New Gov Guidelines

[Starky67]

Hi my husband had CLL(chronic leukaemia) and has received his hi- lighted letter warning him that he is in the top 5 vulnerable people. I however did not receive a letter and I think I should have and asking to see what others think.

In October I had my right lung removed due to a 3cm lesion. It was thought best to remove the whole thing to be on the safe side to stop spread. Op was successful and fine. In Jan I started having weird feelings in my hand and to cut a long story short 2 rogue cancer cells are in my brain. I am to have them zapped out by cyber knife radiotherapy all next week un Barts. Surely with the only one lung in its own I’m entitled?? Not that it would make much difference to what we are doing as self isolation for a week now. We are both in our early 50s with an 18 yr old. Just wondered what others thought? One of the criteria is radiotherapy for lung cancer but of course mine is brain now ?!?!

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Starky67

Sorry to hear both yourself and your husband have had experience of cancer.

You are both at risk, however the NHS have identified those who are even more at risk of becoming seriously ill and as Covid-19 affects the respiratory system, thus those that are having radiotherapy to the lungs are also in this category.

This is the information on the letters that will be sent out that GOV UK has just placed this on their website: gov.uk/government/publicati...

Macmillan support provide all this information on this link, taken from 'One Cancer Voice' a group of charities that have produced these guidelines for those who have or have had cancer in line with NHS and GOV UK guidelines:

macmillan.org.uk/cancer-inf...

If there is anything you wish to discuss you can either email us at [e-mail] or call our freephone nurse led helpline number on 0800 358 7200

Good luck with your treatment and hope you and your family stay safe and well.

Kind regards

The Roy Castle Support Team

[JanetteR57]

the initial list shows those most at risk but there was already the category beneath this that had been told to social shield such as those with respiratory conditions, asthma, COPD, diabetes etc and those usually eligible for a seasonable flu jab beyond the age group allocated 'flu jabs. I also had sensations in my left hand a couple of years after my surgery and it turned out to be a trapped nerve in my elbow and had surgery - neuropathic pain (my left lobectomy was in Dec 2010) and nerve damage can often cause such sensations but I've recently experienced similar and after a lot of tests have been told it's due to dysfunctional breathing - the mix of Oxygen and carbon dioxide is completely wrong - somehow I've adapted my breathing (I think since some severe chest infections in recent years) so this means my blood isn't as oxygenated as it should be and circulation affected.

those with blood cancers are considered higher than other cancers and respiratory disorders higher than other long term conditions so if people have more than one condition, it would make sense to err on the side of caution. with most of the country now at home, that should be the safest place.I think it is fair that as they are rushing out guidance to include the majority that are most at risk there may be others that may need adding or reassuring on what to do who feel they should have had a letter.

It's a quickly moving situation so sign up to gov.uk updates by email daily if you want the latest official information. good luck to you both...