The Lockdown Diaries 7: Unwell? This Is Why You Must Come Forward

Observatory

People with suspected conditions are not coming forward for treatment because they are now frightened of hospitals, despite doctors urging them to seek attention. This post is for them.

In March I found myself propelled into a situation more serious than facing a virus – overnight I managed to hit the ‘Extreme Risk’ register on four separate counts just before Lockdown began.

After a GP consultation, my scan was cancelled. Hospitals suddenly shut down wards. I’m NHS because they’re better than private clinics for serious illnesses (any private doctor will tell you so) but suddenly every doctor everywhere was in a meeting.

Several NHS medics tried to admit me but it was my local GP who finally managed it, tracking me down to warn me that there was a real danger of getting left outside the system. I was diagnosed with a rare cancer requiring urgent treatment.

The UK was on its way to becoming the centre of the epidemic in Europe, and London the centre of that centre, and King’s Cross – the busiest crossing point in the entire country – the centre of that centre. So to be diagnosed in the bull’s eye of an epidemic was unnerving.

The  NHS had to rethink their protocols from scratch. Everyone will tell you that the NHS is brilliant at triage. I was admitted at a time of astonishing upheaval. From online articles and brochures you’d be forgiven for thinking there’s a guardian angel of cancer ( a ‘navigator’, apparently) who’ll organise your regime, treatments, prescriptions and mental healthcare. Right now no such person exists.

You cannot be passive through the process. You must be pro-active, aware, ready to adapt and on the lookout for system failures. Familiarise yourself with the physical layout of your hospital; you’ll be seeing lots of different parts of it. Virtually every family I know has someone who works or has worked in the NHS and has advice.

The NHS does not prescribe excessively; they’ll suggest simple over-the-counter remedies rather than throw antibiotics at you. I can’t be given painkillers because they mask coronavirus symptoms. No punches are pulled; one nurse told me, ‘By Week 3 we’ll be your  worst enemy. You’ll be in pain and want to kill us.’

My biggest worry was beginning daily treatments at a busy hospital in many different departments; chemo, radiotherapy, white-cell injections, bloods, pharmacies and so on. But within days there were protection systems that worked, with ID checks, sanitisers, masks and gloves in place (not always, but it was rare that a nurse wouldn’t pull a spare mask from a pocket and say, ‘Have one of mine’).

Physically getting to the hospital became a challenge because I don’t own a car. By my third trip I no longer had any fears about entering the hospital as a high-risk patient. The process was messy but not chaotic, and improved every day. Instead of receptionists, bar codes. Instead of crowded waiting rooms, spaced areas.

The government’s bad start on PPE (which continues, with 100,000 faulty gowns sitting at a Turkish airport because they were ordered without checking safety standards) caused many deaths. Along with much of Europe it failed to foresee a care homes crisis, but appears to have learned from the false start.

What it has shown us is that most private outsourcing is wrong and useless. I spent days on phones and email trying to get a code by which you can have food delivered. By the time it eventually reached me it didn’t work. The private delivery companies had all closed their lists. So my perfectly healthy neighbours can access deliveries by lying about their vulnerability while I am shut out.

As Lockdown eases slightly in the UK, people are largely heeding instructions, with some neighbourhoods edging toward a new kind of normality. The Queen’s speech reiterated the safety message and helped to reaffirm the need for caution. I suspect she is heeded more than any politician.

After treatment yesterday we walked in the woodlands next to the hospital (at the site of ‘The Lonely Hour’ murder) and felt calm. Almost happy.

It’s too early to tell whether the NHS system has worked for me. But if you’re not in it, you are not being diagnosed and the problem will worsen. Be a part of it, no matter how scared you are, and make the call. Get it started today. Confrontation can only bring peace of mind.

28 comments on “The Lockdown Diaries 7: Unwell? This Is Why You Must Come Forward”

  1. Polly Dymock says:

    So, so sorry to read this Chris. Sending sincere wishes that you make a complete recovery very soon.

