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Don't suffer pancreatic cancer symptoms in silence

Posted by: Lynne and Emma 23 April 2020

Hello, we are Lynne and Emma, specialist pancreatic cancer nurses. In this worrying and uncertain time we know that you may still be dealing with symptoms of pancreatic cancer and side effects from treatment. In this blog we talk about some of the commonest symptoms and how you can get support with them.

While we are all being asked to avoid going to hospital to help to reduce the risk of spreading the coronavirus and to protect our NHS, it is so important that any symptoms and side effects are taken care of as well as keeping safe during this time. You might be worried about making contact with your hospital team, GP or your community nurse; you might feel that you are bothering people, or that they are busy with other things. Please don’t sit at home worrying - make sure you ask for help, support or advice if you need it. Tackling symptoms and side effects as they arise minimises the impact they can have on you and reduces the potential of having to go into hospital for help.

Getting Advice Over the Phone

It might be that rather than seeing your doctor or nurse in person, they will be giving advice over the phone at the moment. Here are some tips from getting the most from these conversations.

  • Write down the questions you have.
  • Write a list of your medications and have it by the phone.
  • What are your symptoms and how long have you had them?
  • Have you taken anything already to treat the issue? Has this worked?
  • It might be useful, if you can, to have someone else in your household listen to the call – like you might have done when going to a hospital appointment, or GP visit.
  • Have a notebook and pen with you to write down any key information. 

Some of the commonest symptoms when you have pancreatic cancer are fatigue, anxiety, diet problems and diabetes.

Fatigue

Fatigue is when you feel very very tired, it isn’t the same as just feeling tired. It can be draining, and you may still feel tired, even after resting or sleeping. Fatigue may be caused by the pancreatic cancer, be a result of symptoms, or be a side effect of treatment. It might be something that you’ve been struggling with for a while or it might be a new symptom you are dealing with. Current events may also leave you feeling more fatigued than usual, as stress can have an impact on fatigue. If you are someone that is shielding, your daily activity may be different to normal and this can also impact on fatigue. If you have fatigue, you should talk with your hospital team as they will want to review what is causing this and how best to manage it. There are some things you can do yourself to help manage your fatigue.

  • Try and establish a daily routine; getting up and going to bed at similar times can help with this.
  • Regular gentle exercise can help by maintaining muscle strength and can make you feel like you have more energy. This can be difficult at the moment especially if you can’t go outside, but there are still some things you could try. Have a look at our information about physical activity, or on the NHS website. There are also online fitness classes – just make sure you choose one that’s right for your level of fitness.
  • Save your energy – don’t do so much on one day that you’re exhausted for the next day.
  • Limit phone calls, FaceTime & video calling if you find them tiring. For example, you could agree to keep chats to 15 minutes.
  • Plan ahead so that you have time in your day to do the things you want to – be realistic about how much you can do.
  • Accept offers of help with everyday tasks like shopping. Read our tips for more suggestions for getting food and supplies at the moment.
  • If you’re having problems eating, our diet tips may help you get the nutrients you need. Eating well can help reduce fatigue.

We have a new booklet, Fatigue and pancreatic cancer – How to deal with tiredness, which has lots more information about how to deal with fatigue, and practical tips that can help.

Anxiety

Everyone reacts differently when they are told they have pancreatic cancer, and as time goes by you may feel a range of emotions. You might feel shocked, numb, frightened or anxious and these feelings are normal. If you are currently also being asked to practice social distancing, self-isolation or shielding due to coronavirus you may also feel anxious and panicked about this; this too is normal and I think most of us are feeling worried at the moment.

We have information about looking after your mental health at the moment, and there are things you can do to try and help yourself while you are at home.

  • Try and establish a daily routine. This can help you feel more in control, and gives some structure to your day.
  • Regular gentle exercise can help with fatigue, but can also generate those feelings of wellbeing, which can lift your mood too.
  • Set yourself goals for each day to do something you enjoy.
  • Keep in touch with family and friends, this will help you to stay connected while staying at home. You could try video calling through WhatsApp’s, zoom or FaceTime.
  • If you are experiencing any symptoms get advice about managing these as soon as possible.
  • If you can go outside; the outdoors is known to help improve low mood and anxiety. You must remember social distancing practices, and keep 2m distance to other people.
  • If you are shielding, it’s fine to go out into your garden or balcony, if you have one. If you don’t have outside space, try sitting by an open window to get some fresh air.
  • Try to challenge negative thoughts like ‘I should be able to do more’ or ‘they think I’m lazy’. Focus on what you can do rather than on what you can’t.
  • There is a lot of information being shared in the news and on social media about coronavirus. This can at times be overwhelming, so try to avoid reading too much of this to help reduce stress.

Diet problems

Having pancreatic cancer can cause problems with your diet, and can affect what you eat and your digestion. The pancreas produces enzymes to help break down food so all the nutrients are absorbed into your body. Pancreatic cancer can reduce the amount of these enzymes and cause problems with digestion. You might have symptoms such as appetite and weight loss, indigestion, tummy pain, bloating and runny poo (diarrhoea). Read more about these and other diet symptoms.

Pancreatic enzyme replacement therapy (PERT) is a capsule you take orally that helps to replaces the enzymes your pancreas would normally make, they help you to digest your food and absorb all the calories and nutrients. Taking PERT can help manage dietary symptoms and make a big difference to how you feel; most people with pancreatic cancer will benefit from taking PERT.

If you are experiencing any symptoms related to diet or require advice about PERT please don’t sit at home worrying. If you have a dietitian involved in your care give them a call and your medical team or GP will also be able to give you advice and support.

Diabetes          

The pancreas also produces hormones such as insulin which control blood sugar levels in the body. Pancreatic cancer can reduce the amount of hormones, which can cause diabetes. Pancreatic cancer can make managing diabetes difficult. You should be in touch with your diabetic nurse for advice about monitoring your blood sugars and managing your medication. If you do not have a diabetic nurse please contact your dietitian, hospital team or GP for advice and support.

Symptoms of diabetes include:

  • feeling thirsty
  • wanting to urinate frequently (more so at night)
  • tiredness
  • weight loss
  • blurred vision

If you have these please get in touch with your medical team or GP for advice and support.  

If you have diabetes you are being asked to adopt social distancing practices. Although everyone in the country is being asked to do this, it’s particularly important for you as you may be at more risk of getting ill from coronavirus. If you have diabetes and you have symptoms of coronavirus, such as a raised temperature and/or persistent cough, you should continue taking your medication and use the NHS online service for more advice. Diabetes UK have information about diabetes and coronavirus.

Other Symptoms

There are of course other symptoms you might be faced with. For advice on managing all symptoms contact your hospital team, GP or your community nurse. Our website has information on managing side effects and symptoms.

You can also get advice and support in managing all symptoms or side effects, as well as any issues around coronavirus from our support line nurses. You can get in touch by email at nurse@pancreaticcancer.org.uk or pick up the phone and call them on 0808 801 0707.

Thanks for reading our blog, we hope you’ve found it useful; we know things are tough at the moment but stay safe.

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Lynne & Emma