My day today - I am starting to feel better

It was a delight to take Martha and Katy to school.  I was particularly happy to see Elsie, who I have not been able to talk to for months.  Thank you all for kindly ignoring me.  Martha and Katy were in excellent spirits of course.

Anna Friendenthall came to visit and we talked about how I share my news with Martha and Katy.  I have ordered a book called Bag of Worries, called the Beechwood Centre to check that they have received my referral for family counselling, and have very clear ideas about how to present my illness with the girls.  I have a little tumour left in my brain.  I will follow treatments that will make me feel ill.  The treatments will stop the tumour from growing.  Anna also suggested that I talk with Martha and Katy separately, because they will ask different questions, and have different perspectives.  We will start this over the weekend.

Another good friend of mine dropped in late afternoon.  Julie Miskelly - who is from North Trafford School Sport Partnership.  Great to see you. :)

Around all this, I am starting to feel a lot better.  I cooked Martha and Katy pasta for their lunch box.  I made Katy a birthday cake, and she helped me to decorate the cake.  Loads of cooking!   I washed up.

I still had to have a sleep at lunchtime.

So, I hope to take Martha and Katy to school in the morning.  

See you all soon

Sarah xxx

Thank you for the gifts

 

Thank you to Sarah McCallward for this beautiful angel.  She watched me through the operation. 

Louise, Steve, Luca and Cara sent me some lush Burt's bees cream and lip balm.  I will enjoy this :)


Chris, Sarah, Finlay and Isaac, sent us some fabulous cakes.  I will add photo tomorrow.  Chris Arnold is Dave's business partner.  Thanks for the gift Chris, and I look forward to seeing you all soon. 

love you all

Sarah Xxx

Understanding steroids

Understanding steroids

A guide for patients with a brain tumour

How can steroids help when you have a brain tumour?

When you have a brain tumour you can develop symptoms. These symptoms depend on the position of the tumour in the brain and may include weakness on one side of the body, memory problems or difficulty with speech and language. Symptoms are sometimes worse when there is swelling around the tumour. This swelling is also called cerebral oedema.

Cerebral oedema is a collection of fluid in the brain tissue surrounding the tumour. It can also occur after any injury to brain tissue.

Tumours inside the skull are growing in a confined space. The tumour and cerebral oedema can create pressure inside the skull which may cause symptoms. Often the symptoms will be similar to the ones you had when the tumour was diagnosed.

Some people have headaches and nausea. This indicates that there may be some swelling around the tumour and pressure inside the skull.

Steroid medication reduces cerebral oedema (this means swelling in the brain) and can improve symptoms.

What are steroids?

Steroids are naturally occurring hormones. The steroids produced by the body are called corticosteroids and their actions are very complex. They are produced in small quantities by the adrenal glands.

Your body controls the amount of natural corticosteroid it needs to function normally.

When you have cerebral oedema, the body needs more corticosteroid that can be produced naturally.

Your doctor may prescribe an artificial corticosteroid (steroid medication) to reduce the swelling around your tumour and improve your symptoms. Steroid medications do not treat the tumour.

The steroid medication most commonly prescribed to treat cerebral oedema is dexamethasone.

The steroids used to treat cerebral oedema are different from anabolic steroids which are used by some athletes to build muscle.

 

When will steroids be prescribed?

Steroids may be prescribed at different times:

— When cerebral oedema is seen on your brain scan

 

— Around the time of surgery

 

Cerebral oedema can occur at the time of surgery. Steroids may be prescribed before or after surgery. Your steroid dose may be reduced and stopped over a period of days as the swelling reduces after surgery.

— Around the time of radiotherapy

 

Radiotherapy treatment can cause cerebral oedema. Steroids may be prescribed during and/or after treatment.

— Around the time of chemotherapy

 

You may have chemotherapy as part of your initial treatment and/or at a later date if the tumour is growing.

— Any time you have problems which are thought to be caused by cerebral oedema

 

What are the side effects of steroids?

The side effects experienced vary from person to person. These are usually more noticeable when you are on a higher dose or when you have been taking steroids for a while.

Below is a list of the more common side effects with advice on how to cope with them.

— Problems with sleeping (I struggle with sleeping)

 

To reduce the effects of difficulty sleeping (insomnia) take your tablets in the morning. If you are prescribed steroids twice a day, take them in the morning and early afternoon.

— Increased appetite leading to weight gain (I have been happy to eat lots of fruit.)

 

You may have cravings for sweet food and an increased appetite. Try and keep to a healthy balanced diet, although some weight gain may be unavoidable. Information about healthy eating is available from Macmillan.

— Changes in your mood

 

Steroids can affect your mood. You may feel irritable, agitated, depressed or have mood swings. This should return to normal when the dose is reduced, or steroid treatment finishes. You may need additional help to deal with these effects. Discuss any concerns with your specialist nurse or doctor. (I have suffered from massive mood swings – from scary nightmares to uncontrollable giggling)

— Irritation of the stomach lining

 

You may experience heartburn or indigestion. Take your tablets with food or a glass or milk. We may prescribe additional medication to protect your stomach lining. Tell your specialist nurse or doctor if you are experiencing heartburn or indigestion.-(I have been taking a drug every day to protect stomach lining)

— Increased thirst and frequent urinating

(When I need to go, I have to go.  I cannot wait.  Delighted to read this because I did not understand that my need to wee was linked to the steroids.)

