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Providing support to anyone affected by blood cancer
It’s all in the planning
As a nurse, you are such a rich source of valuable comfort and support for your patients. Many nurses ask me at what point would patients benefit most from hair loss guidance? My answer is as soon as the patient is diagnosed. Even if their treatment path means that hair loss will not be a side effect of their treatment I guarantee most women will have assumed it will be.
Women in particular benefit from being handed a booklet or simple document that will give them further reading and understanding as soon as they are diagnosed. Whilst most cancer units will eagerly provide their patients with hair loss information at their pre-chemo chat/consultation it’s often too late in terms of actually reducing anxiety. Most women will have been busy sourcing their own information that can be misleading and heighten their sense of fear around treatment.
We can help patients by offering them the most likely prospective about the side effects, for example, it’s likely that your treatment regime will mean that you will lose your hair – here is some information so that you can get organised with your thoughts. We will offer you more support once your treatment plan is in place.
Additionally, if you are a lead nurse it’s well worth checking that your team haven’t become desensitised about hair loss. It’s easy to lose the individual perspective when as professionals we have become used to seeing people without hair. For most female patients it is the first time they will have seen themselves without hair. It can trigger huge shame and self-confidence issues. Making sure that your team treat the subject with sensitivity is essential.
• When it comes to chemotherapy it’s helpful to let men know that hair loss is likely everywhere on the body including facial and scalp hair. Many men say that they were shocked when their eyebrows fell out as they had thought hair loss was only on the scalp.
• Whilst it is rare for men to have deep concerns around hair loss for those men who are worried anxiety can be reduced by signposting. Men who have suffered image anxiety have told us that they didn’t know about any services for men. My charity Cancer Hair Care has a helpline. Men can feel free to call in confidence to discuss their concerns and options. All NHS wig suppliers are also duty bound to provide services to men.
• The most common tip we give out to men who are worried that hair loss will take away their privacy is suggesting that they have a sponsored head shave. They can pick a charity, shave off their scalp hair and eyebrows if they dare, raise some money for charity and when anyone asks about hair loss they can refer back to their fundraising. – This simple idea has helped many men who want to keep their diagnosis private, especially in the work environment.
• If you would like me to write an advice sheet for men – let me know!
Scalp Cooling – Let patients know that it’s not suitable
Scalp cooling is becoming more widely available. It’s really important to let patients know that it’s not suitable for people with the following conditions: haematological malignancies (leukaemia, non-Hodgkins and other generalised lymphomas). By letting the patient know in advance helps to reduce the frustration that patients can experience when they are told that they can’t have this type of hair loss reduction method.
Here are my top 5 sources of support
1. Provide your patients with a clear document about your hospitals NHS wig supplier: who, where and when appointments can be made. For example, most patients need to wait until their referral letter is sent from the hospital
2. Cancer Hair Care offer publications with guidance for adults and children (parents) about hair loss and ideas for covering up as well as new hair growth. You can ask for booklets to be sent to your hospital. Contact email@example.com
3. Look Good Feel Better is a charity service offering free makeovers and workshops throughout the country to help women deal with changes in appearance http://www.lookgoodfeelbetter.co.uk
4. Medical staff, parents and guardians of children and young people can call our Cancer Hair Care team for a pack of free headwear, dollies and age appropriate items to help with hair loss – call 01438 311322
5. You! As a cancer professional you will have lots of helpful tips and ideas to how help your patients manage. Perhaps arrange a coffee morning to share some insights and ask local providers to come along and share ideas and products. For example, you may have seen a fake fringe that can cleverly tuck inside a headscarf to create a look of hair, but most patients will have never seen one.