WEE ARE FAMILY. Whether you need someone to chat with or information on staying connected during this challenging time, we're here to support you.
We know that it is currently a worrying and uncertain time, but we are here to help you.
Where can I find support?
There are lots of different ways we can support you. Please see our getting support page for information about online support groups, Zoom groups and Bladder Buddies.
If you have any questions or concerns, you can visit our private online forum which is available 24 hours a day, 7 days a week. You can also email firstname.lastname@example.org or phone us on 01844 351621.
Latest NHS recommendations for people who have a weakened immune system (October 2022)
Immunosuppression means you have a weakened immune system due to a particular health condition or because you are on medication or treatment that is suppressing your immune system. People who are immunosuppressed, or have specific other medical conditions, may have a reduced ability to fight infections and other diseases, including COVID-19.
The NHS encourages people with a weakened immune system to get all doses of the COVID-19 vaccination. COVID-19 is still out there, and the vaccine offers the best defence against becoming seriously unwell, staying out of the hospital and passing on the virus to loved ones and others around you.
Individuals aged 12 and above with immunosuppression are eligible for a booster dose around 6 months (and at least 3 months) after their last vaccine dose. If you haven't already done so, you can book your vaccine online.
Please find the open letter from NHS, charity, and community leaders to people with a weakened immune system here.
Your questions answered
Here we address some of the most common questions from bladder cancer patients.
What is COVID-19?
COVID-19 is a virus that can affect your lungs and airways. It is a type of virus called coronavirus. The symptoms of coronavirus are a cough, a high temperature, shortness of breath. These symptoms do not necessarily mean you have the illness.
Transmission occurs primarily from coughs and sneezes within a range of about 6 feet (1.8 m).
COVID-19 vaccination programme
An effective vaccine is the best way to protect the most vulnerable from coronavirus. A huge step forward in our fight against coronavirus, potentially saving tens of thousands of lives. Vaccines have been approved by the medicines regulator, the MHRA and are available from the NHS – for free.
The Joint Committee on Vaccination and Immunisation (JCVI) are the independent experts who advise the Government on which vaccine/s the UK should use and provide advice on who should be offered the vaccination first. The Joint Committee on Vaccination and Immunisation is recommending that most people, including cancer patients, receive the COVID-19 vaccine.
People undergoing active systemic chemotherapy or treatment with pembrolizumab / atezolizumab / avelumab are likely to have a worse reaction to infection with Covid-19, compared to people undergoing BCG treatment. This is because anti-cancer drugs that are administered through an IV drip affect the whole body, while BCG generally affects only the bladder. This is why people receiving anti-cancer treatment through an IV drip are being vaccinated before people receiving BCG treatment.
Will I need booster jabs?
A booster dose of the coronavirus (COVID-19) vaccine helps improve the protection you have from your first 2 doses of the vaccine. It helps give you longer-term protection against getting seriously ill from COVID-19, and gives you additional protection against Omicron.
Most people will be offered a booster dose of the Pfizer/BioNTech vaccine or Moderna vaccine. This means your booster dose may be different from the vaccines you had for your 1st and 2nd doses. Some people may be offered a booster dose of the Oxford/AstraZeneca vaccine if they cannot have the Pfizer/BioNTech or Moderna vaccine.
If you are offered both the COVID-19 booster dose and the flu vaccine, it's safe to have them at the same time.
Our CEO Dr Lydia Makaroff answers some common questions about the vaccine.
COVID-19 vaccination questions and answers
Following extensive trials, safe and effective vaccines for COVID- 19 are now available to help protect you from the virus. Tens of millions of people in the UK have now had their first and second dose of the vaccines.
It is recommended that you have a vaccination when it is offered.
Many people with cancer and their family members are in a ‘priority group’ for vaccination. Your healthcare team will be in touch to invite you for a vaccine.
Here are some questions you have asked us about the vaccine, and some answers.
Can I still get the vaccine if I’m getting BCG treatment?
Yes, you can still get the vaccine, unless your medical team advises otherwise. Some doctors might decide to leave a gap of 1 or 2 weeks between the vaccination and BCG treatment. The vaccination should not interfere with the effect of BCG on the bladder.
Can I still get the vaccine if I’m getting on chemotherapy, immunotherapy or targeted therapy?
Yes, unless your medical team advises otherwise. Some doctors may suggest that you do not get your vaccine on the same day that you receive chemotherapy. Experts on cancer immunotherapy and chemotherapy have recommended that people on immunotherapy and chemotherapy should receive the Covid vaccine. If you have been recommended to start treatment that affects your immune system, such as chemotherapy or immunotherapy, then receiving a Covid vaccine before treatment starts may improve the effectiveness of the vaccine. But in some situations, people may need to start treatment before having the vaccine. It is possible that the vaccines may be slightly less effective for people having chemotherapy or immunotherapy. But it is still expected that the vaccine will give useful protection against the virus.
Should people who have already had Covid or are suffering from ‘Long Covid’ get vaccinated?
Yes. The scientists have looked at this and decided that getting vaccinated is just as important for those who have already had Covid-19 as it is for those who haven’t, including those who have mild residual symptoms. If you are suffering significant ongoing complications from Covid you should discuss whether or not to have a vaccine now with a doctor.
