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If the human brain were so simple that we could understand it, we would be so simple that we couldn’t.

Emerson M. Pugh

Working towards wellness

"For many patients recovery begins at the point of diagnosis".

Professor Peter Black Living with a Brain Tumour.

Once the cause of the symptoms has been determined, it can be treated and the patient can be assisted with getting back to their lives. But this is not without a period of adjustment to what can be profound changes. And this is what is missing from current support.

Cancer survivors are at greater risk for recurrence and for developing second cancers due to the effects of treatment, unhealthy lifestyle behaviours, underlying genetics, or risk factors that contributed to the first cancer.

Common sense tells us that there are basic things we should do to avoid recurrence and to improve survival and quality of life:

  • No smoking
  • Be active and maintain a healthy weight
  • Stay active

But we think survivorship goes far beyond this. Here are some things to raise with your healthcare professional. And if they look aghast, don’t be deterred. The more we can raise the issue of survivorship the more it will be on the radar. And the more information you have, the better you will be able to cope. So ask about:

  • A follow-up plan of care that includes a schedule of recommended follow-up visits, screenings, and medical tests and specifies which providers will be responsible for care.
  • Possible delayed effects of treatment. Nobody told me that 4 to 6 weeks after head and neck radiotherapy I (Helen) would be drained of any energy. If I had known, I wouldn’t have gone back to work quite so soon. Having a shower in the morning meant I had to go to bed for a couple of hours to recover.
  • The importance of seeking timely care in response to certain signs or symptoms. Stop worrying and get it checked.
  • Emotional wellness after cancer and identifying available resources for additional support, if necessary. Coming through the ‘other side’ should feel good, but there is a sense of loss, almost bereavement, as well. Suddenly your life is no longer filled with those reassuring appointments where you can ask about the slightest thing. You are not required to attend daily radiotherapy appointments. People around you expect you to be as you were, but of course you are not. This is more than a physical change; this is life changing.
  • Lifestyle changes recommended for improving health and well-being after cancer.
  • Developing an effective support system that meets survivors' medical and emotional needs.

There is a wealth of resource out there into which you can tap, but it is pretty much as the quotation above states – you have to be proactive and seek the support that you need. Here are some ideas to consider:

Strengthening your body

Getting back on your feet is no easy task after receiving the body blow of being diagnosed with a brain tumour. Food is important and yet the last thing you feel like is food (actually Guinness worked for me, and still does!).

Ask to see the dietician or nutritionist – hospitals should have one. Don’t wait until you are sick or losing weight; better to have a healthy diet from the start so that you are strong if you should become nauseous. And if you have radiotherapy you will lose weight.

Occupational therapist
This is a professional who is trained to help you resume the activities of daily living. They will identify your strengths and then work with you to address the gaps.

Trained to assess and improve your muscle strength, ability to walk and other physical problems, this person is well equipped to get you back on your feet!

Neuro – ophthalmologist
Your brain tumour may interfere with your vision and this person will be able to measure the impact that your tumour is having on your vision. They have expertise in both the vision and the brain.

For more information about these people and other people who may help, download our Have You Lost Your Way booklet.

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Strengthening your mind

The toll of a brain tumour diagnosis is unimaginable. Not only is there the emotional upheaval which is aligned with this but then there are also the problems that can come with having a brain tumour – memory loss, changes in behaviour, depression, anxiety, alteration in judgment and insight, slowing down in ability to process information. It can make you struggle with your identity. So there is a sense of loss – you are not the person you were. And yet you look the same. It isn’t as if you have a broken arm, which can easily be seen. But there are people who can help you to meet these challenges. Click here and download our Have You Lost Your Way booklet for more detailed information.

This person can assess your cognitive difficulties and work with you to help you regain some of what has been affected. It is quite good to establish a baseline so that you can measure any improvement or deterioration in cognition.

