Back in June’s newsletter, we asked you to send in your summer-related questions for our “Ask a Nurse” feature, and you didn’t disappoint! Thank you to everyone who took the time to submit something; we had a brilliant range of questions covering everything from sun safety to travel and treatment schedules.
I’ve collated your questions and passed them to our nurses here on the forum, they’ve kindly taken the time to answer each one below. We hope you find these answers useful, and please don’t hesitate to reach out if you have a question of your own - you can post it below.
A quick note: as always, their answers here are for general guidance. If you have concerns specific to your own diagnosis or treatment, please do speak to your own clinical team.
Right, on to your questions!
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Question:
“I love the sun! What’s the best way to make the most of its benefits while staying safe?”
Nurse Heidi’s answer:
Depending on your skin tone, you can top up your vitamin D level from just being out during the day for 8-10 mins, but avoiding when the sun is hottest. The more melanin in your skin, the longer it takes to produce vitamin D from sunlight, so those with lighter skin need less exposure. In summer, more of our body tends to be uncovered (legs, arms, neck), making it easier for UV light to be absorbed.
We would advise against sitting out in the full sun or ‘sunbathing’, but do take a look at our website pages on sun safety there is some great information, and handy ideas for staying safe.
Also remember to check whether any medications you take are photosensitive, as some medicines used in blood cancers can cause itching or even blistering, for example Hydroxycarbomide, some antibiotics and heart medications. You can ask your GP, Pharmacist or Haematologist about any medicines you take, if you are concerned.
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Question:
“I’m on chelation tablets for iron overload and I’m having stomach issues. Would I be wrong to want to stop?”
Nurse Heidi-J’s answer:
I’m sorry to hear you’re having stomach issues with your chelation medication. You are not wrong for wanting to stop something that’s making you feel unwell. However, we’d strongly encourage you to talk this through again with your consultant, and ask about the possibility of swapping to a different chelation medication to see if this helps.
You don’t need to wait until your next appointment, you can contact your specialist nurse and let them know you’re struggling with side effects. If it would help to talk it through with one of our support nurses first, please do call, it’s free and confidential 08082080 888. We’d be happy to talk through any thoughts or questions before your discussion with your consultant.
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Question:
“Why am I tired all the time, even though my GP hasn’t found anything?”
Nurse Heidi’s answer:
Fatigue and exhaustion are complex and very common symptoms of a blood cancer diagnosis and/or its treatment, complex enough that some healthcare specialists deal solely with this symptom. It can also, of course, be made worse by the heat of summer.
Aside from the heat, a few other contributing factors are worth considering; diet and nutrition, a dietician referral could help. Psychological or emotional wellbeing, which is often overlooked as a factor, again a referral to a clinical psychological can be very helpful. Certain medications can cause tiredness; your GP, a pharmacist or Haematology team can help rule these out. Another key factor is sleep, which sounds obvious, but it’s important to monitor sleep patterns and discuss these. Some people find they nap during the day, but napping too long or too often can actually make fatigue worse. You could also ask your GP about a referral to an occupational therapist or physiotherapist who specialises in fatigue, or ask if there’s a local fatigue clinic, they will ask you about your sleep patterns.
We have some information on Fatigue on our website that you may find helpful. Our support nurses are always happy to talk this through further if you’d like to call us. The number is free and confidential: 0808 2080 888.
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Question:
“Where can I find affordable travel insurance while on watch and wait?”
Nurse Heidi’s answer:
Thank you for this question. We’d suggest looking at the list which was put together by Maggie’s Cancer Centres Travel Insurance, as different providers may offer different policies depending on diagnosis and treatment.
One thing to watch for is some insurers use the term “terminal cancer” to mean “no cure,” but terminal cancer specifically means a prognosis of under 12 months. Many blood cancers aren’t curable but are not terminal, so do clarify your diagnosis and prognosis with the company. Some companies also list certain blood cancers under bone cancer categories. If you’re ever unsure, our support nurses are happy to talk it through with you if you’d find it helpful. Just call 0808 2080 888, it’s a free and confidential line.
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Question:
“Why does the heat affect me more now with Chronic lymphocytic leukaemia ('CLL'), and what precautions should I take?”
Nurse Heidi’s answer:
I’m sorry to read that the heat is affecting you, it may or may not be your Chronic lymphocytic leukaemia ('CLL') causing this. There could be several reasons that cause someone to feel unwell or more tired than others during hot weather. Do make sure to speak with your Haematology team if you are finding things hard going.
Some medications can impair our bodies natural cooling mechanisms, for example blocking sweat production, increasing metabolism and restricting blood flow. Do ask your doctor or a pharmacist if any of your Chronic lymphocytic leukaemia ('CLL') medication could be contributing to feeling affected by the heat. There are many other common medications in use where patients need to take extra care in hot weather, for example blood pressure medication, some anti-platelet medications, and anti-virals. Speak to a pharmacist or your doctor if you want to find out more and rule this out as a factor.
Also, when we age, our ability to regulate our body’s temperature decreases; our sweat glands don’t work quite as well and our blood vessels are slower to react, making it harder for the body to cool down. We also loose our ability to recognise thirst, so many people can easily become dehydrated from not drinking enough, because they don’t feel thirsty.
We would suggest pacing yourself, don’t try to do too much, even on days when you feel most energetic. Make sure to stay hydrated, drink plenty of fluids, in addition to what you would normally drink. Eat well too, make sure you are getting all of the right nutrients. If you feel like you are ‘over heating’, use fans, and other cooling measures as well as light weight clothing.
Try to avoid exerting yourself during the hottest parts of the day too, this can drain energy levels quickly.
There are some good tips for keeping safe and cool this summer on our webpage: Keeping Safe in Hot Weather.
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We also had a couple of more general questions submitted, and rather than missing those out we will still share them here, as they might be useful to others:
Question:
“Is it common for Monoclonal gammopathy of unknown significance ('MGUS') to cause tiredness or breathlessness, and what should I ask at my upcoming Monoclonal gammopathy of unknown significance ('MGUS') nurse appointment?”
Nurse Fiona’s answer:
Monoclonal gammopathy of unknown significance ('MGUS') does not normally cause any symptoms, so I would recommend discussing them with your nurse at your upcoming appointment, especially if they are new or worsening.
Question:
“I’m 6 months post-treatment for Acute promyelocytic leukaemia ('APL') with nothing to manage now beyond routine tests. Where can I go for support with staying healthy and managing anxiety about recurrence?”
Nurse Emma’s answer:
Some Hospitals or local cancer centres have post-treatment follow ups or short courses for managing health and emotional wellbeing. You could ask your specialist nurse if there is anything local they can recommend for you. Do you have a Maggie’s Cancer Centre near to you? They offer psychological support and information on exercise and nutrition:Maggies Centres
You would also be very welcome to call our support line and speak to one of our nurses too.
Question:
“Should I be concerned about having contrast for my upcoming CT scan?”
Nurse Heidi-J’s answer:
Do call the imaging department where you are having your scan with contrast if you have any worries or concerns. They will be able to reassure you about the whole procedure, and be able to give you more individual advice prior to your appointment.
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