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Welcome to the end of your treatment and well done for making it this far. We know you will have lots of questions, anxieties, and fears by coming to the end of treatment so we hope this leaflet will help to guide you through what to expect when you finish treatment here at Derriford Hospital.

This is a document given to you at the end of treatment, it details what treatment your child had, and what their follow up is going to be.

Children will need to have different types of follow up depending not only on what cancer they had, treatment they received, the stage of their cancer and any complications. Therefore, some children will need to be seen more frequently than others.

We increase the space of follow up visits to hospital over time, but rest assured we will always be available for advice and support. Eventually when a patient reaches 5 year event free survival post treatment, we would see them typically once a year on a Wednesday afternoon.

This is dependent on your child’s diagnosis so frequency will be varied for each child. Follow up scans will be discussed and should be outlined in your end of treatment summary.

Some medication such as Co-Trimoxazole (Septrin) will continue for 3 -6 months post end of chemotherapy. Any medicines not used will need to be returned for safe disposal at the hospital.

Whilst children have a Hickman line/ PICC line in place, these will need to be flushed weekly. A TIVAD (port) will be flushed monthly until they are removed. 

A referral will be done for removal of the central line or TIVAD to take place at either Bristol Children’s Hospital or Derriford depending on surgical availability. For most children blood tests will not need to be done once their blood counts have recovered from their last treatment.  For others, the blood tests will be done when they come to clinic.

Once your child is 6 months off treatment, we would expect their immune systems to be returning to normal. Open access to the ward will still be available for 3 months after treatment (unless stated otherwise as this can depend on diagnosis and treatment). After this time your GP practice will be your first point of call.  You can obviously contact the oncology team/secretary for oncology advice.

When your child/young person turns 18 their care will be transitioned to adult services. Depending on diagnosis this will either be with the adult services here in Plymouth or with Bristol aftercare service.

During chemotherapy your child’s immune system may have forgotten how to fight certain infections they would have been immunised against. At 6 months they will need to be re-immunised. We will write to your GP to give them the latest guidelines for re-immunisations from the CCLG. You will need to book in a time with your GP for this to be done. If your child did not complete the course of childhood vaccinations prior to starting treatment, then this should be completed.

In your first winter off treatment, we would recommend a flu vaccination. Currently the guidance is for this to be a non –live vaccine. Bone Marrow Transplant patients are recommended to have a flu vaccine yearly.

Here is an example of the immunisations that would be given post treatment, please note this can change as guidance changes, and BMT patients may have more immunisations. Six months after completion of standard dose chemotherapy a booster dose of vaccinations should be given. 

All children will be offered to ring the end of treatment bell at completion of their chemotherapy / treatment. Some children wait until they have had their lines removed to do this, others like to do it as soon as possible after their last treatment or after end of treatment scans have been done.

We use the charity end of treatment bells who have helped thousands of patients celebrate milestones during and after their treatment. Take a look at their website www.endoftreamentbells.com to find more out about the charity and also how you can support the charity by sponsoring a bell. They are also on Facebook and Instagram.

You can bring family members and friends to ring the bell to celebrate the occasion, we will organise a date and book an appropriate time slot. Children/ Young people will get a certificate as well to say they have completed their treatment and rang the bell.

Support and Resources

We understand that end of treatment for some brings a lot of anxiety, at times more than when they are on treatment and for others it is the way forward to forget the painful treatment that have been through. Home visits are offered whilst lines are in place and Tanya and Carly will then be available at the follow up clinics with other team members to discuss any concerns. Katy Farrell Wright our psychologist is also around to help with this transition.

There are widely available resources to help with the end of treatment worries and give you some guidance on what happens next.

www.cclg.org.co.uk

www.teenagecancertrust.org

www.aftercure.org

www.younglivesvscancer.org.uk 

Teens Unite is a great charity who offer support to 13-14 year olds by providing opportunities to meet others who have been through treatment or through their online learning groups. It is great for young people during treatment but also post treatment. So even if you were diagnosed before 13 you can still register with them for support when you reach 13. www.teensunite.org

Young Lives vs Cancer is available to support families in the months post treatment as well. The website has a useful information hub about all stages of treatment including the end of treatment and there are online community groups you can join too. You can get in contact with the charity by visiting their website, using the live chat function or contacting a member of the team at:

GetSupport@younglivesvscancer.org.uk

The DWP states that you must notify them of a change in your circumstances, this applies when you come towards the end of treatment too. For many patients who have had chemotherapy, they will likely to still be experiencing some side effects (fatigue etc) and still have regular appointments for about 6 months post the last dose of chemotherapy. Many families will start to see an improvement around this point so will usually inform the DWP that they no longer need DLA around the 6months mark. If your child recovers sooner, then we advise to notify the DWP. Please speak to your Young Lives vs Cancer social worker or outreach nurse if you are unsure. 

Wishes

Most children who have been through treatment will be eligible for one 'wish' or 'special day'. This is a treat that you usually apply for around the end of treatment so your child can get the most enjoyment out of it. There are several different wish organisations, so please speak to your Young Lives vs Cancer social worker and they will be able to refer you. The organisations that we commonly refer to are either Rays of Sunshine, Make A Wish and Dreams Come True. Other organisations also offer wishes. 

Ellen Macarthur Cancer Trust –

The EMCT provide sailing trips for young people between the ages of 8 to 25 following a cancer diagnosis. The aim of the trips is to build confidence and self-esteem whilst having fun sailing yachts around the Isle of Wight. You can find out more and sign up for a trip here: www.ellenmacarthurcancertrust.org