Discharge Guide for Patients with a Brain Tumour
This leaflet provides information and answers to questions often posed by patients following brain tumour surgery. Going home can feel a bit overwhelming. You will have a lot of information to process and we are aware that you may have additional questions, or may want more detailed answers. If this is the case you can contact the Clinical Nurse Specialist (CNS) team on 0151 529 5648
Going home - Next steps
Often, biopsy results confirming tumour type will not be available at time of discharge. You will be contacted to come to clinic to discuss this. This appointment is usually arranged by your CNS or Consultant’s secretary. They will contact you by phone. This can be a difficult time and you may need to talk about how you’re feeling following surgery. The nurse specialist team are here to help and are happy for you to contact them for advice and support.
Some people recover very quickly following surgery, others take longer. No two people will feel exactly the same. Most people experience some common symptoms. We have listed these below:
- Tenderness and numbness around wound area.
- Mild headache. This should be relieved effectively with simple painkillers such as 1 Paracetamol Both of these symptoms should improve a little each day.
- Swelling / bruising This will gradually resolve in the days or weeks ahead. Bruising and swelling may be seen around the eyes and face which can appear alarming but this isn’t a cause for concern. 1 This will be prescribed as part of your discharge medication WCFT d/c leaflet AR/CC 2018
- Tiredness(fatigue) Tiredness is very common following any brain surgery and regaining good energy levels can take some time. Some tips to help with this are: o Allow yourself time to recover and don’t expect too much too soon
- Try to build up your stamina and exercise tolerance gradually, a gentle walk can be a good place to start
- Allow time to rest
- Eat a balanced diet
- Remember – exercise is good for you and will help with your overall recovery If you find that this symptom continues in the months ahead you should contact your clinical nurse specialist for further advice.
- Noises or whooshing sensation During your recovery time you may notice some unusual sensations in your head as things are settling down. These are often described as “crackles, pops, whooshes or drips”. If you have had surgery near your ear, you may experience a dull earache. All of these symptoms will settle down over time.
Symptoms to watch out for once you are home that may need medical attention
- Your wound becoming red or sore or leaking any fluid or pus. If it’s leaking clear fluid or pus you will need to attend the Walton Centre so that we can assess it more fully.
- A soft fluid-like swelling behind or close to the scar may develop. This is a collection of brain fluid accumulating under the skin and is called a pseudomeningocele. This will usually settle on its own but please ring us for advice.
- Nausea or vomiting
- Worsening or severe headache
- Increasing number or change in seizures (epilepsy).
If you experience any of these symptoms listed above you should contact us straight away
Clinical Nurse Specialist (CNS) team: Direct line 0151 529 5648 or via bleep. Ring switchboard 0151 525 3611 and ask for bleep 5370 or 5391.
Skull base Clinical Nurse Specialists (CNS): Direct line as above or bleep 5342
Outside of office hours if you need advice, please contact Cairns ward on 0151 529 5638 or 5637.
Frequently Asked Questions
When will the stitches (sutures) or clips be taken out?
Usually 7-10 days after surgery. This will usually be done by the district nurses who visit you at your home or you can attend your local treatment centre, depending on services available in your area. If you have had previous surgery or radiotherapy these may be left in a little longer. This will be clarified with you prior to going home. The ward staff will tell you the date your stitches or clips are due to be removed and who will be performing this.
Do I need to keep taking my steroids after I go home?
Yes. It’s important that you keep taking your prescribed dose of Dexamethasone2
You will be given specific instructions to either:
- Reduce the dose over a set time until you are no longer taking any steroids or
- Reduce to a specified dose of Dexamethasone tablets until your clinic appointment. Note: Ensure you continue with the stomach protecting tablets whilst taking steroids. If you require more detailed information about this medication please refer to the leaflet ‘Understanding Steroids’3 included in your information pack .
Do I need to keep taking my anti-seizure medication after my operation?
Yes. This is very important and you should continue to take this even if you haven't experienced any further seizures. Some patients require long-term anti-seizure medication, others for just a few months following surgery. This should only be stopped on the advice of your medical team and should be continued unless you have been advised differently by your Consultant.
While I was in hospital my blood sugars were checked every day, do I need this checking at home?
Yes (whilst on Dexamethasone) If you are still taking Dexamethasone at home the ward staff will arrange for your local district nurses or practice nurse to monitor your blood sugars at home. They don’t necessarily have to be checked every day; the frequency of checks will depend on what your blood sugar levels were during your hospital stay. Repeat prescription of Dexamethasone can be obtained from your GP
When can I wash my hair following surgery?
You need to wait for a minimum of 48 hours. When washing your hair you should use a gentle shampoo or the hair wash provided to you before coming into hospital. Be careful not to rub around the wound area. It’s not a problem if some water runs onto the wound, you can gently pat the area dry with a clean towel. If there has been any leakage from the wound or you have had previous surgery you may be advised to wait a little longer before washing your hair.
