Neuropathic Pain & Poor A&E Experience

[Skelly1018]

Hi, I was diagnosed with a stage 4 small cell lung cancer in February it had metastasized into 8 areas, I am 58 years old. It was a bit of a shock and it has also shocked my medical team as I am a keen runner, to the point I am a top 10 ranked (age group) in the UK and had qualified to run in the World Masters at the New York Marathon later this year. I ran London (2.48) and then Chester English masters in a time of 2.48 back in October, I was completing 10 mile races in 60 minutes and under as late as November, so having lung cancer being as fit as I am is a surprise.

My treatment included chemo and immunotherapy and a bone therapy was set at 100% dosage due to my fitness. I was warned things would be brutal

My meds included in the hospital Dexamethasone, Carboplatin, Etoposide, Atezolizumab. At home I then had a course of tablets and injections including Filgrastim, Etoposide, Dexamethasone Etoposide , Loperamide & Metoclopramide.

I had oral morphine and paracetamol along with 2 x10 mg of slow release morphine for pain management. After 10 days the slow release was increased to15 mg due to a chronic pain in the ribs on my "good' lung side. Two weeks after my first treatment the pain I was experiencing in my chest/ribs had become unbearable and had restricted every area of my life. All I was told that it was a side affect and keep up with the pain relief.

I then experienced an episode of dizziness, tingling in my feet, hands and legs. Then followed slurred speech and slow breathing. Not normal, so we call the hospital and trip to A&E is arranged. To cut a long story short I was basically thrown out of A&E for bed hogging. The following morning I was running a temp of 38.9 and the hospital said come back. That took some persuading as I'd been kicked out 8 hours before.

To short cut the story, the head of the oncology unit broke down my history of pain and identified a neuropathy pain and recommended we talk with therapist palliative team, that has worked wonders. Whilst they transitioned my meds they admitted me. The following morning I experienced the same episode that took me to A&E 48 hours previously. Luckily I had a team of Dr's nurses & consultants with me in moments as I'd been kept in AEU. They soon saw signs that they were unhappy with. So a new CT scan & MRI Brain scan were hastily arranged. The cancer has spread now to the left lung where my chronic pain was delivered from, my neck bones and also into my brain.

The A&E Dr had not listened or taken on board the symptoms I'd described with regards my episode.

The chronic pain I was encountering has now delayed my second round of treatment as my body has taken too much of a hammering. I had reported the pain on 5 different occasions and eventually referred to my GP who increased my slow release morphine which made zero distance. I've been told the pain I was in was not normal. They could see I was double up in agony, I struggled to get in and out of bed and I could not sleep.

During all this the joke that is Macmillan were no where to be seen as they have not contacted us, I only had the ward number. I felt lost, abandoned & isolated. I wanted to not bother with my 2nd treatment & then after the experience of the leads Dr in A&E I was desperately low and felt useless.

Luckily due to the wonderful oncology manager Gemma and the team in AEU & despite now having a new prognosis reducing my average to probably 8 months I am feeling great.

So my question is who else has neuropathic pain or pain that is not being managed and honor what will you do?

And secondly

How on earth are we supposed to deal with idiots who run a bed clearing service in A&E, the chap stood over me telling me to hurry up and pack or move my stuff as he wanted to get a sick patient in my cubicle. I reminded him I was dying of cancer and had approximately 11. I'm afraid all I could do then was cry, I'd never been so humiliated or made to feel so worthless. It was as if he was saying ' Go on move on your dead any way I can concentrate on the living' (Yes my wife has complained to Pals)

Thanks for your time reading this. I'm new to the group so apologies if my question is long winded

Cheers

Seán

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hi Seán

So very sorry to read of your cancer journey so far and this has been a horrible experience for you. Pain should always be a priority and it should continually be assessed with dose adjustment as necessary, or further investigations.

It is very understandable your anger and frustration at the system and no-one should be made to feel like you did. It is very disappointing to hear how you were treated and especially when you are ill , it can be so challenging when you are not listened to. This must have been very distressing and stressful for you both.

Given you have been so fit as a runner, this must be especially difficult for you and to adapt to a complete change in your quality of life.

You may wish to feedback to the NHS Care Opinion: careopinion.org.uk/services... and where one of the managers usually gets back to the person quite quickly.

Neuropathic pain can be common from some cancer treatments and can be tricky to manage, however the pain control team within oncology are usually experienced at dealing with this, and it sounds like you had the right team to help you with this, perhaps there needs to more awareness of this out with the oncology team to identify the pain earlier.

If you are interested this is our booklet on brain metastases: roycastle.org/app/uploads/2...

We offer one to one phone support or online support groups and you can view and register for these through this link: roycastle.org/help-and-supp... alternatively you can email our support coordinator Ellen Knapp at [e-mail]

Please know that we are here to support you in any way that we can, you or your wife are welcome to contact our ask the nurses on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600 or you can email us at [e-mail]

I hope you receive the best care from now on as everyone deserves this with cancer.

Kind regards

Ask the nurse

The Roy Castle Support Team

[janeg4]

Well as long as you've complained ...

[sassassas]

Hi Sean

I'm horrified to read about your experience - no-one should receive this kind of treatment, let alone poor medical care. PALS can be really effective and I hope you and your wife get some help and support from them.

You ask about neuropathy. My husband (diagnosed Feb '21 with stage 4 NSCLC, treated with chemo & atezo, has been off all treatment for a year now) is also a keen athlete, mostly cycling but he's done some running and triathlons in the past. That said, he's nothing like your level! He really struggled with neuropathy from the chemo and also bone pain from the Filgrastim. Other than the painkillers, he was definitely helped by exercising. Usually he was only capable of a slow walk, and perhaps it was just the ability to get out of the house, but this made a real difference for him.

Please do continue to ask anything you need to of the community here - I know for us it has been an incredible resource over the years.

Best wishes, Sarah