Collaboration is key with a psychiatrist as they can work with the MDT (multidisciplinary team) to work out whether mental and behavioural symptoms are the result of a brain tumour, a psychological or stress reaction to the tumour, side effects from medication, or the effects of some other treatment. They can also offer psychotherapy as well as drug therapy, but they do need to work as part of your team.

Don’t underestimate the value of this person. They can sometimes be overlooked but they do have at their fingertips a wealth of resources which may help you.

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Support groups

Not for everyone and sometimes only for a short period. But support groups can be really good at letting you know you are not alone. You can share information and hope, find mutual support and discover new ways to cope. Some are more adaptive than others. However, they can also cause feelings of depression and guilt, particularly if one person is doing poorly. It depends how well managed the support group is. For more information about support groups, click here.

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Writing it down

A good way to clear your head. Treat yourself and buy a good notebook (Moleskine books are my favourites) and a decent pen or pencil. Track your thoughts as and when they occur; don’t make this a regimented exercise. It is a reflection journal and a good way to express fears and frustrations. Other, more public methods include email, twitter and blogs, which can be therapeutic for you and for others. We found Meg’s blog in Boston invaluable; it helped us to maintain contact with home and let friends and family know what was happening. It also saved money on phone calls. Read Meg’s blog here.

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Complementary therapies

Words of warning (how I hate these). Do not take any alternative medicines without consulting your doctors first. They might seem harmless and are freely available, but they can interfere with conventional medicines. For example there has been dialogue recently about green tea, which had been thought beneficial for patients with cancer. Now unpublished research may suggest that it actually works against cancer therapies, thus reducing the effectiveness.

Massage, acupuncture and chiropractic care
These may help to alleviate pain, but can work out to be expensive. They can reduce neuropathy, headaches, insomnia, anxiety, depression and nausea, but always check that is safe for you to have these treatments. They can increase the risk of blood clotting, bruising, bleeding and infection.

If acupuncture appeals you cannot have it on skin which has been subjected to radiotherapy and your blood count has to be high enough to fight off infection. But research shows that this therapy is used with good results.

Naturopathy and homeopathy
These should only be part of an integrated programme at a recognised institution and seen as part of the holistic package. You must be sure that there are no adverse interactions with other medicines.

Yoga, meditation and prayer
These are good for stress reduction and can help you to accept what is happening – the here and now. Meditation works particularly well with fear. The present moment is where we have control; forget the past and don’t worry about the future. Meditation can also help you through tricky moments, like MRI scans and radiation therapy.

Energy therapies: reiki, magnets and qi gong
These therapies work on the manipulation of energy fields within and around the body and can be beneficial, promoting sleep and healing, and easing confusion and anxiety. Qi gong is a form of low impact exercise, which can be done while standing or sitting and so is useful for people with physical disabilities.

Music and art therapy
Music and art express emotions that are beyond words. These therapies cross domains of functioning: physical, cognitive, emotional, and spiritual. It is important to ensure that therapists are validated and not just trying to exploit patients. And the creative space is an important aspect of therapy work too.

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I like nonsense; it wakes up the brain cells.
Dr Geisel aka Dr Seuss

Laughter is one of the oldest and most effective therapies. And it’s free! Remember that old saying “laughter is the best medicine’? Well it is. Get laughing.

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How good is my survivorship plan?

If you are unsure about the answer to these questions, then there are gaps in your survivorship plan. Call us for a chat. We don’t always have the answers, but we may know someone who does.

  • Are you receiving the best possible treatment?
  • Are you getting back to as normal a life as possible?
  • Do you have easy access to the right information, tailored to your needs?
  • Do you have financial security?
  • Are you confident that any recurrence of cancer or any long term effects of treatment will be dealt with without delay and effectively?
  • Are you confident you will be involved in any decision making, if you want to be?
  • Do you have the confidence and skills to manage your condition yourself?
  • Are your carers/loved ones included, if they want to be?

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