2.1The first 72 hours

For most people, there’s no big decision to make in the next 72 hours. Sleeping on the choices in front of you is usually fine. Solicitors don’t need to be hired this week. Money doesn’t need to be moved.

The one exception: if your team has already told you a decision is time-critical — for instance, draining fluid from around your lung (a ‘pleural drain’, explained in the glossary), a chemotherapy slot, or a date for a thoracoscopy (a keyhole biopsy through the chest wall, also in the glossary) — ring them with any questions and don’t delay. If your symptoms are getting noticeably worse (new severe pain, sudden breathlessness, confusion, fever), that’s a same-day call to your team or to 111, not a ‘sleep on it’ situation.

What does help in the first three days:

Day 1, before bed.

• Save these numbers in your phone: Mesothelioma UK 0800 169 2409, your clinical nurse specialist (CNS) direct line, your GP’s surgery, NHS 111. If you don’t have a CNS yet, the next call to your team is to ask for one.
• Write down the exact words of the diagnosis you were given. You will forget the words within a week. Use the notes app, paper, whatever you have.
• Tell one person. Not everyone, one person.

Day 2.

• Ring your GP surgery and tell them the diagnosis. Ask to be coded as having mesothelioma so future appointments and prescriptions are joined-up.
• If you work, send your manager a short message saying you’ve had a serious health diagnosis and will be in touch about time off. You don’t have to name the condition yet.

Day 3.

• Read chapter 6.2 of this guide on the Special Rules for terminal illness and the SR1 form. Ask your GP or consultant to complete an SR1 if they haven’t offered. This is the single biggest unlock for benefits, and it is routine for mesothelioma.
• Ring Mesothelioma UK if you haven’t already. The line is staffed by clinical nurse specialists. They will not push you in any direction; they will answer the questions you didn’t realise you could ask.

What we’d ask you not to do this week:

• Sign anything sent to you in the post by an unsolicited claims firm.
• Google survival statistics at 2am. (We know. We do it too. Chapter 1.9 has the honest numbers in daylight.)

Children deserve honesty sooner, not silence. We’re not saying tell them in the next ten minutes; we’re saying plan an age-appropriate, truthful conversation in the next few days, not ‘when things get worse’. Children read their parents’ faces faster than anyone, and silence often frightens them more than the words.

Use clear words. ‘Has cancer’, ‘is dying’ or, when the time comes, ‘has died’. Avoid ‘lost’, ‘gone to sleep’, ‘passed away’ and ‘gone away’ with younger children — those words can confuse a small child or make sleep, journeys or absences frightening. Chapter 5.3 has scripts for under-4s, ages 4–11, teenagers, adult children, and children with learning disabilities. It also signposts Winston’s Wish (winstonswish.org, 08088 020 021), Child Bereavement UK (childbereavementuk.org, 0800 02 888 40) and Childline (0800 1111) — three UK services that exist exactly for these conversations.

The first 72 hours are for getting through these first days. The rest of this guide is here when you’re ready.