • to others