A Patients Journey.
We're here to offer you our experience, help, friendship and to support you.
If you are reading this, then either you or a close member of your family has recently been diagnosed with cancer in the Head and Neck region.
This is obviously devastating news to you all and you have been bombarded with information regarding treatment.
The first thing to say is do not despair. Everyone is working on your behalf to sort the problem out. What you are just about to begin is a journey, where we want to help you get through the treatment so that you can return to your way of life.
This series of video clips outlines each step in the pathway.
It will finish with a list of phone numbers of people who you may want to contact if there are problems.
The Clinic Reception
This is the first exposure you will have to the hospital. You will have been referred in by your Doctor or dentist and you present yourself to the reception desk where our staff will welcome you and ask you to sit in the waiting room.
Meeting The Consultant
During your first visit, you will meet the Consultant who either take the history and examine you him/ herself or your case will be presented by a junior member of staff.
Radiology
The most important examinations are the CT scan; MRI scan and Ultrasound. These four videos outline what is involved in having the scans and then gives an idea into what we are looking for:
Radiology Ultrasound
This is sometimes called the “jelly scan” and it is exactly the same one which is used when reviewing the development of babies prior to birth. A probe with the jelly is applied painlessly to the neck in order to review the tissues. This video will outline the technique and what we are looking for.
Radiology CT
These scans involve lying down on a bed and being placed into a scanner so that the precise x ray images can be taken. The CT scan is usually very quick. The MRI takes longer; is noisy and a bit claustrophobic. The videos, I hope will outline what you will go through and why once you have had these tests and it is confirmed that you have a cancer then you will be seen again by the consultant and at this consultation you will be seen by the Clinical nurse specialist.
Radiology MRI
These scans involve lying down on a bed and being placed into a scanner so that the precise x ray images can be taken. The CT scan is usually very quick. The MRI takes longer; is noisy and a bit claustrophobic. The videos, I hope will outline what you will go through and why once you have had these tests and it is confirmed that you have a cancer then you will be seen again by the consultant and at this consultation you will be seen by the Clinical nurse specialist.
Radiology CT
These scans involve lying down on a bed and being placed into a scanner so that the precise x ray images can be taken. The CT scan is usually very quick. The MRI takes longer; is noisy and a bit claustrophobic. The videos, I hope will outline what you will go through and why once you have had these tests and it is confirmed that you have a cancer then you will be seen again by the consultant and at this consultation you will be seen by the Clinical nurse specialist.
Clinical Nurse Specialist
This is the link to all your treatment pathway. Any problems, then please get in touch as she will sort it out if she can or find someone who will. Remember it is no shame to ask for help.
Outpatient Pharmacy
Once you have had your consultation, you may be prescribed antibiotics, pain killers or mouth washes. You will be given a prescription and take it to the outpatient pharmacy.
Head and Neck Clinic – reception
You will have been given an appointment to attend the Head and Neck clinic. This is located in the main outpatients department in UHW , clinic 9.
Head and Neck Clinic – Senior Nurse
The diagnosis has been made but you’re still in the dark re what’s to be done! You will be informed that you will have to attend the Multidisciplinary clinic. At this clinic, the teams involved in your care will be represented and come and meet you.
Multidisciplinary Meeting
Once you have been seen by all the members of the multidisciplinary team, everyone goes off to a meeting room and discusses each individual case, so that you will have a treatment plan dedicated to your needs.
Head and Neck clinic - Consultant
When you return, you will be met by the consultant and usually the clinical nurse specialist. They will outline the treatment plan proposed and answer any questions you have.
Ward Sister
Either as part of your investigations where the team may want to have a look at you whilst you’re asleep – termed panendoscopy or to put in a feeding tube – PEG which stands for percutaneous gastrostomy tube or as part of your admission for treatment, you will be admitted to the Head and Neck ward which in the UHW is ward A5.
Ward housekeeper
These individuals are invaluable to the running of the ward. They make sure that the ward is kept clean and tidy as you would expect in your home. They have a difficult job but always try to be sensitive to the patients needs.
Dietician
Dietetic input is essential. Our team will review you, the first time you visit the Head and Neck clinic so that we get a baseline guide. Your height and weight will be recorded, and your minimal nutritional requirements noted.
Speech and Language Therapist
In the same way that Head and Neck cancer can effect your weight, it can also effect your speech and swallowing. Therefore, at the first visit to the multidisciplinary clinic , you will be assessed.
Nutrition nurse
Sometimes, you will require specialist dietetic help to aid in feeding. This is usually when you require a percutaneous gastrostomy tube – PEG. This team assess and then implement the insertion of this tube.
Ward Pharmacy
Either as part of your investigations where the team may want to have a look at you whilst you’re asleep – termed panendoscopy or to put in a feeding tube – PEG which stands for percutaneous gastrostomy tube or as part of your admission for treatment, you will be admitted to the Head and Neck ward which in the UHW is ward A5.
Surgery – Anaesthetist
If the planned treatment involves surgery, then on the night before your surgery, the anaesthetist will come to see you, examine you and explain what will happen when you go to the anaesthetic room especially concerning the events when you are being "put to sleep"
Surgery – Theatre Staff
When you are taken down to the theatre, you will be taken to the … area, where you will be met by a member of the theatre team and this is where you will go through a preoperative check list.
Intensive Care
It maybe decided that following your operation you will spend the initial postoperative period in the intensive care unit . You will be asleep here for one to one nursing care.
Wound nurse
Once you have been discharged from hospital, you will return to the clinic to have your wounds dressed. This is done by the wound nurse.
Restorative Dentistry
An important part of the journey is to ensure that your mouth and teeth are in the best condition possible. We have a team led by Liam Addy and supported by Penny Harrison who are there at the initial MDT to assess your needs and then work with you during this period. The video explains their role and what the journey will entail.
Velindre
This is where you will come if your primary treatment is radiotherapy or it is decided after the operation when the pathology is reviewed that you will require additional treatment. There are many Consultants specialising in managing Head and Neck Cancer. This will give you some idea of what to expect.
Radiotherapy preparation
When you have radiotherapy, you have to remain very still and this is where the radiotherapy mask comes into play. This section will go through how they prepare the mask.
Radiotherapy planning
Once the mask has been made, the planning has to be done with enormous accuracy then its time to commence on the treatment. This is effectively another CT scan which the Oncologist will use to accurately map out where you are to have your radiation.
Radiotherapy treatment
Once all the preparation is over, the mask made, planning done, then its down to coming for the treatment. This is obviously very strange and scary but please be reassured that all the staff are there for you.
Velindre Allied Health professionals
Whilst you are in Velindre you will be in contact with dieticians, speech and language therapists and clinical nurse specialists who will look after all your requirements- please speak to them about your concerns.
Head and neck clinic – nurses
Once your treatment is completed, you will be on longterm follow up by the surgical team, even if your primary treatment was radiotherapy. Usually this is an appointment every month for the first year.
Patients experience
To be told that you have cancer is world changing but you have to remain strong. Remember you are not alone. The team is there for you but importantly, there are patients like you who "have been there and got the tee shirt". We have a support group – Face up who are patients like you who have been through it and meet monthly for a chat; cup of tea – just a little socialising to emphasise that you’re not alone.
The following video’s provide detailed information on the management of eating and drinking during treatment. Not all methods discussed within these videos may apply to you. Please discuss with your dietician which methods are relevant to your personal treatment modality.