How long does the vaccine take to become effective?
For most people, a high level of protection should kick in around a week or two after the second dose. Even those who have received a vaccine still need to follow social distancing and other guidance.
Who cannot have the vaccine?
If you are allergic to any of the ingredients in the vaccine, you should first talk to your medical team.
Can I have the vaccine if I’m pregnant?
The experts have updated their guidance to say that pregnant women and those who are breastfeeding can have the vaccine but should discuss it with a doctor to ensure that the benefits outweigh any potential risks.
What should I do if I have cancer symptoms?
Cancer hasn’t stopped. Contact your GP if you have:
- Bleeding that doesn't come from an injury
- Weight loss / loss of appetite
- Pain / infection that won't go away
If you have cancer, you will get checked & treated. The NHS will give you the care you need.
Will my bladder cancer treatment be changed?
We know that everyone in the NHS is working unbelievably hard, and that many of you are now being called in for your previously postponed treatments and procedures. In the event however of any disruption, clinicians will always make decisions to prioritise treatment for those most in need and the focus will be to help those most at risk.
You might have questions like "How should I contact my urology team?", "What happens if I am self-isolating?", and "What happens if my appointment is cancelled?". The British Association of Urological Surgeons (BAUS) have published information for patients.
Many hospitals have been using telephone or video consultations as a way of helping people to avoid long waits in clinics and for treatment. You may be called to arrange your treatments in this way, and planned treatments may need to be moved to help with running a smooth service.
For more information, health care professionals can see the NICE guidelines for delivery of systemic anticancer treatments and the NHS Clinical guide for the management of non-coronavirus patients requiring acute treatment.
If you receive notification of postponement of your treatment, rest assured that your Urology team will be doing their utmost to reschedule regular treatments and check-ups as soon as possible.
Many of you are understandably concerned or expressing anxiety. There are people who will continue to care for you. Please know, particularly at this time, that you are not alone.
I am on chemotherapy. If I experience sweats/ cough/ shivering should I call NHS 111 or the chemotherapy care line?
You should call the chemotherapy care line.
If I need to self-isolate for more than seven days, what will happen in relation to treatment that has to be done weekly?
Your clinical team are best placed to talk with you about the effect on your treatment and appointments. They will work with you to determine the best course of action in each individual situation.
I have been exposed to the virus and am a carer for someone with cancer. What should I do? Who will look after the person I care for if I am unable to?
The Government is currently advising that if you have symptoms and you live with a vulnerable person, you should try to find somewhere else for them to stay for 14 days. If you provide essential care (such as help with washing, dressing, or preparing meals), you may find this government guidance on Home Care Provision useful.
It is also a good idea to think about what happens if you become unwell. If you need help with care but you're not sure who to contact, or if you do not have family or friends who can help, you can contact your local council who should be able to help you. Carers UK have also produced advice for those currently caring for others
Reduce the risk of infection
Some people with cancer are more at risk of becoming seriously ill if they contract the COVID-19 infection.
Preventive measures to reduce the chances of infection include:
- stay home
- avoid travel and public activities
- wash your hands with soap and hot water often
- cover your nose/mouth with a tissue if coughing or sneezing
- avoid touching your eyes, nose, or mouth with unwashed hands.
Your mental health
Coping with social distancing and self-isolation
We acknowledge the mental strain that social distancing will have on people. You may be well enough to do some tidying up around the house, or do some DIY jobs that have been on your list for ages. Perhaps you could catch up on the box set you haven't yet watched, or learn a new hobby or skill by following some online tutorials.
Exercise is important, so try to continue with your usual activities as far as possible, or substitute them for something you can do at home. Don't forget that putting on your favourite music and dancing is a great way to exercise and it can make you feel less anxious too.
Some more strategies to help this include:
- Joining the Fight Bladder Cancer online private forum
- Calling, video-chatting and messaging friends and family
- Watching TV and movies
- Writing, scrapbooking, and reading
- Knitting, crocheting, de-cluttering, and gardening
- Yoga, mindfulness meditation, and 10-minute workouts
- Playing games, solving jigsaw puzzles, building Lego and creating art
- Listening to podcasts and audiobooks, watching YouTube
For more tips, please see the iPsy-19 Psychological TIPS to cope with COVID-19.
These changes could have financial implications for many people. If you are concerned, you should contact your employer, mortgage provider or relevant organisation. The charity Citizens Advice will also be able to help.
How do I talk to younger people about coronavirus?
For advice on how to talk to younger people about the coronavirus, see advice from the American National Association of School Psychologists.
Where can I get support?
Some of the guidance listed above was developed by One Cancer Voice and Cancer 52 in partnership with NHS England. Fight Bladder Cancer is a proud member of Cancer52.
Get in touch
We’ve tried to make the information on this site as accurate as possible. Whilst we have support from medical professionals to review the general medical content of this site, please remember that only your medical team can give you specific advice about your symptoms or illness. Fight Bladder Cancer is a registered Charitable Incorporated Organisation in Scotland (SC051881), England and Wales (1198773), and was initially established as an unincorporated charity in England and Wales (1157763). It also operates in Northern Ireland.