  2. Jean Mead says:

    So sorry to hear this Chris.
    I am a cancer survivor because they caught it early. I only found out because something occured that was unusual.
    2 things I discovered:
    My Dr was brilliant. Never underestimate a GP!
    Never underestimate the NHS!

    Keep as well as you can, Chris. Love to you and your OH.

  3. Jo W says:

    Stay strong Chris, stay strong and fight the little b****r.

  4. Pat says:

    Hope all goes well for you.

  5. Brian Evans says:

    Good luck Chris. You are an amazing positive man, which must have helped you. I think it is amazing that you have been able to continue these blogs without one iota of the pain, frustration and worry showing through. You are a lesson to us all.

    I don’t do Facebook etc and don’t really understand them, but if you copy this day’s blog onto them, I think you will be an inspiration to others.

  6. Martin Tolley says:

    What Brian said.

  7. Linda says:

    I’m so sorry, you are going through this. Wishing you a speedy and full recovery.

  8. Ian Wilson says:

    Chris, please look after yourself, keep safe and stay positive, you’ll beat this buddy !

  9. Liz Thompson says:

    I’m glad your GP was so effective. And I’m relieved your hospital is so well organised. Look after yourself, and best wishes to you and your husband.
    A friend of mine had her inpatient chemo changed to at home tablets. She’s finished the course now, but she, too, had to rely on neighbours and friends to get shopping. Prior to the lockdown, friends were visiting to keep her company and do housework that she couldn’t manage. With lockdown, and home delivery slots still hit and miss, she’s driving herself to the supermarket and hoping for the best. No post chemo check-ups yet. But that’s in Leeds, not London, and they’re doing their best at all the GP surgeries and local hospitals. Local foodbanks across the whole area are performing miracles, and Morrisons supermarkets have produced food boxes of essential items which they deliver. Someone in my union branch is delivering his allotment surplus of rhubarb to his local distribution points. It brings out the best as well as, I’m afraid, the worst in people. We get regular warnings of phone scams and callers at the door impersonating charities and council employees.
    Over 40 volunteers who sew in Wakefield have made scrubs for Pinderfields hospital staff as they couldn’t obtain them through the system. We’ve made our own face masks, using heavy African wax fabric. It’s hard to get the needle through the fabric, so we hope the virus can’t do it either!

  10. Liz Thompson says:

    It occurs to me that saying ‘who sew in Wakefield’ might be subject to misinterpretation in view of the high security prison there! The volunteers are all free and live locally!

  11. Jan says:

    Thanks for putting your own story and this msg out there Chris.

    Even though these are weird times don’t be backward in coming forward if you’ve got reason to believe something is amiss. Proper important really this …..9 or 10 weeks down the line things will be harder to tackle. Don’t let the virus of doom fear you into inaction.

    Crack on and do what this man did.

    All the best to you I might have a 2nd go at letter writing tomorrow when I’m off. Take it steady Chris.

  12. Andrea yang says:

    I wish you the very best and thank you for sharing your story.

  13. Brooke says:

    If you are on the US side of the pond, please do as Mr. Fowler advises. We lost a maintenance employee, whom we all adored, not to Covid-19, but to a heart attack because he was afraid to go to hospital. Tony was only 40 years old, recently married and we had just celebrated his marriage/birthday.

    On the east coast, hospitals, though strained, have sufficient bed capacity. Primary care docs(UK=GP), cardiologies, oncologists, etc. have telemedicine accessible so you can use your phone to show the doctor your symptoms–gross, I hear you say. Nevertheless effective. And they can manage you through the system if hospital is required.

    Take good care and don’t be a “collateral damage” statistic.

  14. Mary Rutherford says:

    Fact: when I had my second cancer op, I imagined Raymondo came to see me. He is oddly reassuring and comforting. (Prob reminds me of self when used to work in local government). And when I was dozing in bed after chemo, your audiobooks soothed me and made me chuckle. So I owe you.

    Please get well Mr Fowler, and may all pain be kept to the minimum for you.

  15. Roger says:

    I hope all goes well.
    There are still a lot of books in you!