 

— Muscle weakness in the upper arms and legs (thighs)

 

You may notice that it is more difficult to perform daily activities such as climbing the stairs or getting out of a chair. The steroids cause this weakness. It is called ‘proximal myopathy’. It is more likely to be a problem if you have been taking steroids for a number of weeks or months. (my jelly legs must be caused by the steroids.  Again, I am delighted to read this.)

— Interruptions to the menstrual cycle

 

Your menstrual cycle may become irregular. This usually returns to normal once steroid treatment has finished. It is not advisable to become pregnant when you are taking steroids. Please discuss any concerns regarding contraception or pregnancy with your specialist nurse or doctor. (I don’t know about this yet because I menstruated at same time as operation)

— Changes in the skin including bruising, stretch marks and acne

 

The side effects of steroids can cause changes in your appearance. (I have a new acne on my chest and in a couple of parts of my body)

 

Increased risk of infection and delayed healing

 

Steroids can affect your immune system and increase your risk of infection such as oral thrush (fungal infection), urine infections and chest infections. Tell your specialist nurse or doctor if you have:

Ÿ a raised temperature

Ÿ flu-like symptoms

Ÿ delayed healing of cuts or wounds

Ÿ pain or stinging when passing urine

Ÿ persistent cough

Ÿ a sore mouth

 

Avoid coming into contact with people who have a cold or other infection. Tell your specialist nurse or doctor if you think you have been exposed to shingles, measles or chicken pox - as you may need additional treatment. (no problems here)

 

Steroid doses

The aim of steroid treatment is to reduce the symptoms of cerebral oedema, using a dose

of steroids that will not give you too many side effects.

Steroids can be taken over a number of days, weeks or months. You may be prescribed a ‘maintenance dose’ or a ‘reducing dose’ of steroids. (My dose of steroids has been reduced today to just 2mg in the morning.)

 

 

What is anaplastic oligodendroglioma?

Oligodendroglioma

An oligodendroglioma is a type of brain tumour. This information is about oligodendrogliomas, their symptoms and treatments. It should ideally be read with our general information about brain tumours|.

Brain tumours Back to top

The central nervous system (CNS) is made up of the brain and spinal cord. Cells in the CNS normally grow in an orderly and controlled way. If for some reason this order is disrupted, the cells continue to divide and form a lump or tumour.
A tumour is either benign or malignant. Benign tumours can continue to grow but the cells do not spread from the original site. In a malignant tumour, the cells can invade and destroy surrounding tissue and may spread to other parts of the brain.

| Diagram showing the lobes and functions of the brain                      

Oligodendrogliomas Back to top

Within the brain there are nerve cells, and cells that support and protect the nerve cells. The supporting cells are called glial cells. A tumour of these is known as a glioma.
Oligodendroglioma is a type of glioma that develops from cells called oligodendrocytes. These cells produce the fatty covering of nerve cells. This type of tumour is normally found in the cerebrum (the white area on the diagram above), particularly in the frontal or temporal lobes.
Oligodendrogliomas are divided into two types:

• A well-differentiated tumour, which grows slowly.
• An anaplastic oligodendroglioma, which grows more quickly.

Tumours affecting the central nervous system (CNS) are fairly rare. Each year about 4,700 people in the UK are diagnosed with tumours of the CNS. Around 1 in 20 (5%) of these are oligodendrogliomas. This type of tumour is more common in adults, but it can occur in children.

Grading of oligodendrogliomas Back to top

Grading refers to the appearance of the tumour under a microscope. The grade gives an idea of how quickly the tumour may grow. Grade 2 is low-grade and grade 3 is high-grade (anaplastic). There is no grade 1.

Causes of an oligodendroglioma Back to top

As with most brain tumours, the cause of oligodendroglioma is unknown. Research| is being carried out into possible causes.

Signs and symptoms of an oligodendroglioma Back to top

People with slow-growing oligodendrogliomas may have mild symptoms for several years before the tumour is discovered.
The first symptoms of any type of brain tumour are usually due to increased pressure within the skull (raised intracranial pressure). This may be caused by a blockage in the ventricles (fluid-filled spaces of the brain), which leads to a build-up of cerebrospinal fluid (CSF). CSF is the fluid that surrounds the brain and the spinal cord. This increased pressure may also be caused by swelling around the tumour itself.
Raised intracranial pressure can cause headaches, sickness (vomiting|) and visual problems. Fits (seizures) and changes in behaviour and personality can also be general signs of a brain tumour.
Oligodendrogliomas can grow in different parts of the brain, and symptoms may relate to the area of the brain that is affected:

• A tumour in the frontal lobe of the brain may cause gradual changes in mood and personality. There may also be paralysis (inability to move) on one side of the body. This is called hemiparesis.
• A tumour in the temporal lobe of the brain may cause problems with coordination and speech, and it may affect your memory.