When can I dye my hair again?
You need to wait at least 6 weeks. This will ensure your wound is fully healed. However, if you are going to be starting chemotherapy or radiotherapy, you will need to discuss this with your Oncologist.
How long is it before I can fly?
There is no specific guideline regarding the minimum time before you can fly. The general advice from The Walton Centre however is to wait for around 6 weeks from your operation. Due to the altitude and change in cabin pressure during a flight flying before this time may cause a notable headache, most patients prefer to wait to avoid this. Note: If you are going to have any additional treatment it is advisable to discuss this with your Oncologist. This will ensure that your travel plans don’t coincide with your treatment.
When can I drive again?
This depends on a range of factors including: The type of tumour you have, the type of operation and the symptoms you have been experiencing. This can be very difficult to adjust to but it is very important that you do not drive. Driving restrictions are stipulated by the DVLA. You will need to notify them once you have been given your final results about the type of tumour you have. The DVLA will advise you on how long you must refrain from driving.
You can find information about driving after brain tumour surgery in the leaflet ‘Driving and Brain Tumours’, included in your information pack
DVLA phone number: 0300 790 6801 Mon – Fri 8am-7pm Sat 8-2pm WWW.DVLA.gov.uk
When will I be able to return to work?
This will depend on: The type of tumour you have, your recovery following surgery, the type of job you do and any future treatment planned. Most people need a minimum of 6-12 weeks, although this can be longer if, for instance, your job requires you to drive, work at heights or with machinery or if you are having any additional treatment. You will be able to discuss this with your doctors and CNS to make plans that best suit your personal circumstances. If you are worried about financial issues there are lots of information points that you can access including benefits advice from Macmillan and the Brain Charity.
Will I need to have further scans following my surgery?
Yes. Following surgery you will have further scans. The frequency of these will depend on the type of brain tumour you have and will therefore be individual to you. Initially scans may be done more frequently but over time the interval between scans will become longer. The frequency with which your scans are done will be advised by your medical team.
A note from the therapy team
You may have seen an occupational therapist or physiotherapist during your admission. They are healthcare professionals concerned with enabling you to be as independent as possible with every day activities These activities can include: walking, balance exercises, managing stairs, managing tasks such as dressing, cooking, shopping, leisure activities and work. As well as giving you advice, the occupational therapist or physiotherapist may arrange for you to have equipment such as walking aids to assist your recovery. If you saw a therapist during your stay, they will have discussed with you any ongoing referrals or recommended treatment. The inpatient occupational therapy and physiotherapy teams can be contacted on 0151 529 5452/1. However, if you did not see a therapist during your inpatient stay, then you could discuss your concerns with your CNS or G.P who will be able to refer you to your local area teams.
Long Term Support
If you find you are having some lasting symptoms or worries following surgery the CNS team will be happy to see you in clinic to discuss this in detail. We call this consultation a holistic needs assessment (HNA for short). Many patients find this very useful as it provides time for you to talk about things that are impacting your overall recovery and is led by how you are feeling. This can be a good step forwards in your recovery process and can be done at any point following your operation. The CNS team routinely offer this type of appointment after you have had your final biopsy results. This does not depend on the type of tumour you have and is entirely voluntary. This can be a good opportunity to talk about how you are feeling and any symptoms you may be experiencing following surgery. This can be done face-to-face or via a telephone appointment. Please contact us if you would like more information about this.
Additional Treatment following surgery
In some cases following surgery it will be necessary to have additional treatment in the form of radiotherapy, chemotherapy or a combination of both.6 Your treatment options will be discussed with you. If this treatment is recommended you will be given an appointment with an Oncologist once all your results about the type of tumour you have are available. At the Walton Centre we work with oncologists from both Clatterbridge Cancer Centre and North Wales Cancer Treatment Centre allowing any necessary treatment to be given as close to your home as possible.
You can ask a member of your clinical team about current research and clinical trials.
Alternative approaches to management Patients often ask about alternative or additional treatments to help in their recovery.
As health care professionals we are unable to promote any treatment that is not fully supported by medical evidence but we understand you may want to look at all of these options. We are commonly asked about:
- The Ketogenic diet
You may have heard about the Ketogenic diet. This is a diet that encourages low carbs and increased fats and is being trialled by some specialist centres. Currently the Walton Centre does not have an open trial relating to this. However, more information can be found at ‘Matthews Friends’ (matthewsfriends.org) a charity with a dietician that specialises in ketogenic dietary therapies.
- Cannabis oil
The use of Cannabis oil is highly publicised and many patients want to know more about this option. At this time however we don’t have any supporting evidence for this treatment and cannabis based products have not been licensed for medical use for people with a brain tumour.