  16. Ken says:

    That’s all good to hear Chris. Very best wishes for success with your treatment.

  17. eggsy says:

    Glad to hear you’re on track, Mr Fowler. And to all others: heed the advice! Outside critical care many in the NHS seem to be worried about the shortage of patients – get anything worrying sorted now.

  18. Ron McMullin says:

    Glad to know you getting care for a frightening medical condition. Hope you get back to work soon.This San Diegan wants to keep tramping through London via the Bryant and May chronicles.
    Ron

  19. Helen Martin says:

    Still sending strong thoughts your way, Chris. Your advice is excellent for Canada, too. We’ve had doctors concerned that the number of patients turning up at emergency is too low and urging people with injuries and illnesses to go. The hospitals have corona patients well segregated and people seem to believe our B.C. head of health care – Dr. Bonnie Henry – because numbers are picking up.
    If you know people with “underlying conditions” like Chris then check on their needs when you go for groceries so they don’t end up eating cans of 6 year old baked beans or green sausages. They probably won’t ask, you know.
    Captain Moore has inspired a 101 year old veteran in Victoria to do likewise and raise money for food banks. Moscow has a female veteran who was a gunner during the second war and served in Stalingrad during the siege. She marched all the way to Berlin. She is now raising money for PPE because, she says, there isn’t enough for the people who are fighting an invisible enemy with not enough equipment. “They are more heroes than we were and we need to support them,” is what she says.

  20. John Howard says:

    Continuing positive waves flowing your way maaaan….

  21. ‘Going to the doctor’ is difficult. It involves an intimacy. With private medicine, there’s fear of the cost. Public medicine, we may feel like a beneficiary of charity, though we’re not – we have paid. So much guilt between us and good health.

  22. Mike says:

    Keep on fighting Chris. We’re all on your side.

  23. John Griffin says:

    Good luck to you, I admire your coolness under fire, Sir.

  24. Cornelia Appleyard says:

    Keep on keeping on – we are all thinking of you.

  25. JanW says:

    Thank you for sharing this and the best best of hopes and wishes for the succesful completion of what I know is very difficult treatment. I am so impressed you continue to work – as I was told when I was a patient for 9 months at the Royal Free ‘ If you are having chemo you don’t need a hobby’ . Yes, we can’t stress enough how important the NHS is, private medicine just won’t deal with acute or chronic medical conditions and if people have problems they really should see a GP, some conditions can develop very quickly.

  26. Kim Froggatt says:

    Good days and bad days. I know this so well.
    I hope today hasn’t been too terrible a day for you.
    Thank you for your words, your knowledge and for these wonderful characters and stories.
    You have made me very happy and you keep me going during challenging times.
    There is a little cat (five months old) who cheers me up everyday, just like you do. He is called Frankie. (tried to attach a photo here but couldn’t) Only a baby and not my cat but loves company and always comes to sit with me when I am outside pacing the patio whilst on lockdown here in Spain and listening to B&M on Audible. I think he is a fan of yours too. Let me know how I might send a photo of Frankie to you.
    So hope you have a better day tomorrow.
    Sending love xx

  27. Frances says:

    Thank you for the message. I am supposed to go for an MRI this month to check on the growth of a tumour. My operation was postponed on the 16th of March as non-essential although it was a major operation. Anything but a life or death emergency was considered non-essential. I have been putting it off because I wonder if it is worth it if they cannot do anything for me even though I think there is a symptom which should be checked. I fear going to the hospital. Just as with the NHS there, hospitals here are segregating people. I have a good doctor and I will take the advice and make an appointment.

    I am glad you are getting good care. I hope you can get your food delivery sorted. It sounds like an extra stress you don’t need. Some previous causes of stress have disappeared but new ones have taken their place. Reading is my escape and I am now doing a second reading of all your books. Enjoying them just as much the second time around. .

  28. Ed DesCamp says:

    Chris – we send our best wishes your way as you (and) your partner) work your way through this. We’ve been where you are, and can empathize. We’re all cheering you on.

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