Starting your SACT treatment and support available

On the day of treatment

Please follow the information listed below before attending for your treatment:

• Take your usual medications as normal, unless you have been advised not to. Bring any medications, such as pain relief, that you will be due to take during your treatment.
• You can eat and drink normally before your treatment. If you are required to drink extra fluids, you will be informed of this.
• Try to keep warm and well-hydrated before and during your treatment.
• If you are an oncology patient and you are having scalp cooling, remember to bring in what you need for this such as a conditioner and a wide-toothed comb.
• While you are having your treatment, you must tell a nurse immediately if you feel:
  • Unwell in any way. For example, a sudden shortness of breath, your heart starts racing, you feel hot and clammy, shaking or shivering, your throat/lips swelling or you notice a rash anywhere on your skin. These are signs of a reaction. A reaction is an emergency that must be treated immediately.
  • Pain, stinging, swelling, and burning where the cannula goes into your hand/arm or in your chest if you have a PICC, central line or port in place. These are signs of an extravasation. An extravasation is an emergency that should be treated immediately.
  • Difficulty swallowing, breathing or talking or a spasm in your throat.

These are the signs of a laryngospasm, which can be treated.

Laryngospasm is a known side effect of a particular chemotherapy drug called Oxaliplatin. To avoid this, keep your neck and throat warm, wear a scarf or blanket and have regular warm drinks during your treatment.

Ongoing assessments throughout your treatment

Before your next cycle of treatment, you will be assessed either by telephone or in the clinic.

Please note that it may be a different member of the team that contacts you each time. This can include a consultant, specialist registrar, specialty doctor, nurse practitioner or CNS.

The assessment includes:

• Reviewing your latest blood results
• Reviewing the results of any other investigations you may have had
• Assessing any side effects or symptoms you may be experiencing from the treatment or the cancer itself
• Discussing any other health concerns and how you are coping with the treatment

It can be beneficial to keep a note of any side effects you experience in between your treatments and raise these at your assessments.

Following the assessment, your treatment will be authorised to continue, or it may need to be altered or postponed. The reasons for this will be discussed with you at the time.

If your treatment is authorised to continue, your next appointment will be made.

The date and time of your treatment appointments will be confirmed one by one. If the intended date for your treatment falls around a bank holiday, it may be a couple of days sooner or later than expected.

Please note that an assessment is not always required, for example: If your treatment is for injections only it may be able to be authorised in advance. You may only require a blood test in between treatments. Make sure that you know what the treatment plan is for you.

Support during your course of treatment

Cancer Nurse Specialists (CNS)

You may have access to a named CNS as a point of contact during your treatment or the support of the whole team.

A CNS is a nurse who has had additional training, with an in-depth knowledge of your cancer and the treatment that has been recommended to you.

The roles of a CNS are to:

• Act as a point of contact
• Be a source of information, advice and support
• Point you in the direction of other help or support you may need
• Co-ordinate care between various teams in the hospital and keep your GP informed
• Make sure your wishes are met
• Talk through the information you are given to help you to understand
• Give you advice about lifestyle and diet changes that may help

Cancer Support Workers (CSW)

Cancer support workers play an important role in helping you to find your way through your treatment and work alongside your cancer CNS. They do this by listening to your concerns and then providing relevant and accessible information and support, not only for you, but your family and friends too if you wish.

Their role includes:

• Offering you a Holistic Needs Assessment (HNA) to help you and your team identify what is important to you
• Signposting you to local and national well-being centres and support groups
• Completing referrals to other relevant healthcare professionals and local authority departments, if appropriate
• Helping you to access high-quality and reliable information
• Signposting you to other sources of support, such as complementary therapies, financial, practical and emotional support both locally and nationally, and to help empower you to access support.

Holistic Needs Assessment (HNA)

The HNA is a very valuable tool that can help identify your concerns and enable your team to know what is important to you. It is called a holistic assessment because it focuses on your life as a whole. This includes your physical, practical, emotional, financial, spiritual and social needs during your cancer treatment.

Following your HNA, your CSW or CNS may contact you to arrange a further appointment. You will be able to discuss in more detail any concerns you highlighted in your HNA and ask any questions you may have.

Your CSW or CNS will then create a personalised care and support plan for you, based on your discussion, containing relevant information, support and signposting. This plan will be sent to you and a copy kept in your hospital records for all other healthcare professionals involved in your care to refer to. A copy can also be sent to your GP if you would wish.

FOCUS Support and Information Centre

An appointment will be arranged for you to meet the FOCUS team before starting your treatment.

Haematology patients – you can drop into the Centre, call them, or your CNS can help you to arrange an appointment with the team.

The FOCUS team can provide you with a pack of essential information and support with many things. This includes:

• Giving you a ‘Your Cancer Treatment Record’ book by Cancer Research UK. This book can help you monitor and record any side effects you may experience and guide you when to call AHOU for advice.
• Giving you the AHOU contact information
• Giving you an Action card
• An application for Medical prescription charge exemptions (you can get a copy of this form from your GP).
• Support with hair loss/thinning. FOCUS can book referrals to NHS-approved wig suppliers and issue wig prescriptions. Wig clinics are held fortnightly, on a Wednesday, in the Centre, and hourly appointments are available.
• If you have financial concerns, the Citizens Advice Bureau caseworkers offer pre-booked appointments in FOCUS every Monday to Friday from 9:00am to 1:00pm. They can support you with up-to-date benefits information such as PIP, Attendance Allowance, Carers Allowance and Universal Credit, blue badge applications, grants, debt recovery and rights in the workplace.
• Any additional information appropriate for you and your plan of treatment. For example, scalp cooling, benefits advice, carers support and talking to children.

You can find out more about Focus below