What we tell your GP
Your GP will be informed of your hospital stay and will receive:
- A Treatment Summary.
This will give details of your surgery, progress to date and follow up plans. It will be sent to your GP when you are discharged.
- A medications summary. This gives details of any medications that have been started or changed during your Hospital stay.
If you want to take some positive steps to improve your overall health simple lifestyle changes can make a big difference. Some things to consider could include:
If you’re a smoker now could be a time to think about quitting or reducing the amount you smoke. If you would like to find more information about local support services available in your area to help with this please call NHS Free Smoking helpline on 0800 0224 332 or visit https://www.nhs.uk/smokefree
Moderating your alcohol intake is important especially as some medications given following brain surgery can make you more sensitive to the effects of alcohol. If you want to find out more information about NHS guidelines and safe alcohol intake you can find out more at https://www.nhs.uk/live-well/alcohol-support/calculating-alcohol-units/
What we eat is important for general health and wellbeing. This is true both during your recovery and following surgery. If you would like to find out more about a balanced diet useful information is available at https://www.nhs.uk/live-well/eat-well/the-eatwell-guide/
Physical activity is good for you. Some people are used to taking regular exercise while others aren’t. During your recovery you may not be as active as usual. It's best to build up your exercise tolerance gradually balancing this with rest. If you would like more information about what level of exercise is best for you you can speak to your specialist nurse or GP for advice.
Other contacts you may need:
If you have any questions or need to change your:
First appointment - please ring the PACS team on 0151 556 2313
Follow-up appointments - please ring your Consultant’s secretary. If you know the number you can ring them directly or via the main switchboard on 0151 529 3611
If you have questions or need to change your:
MRI scan - please ring 0151 529 8326
CT scan - please ring 0151 556 3679
Where can I turn to for help and support?
Clinical Nurse Specialist team
Walton Centre Telephone direct line: 0151 529 5648
Or Bleep via switchboard 0151 525 3611 bleep 5370/5391
Patient Experience Team
The Walton Centre Foundation Trust
Lower Lane Liverpool L9 7L J
0151 556 3090
Clinical Nurse Specialist (CNS) Clatterbridge Cancer Centre
0151 334 1155 ask for Helen Parton or Lisa Mak Watkins
Clinical Nurse Specialist (CNS) North Wales Cancer Centre
01745 445259 ask for Pauline Burford
Your GP and Practice Nurse Local District Nurses (you can get their direct number from your GP)
Community Macmillan nurses (your GP or District Nurse team can usually provide contact numbers for your local Macmillan nurse)
Macmillan can offer practical help and guidance in many areas including finance, benefits, help with household issues and have a support group. They also have information booklets on a wide range of subjects. There is a Macmillan information centre in Aintree Hospital adjacent to Walton Centre. Macmillan also offers a variety of local access points in the local community. Telephone 0808 808 0000
The Teenage and Young Adult (TYA) Cancer Service
The Clatterbridge Cancer Centre
They support people aged 16-24 who have a cancer diagnosis Support includes coping mechanisms, financial issues, educational/employment needs and social opportunities
Telephone 0151 556 5122 (main office) Or 0151 252 5199 (Alder Hey Children’s Hospital)
Coping Better Together Course
This is a course for patients and families affected by brain tumours run by a CNS from the Walton Centre. It provides useful information and an opportunity to speak to other people with similar experiences. You will be contacted by post with an information pack about this when the course is next available. It is usually run once or twice a year.
Liverpool Brain Tumour Support Group
This is a support group run by people whose lives have been affected by a brain tumour diagnosis and is available to both patients and those close to them. The group meets on the last Monday in the month 1-3pm at The Brain Charity, Norton Street Liverpool. Contact Steve on 01606 45357
Northwich support group
Everyone is welcome to join the Northwich support group, run at Northwich Carers. The group takes place on the first Monday of the month from 1pm to 3pm.
Northwich Carers Centre
For more information contact Steven Sharman on 01606 45357
The Brain Charity
Here emotional support, practical help and social activities are offered to anyone with a neurological condition. Support includes counselling, welfare benefits, adult learning courses, carer’s advocacy and a legal service
Telephone 0151 298 2999
The Brain Tumour Charity
They provide support and information and are involved in research and clinical trials. They have a wide range of information leaflets. They have a variety of resources including books, animations and blogs Telephone 01252 749 990 or 0808 800 0004 http://www.braintumourcharity.org
This charity focuses on support and wellbeing. They look at living well with a brain tumour, including providing practical help, money matters, travel advice. They have patient guides including understanding the brain tumour care pathway Telephone 01983 292405
- Last Updated:01 October 2018
- Review Date:01 October 2022
- Author:Alison Rodway and Collette Crompton
This leaflet provides information and answers to questions often posed by patients following brain tumour surgery.