Tests and investigations for oligodendrogliomas Back to top

Your doctors need to find out as much as possible about the type, position and size of the tumour, so they can plan your treatment. You may have a number of tests| and investigations.
The doctor will examine you thoroughly and test the power and feeling in your arms and legs. They will also test your reflexes.
Your doctor will look into the back of your eyes using an ophthalmoscope. They can see if the optic nerve at the back of the eye is swollen. This can be caused by oedema (swelling of the tissues within the brain), which may occur due to an increase in the amount of fluid in the brain.
A CT scan or MRI scan will be done to find the exact position and size of the tumour.

CT (computerised tomography) scan

A CT scan takes a series of x-rays that build up a three-dimensional picture of the inside of the body. The scan is painless and takes 10-30 minutes. CT scans use small amounts of radiation, which will be very unlikely to harm you or anyone you come into contact with.
You will be given an injection of a dye, which allows particular areas to be seen more clearly.           

MRI (magnetic resonance imaging) scan

This test is similar to a CT scan but uses magnetism instead of x-rays to build up a detailed picture of areas of your body.            
                         

Biopsy

To give an exact diagnosis, a sample of cells from the tumour (biopsy) is sometimes taken and examined under a microscope. The biopsy involves an operation.

Notes from oncology neurology meeting

Meeting with oncology neurology team.

My mum has joined me in this meeting.

The staff present were:

·         consultant Dr Catherine McBain

·         social worker Diane Aldridge   0161 206 4820

·         Sara Robson who works for Salford Royal and Christie hospital.  07827955047.

We talked through my symptoms leading up to finding out that I had a tumour.  These are written on 24th June, if you want to have a look. 

We talked through what happened in the operation, and what they have found.  My tumour is Anaplastic Olgedroglioma.  

During the meeting the consultant received information that it does contain co-deleted 1p….   This means that it will respond to chemotherapy.  I will have both radiotherapy and chemotherapy.  I do not yet understand chemotherapy – I became too tired to take this in, so we stopped the meeting.

Radio therapy

This is “deep x-ray” treatment.  It will start 3-4 weeks from now.  Every day for 6 weeks, I shall attend Christie hospital for treatment.  The x-rays will be aimed at the remaining tumour for 10 – 15 minutes every day.

The effects of the treatment will be that the tumour will stop growing.

The short term side effects will be:

·         headache

·         nausea

·         altered sense of taste

·         possibility of underactive pituitary gland

The long term side effects will be

·         short term memory loss. 

This will become an ongoing condition that I will have to learn to live with.  I suffered from this prior to removal, so know for example, that google calendar will send me reminders of things every day.  I will get support from a psychologist to help me put other methods in place to help me adjust to this condition.

A mask will be used for radiotherapy sessions.  This mask will be made for me next week.  I go to Christies to be measured up.
 

Ongoing monitoring

I will receive regular MRI and CT scans.  These scans will be used to monitor progress and to assess the next steps.

Review meetings (Multi Disciplinary Team) take place every week.  My therapy will be reviewed at these meetings and I will be sent a copy of the review to check it is OK.

Salford Royal/Christies staff member

I was given a big pile of information, for example:

·         A leaflet explaining Anaplastic Olgedroglioma

·         Understanding Steroids

·         Understanding brain tumours (Macmillan)

 

Also

• brain tumour support group
• specialist brain and CNS tumour rehabilitation AHPs (I have no idea what CNS is or AHP!) This is a team of physios, podiatrists, speech and language therapists. 
• Brain tumour UK support services guide.

We asked for information for the children, and I am told that there is a really good Macmillan cartoon based leaflet for them.  I have not received it yet.

I let them know that I have filled in a referral for the Beechwood Centre, so that we can have some family counselling.

Social Services

I am entitled to apply for financial help and help at home, should I need it. 

I was given leaflets to look at:

• help with the cost of cancer (macmillan)
• Patient transport services

Alternative therapy

Dr McBain was quite dismissive of these treatments.  I explained that I was looking to balance radiotherapy and chemotherapy with a healthy lifestyle.  Dr McBain was positive about aromatherapy and reflexology, but nothing else.  I will research this separately.

Ongoing support

Alison Hope 206 2073   alison.hope@srft.nhs.uk

I let them know that no other support teams had been in touch eg community nurse, GP, occupation health team.

Herm holiday

Travel insurance permitting, I do have permission to go to Herm for a short break with Dave, Martha, Katy and Grace (cousin).  I will research this some point soon.  I cannot say whether I will go or not until I know the cost.  Guernsey is not NHS and I have to be prepared for needing a hospital.  In Guernsey there will be a charge.

 

Sarah eats cake

My new consultant has just warned me that steroids make many people eat lots of sweet things.  I have just told her (honestly) that this isn't happening to me.  I have been eating fruit and enjoying it.  In hospital café I have demolished an M&S layered prawn cocktail, and then consumed two pieces of cake.  Delicious!!!!