I can only tell my side of my cancer experience as a carer for my mum.

Having to deal with the fallout after hearing the words ‘You have cancer’ is something I felt ill equipped to deal with but I loved my mum dearly and wanted to do my best.

My story starts around about April 2019. I was preparing to get married in the May and things were a bit hectic. Mum had started to lose weight but put this down to nerves etc. My mum was a very pragmatic octogenarian and we had just celebrated her 84^th birthday in the January. She was still very active, independent, did the shopping for the family each week and even put-up shots in the netball basket with our grown-up kids in the front drive! She never complained, in fact, quite the reveres. It was difficult to have any conversation with my mum about anything that was personal. She very much just wanted to ‘get on with things’.

So, when the wedding was over, and things started to settle down my mum was still losing weight and so I persuaded her to go to the doctors. My mum never went to the doctors (or the dentist). She was somewhat afraid, I think. Anyway, we went to see our GP on 30^th July 2019. He asked for blood and poo test then put her on B12 injections and referred her to South Tyneside Hospital for a lower GI scan. On Tuesday 6^th August my mum attended the clinic at STH presenting with weight loss, loose stools, generalised weakness and tingling in hands and feet. She was on no medication, didn’t drink alcohol but was a smoker. As my mum had no previous weight recorded it was difficult to tell how much weight she had lost but we could tell she was losing weight rapidly. She was 54kg at this point.

She was referred for an urgent chest, abdomen and pelvis scan and the letter we received subsequently mentioned she was on a 2 week wait pathway (whatever that was). Mum was showing no signs of pain and it was decided that at this time there was no need for a CT scan or admission but that she was to keep her appointment that Friday 9^th August for a colonoscopy and chest scan.

On Wednesday 14^th August 2019 my mum was back at the clinic in South Shields Hospital to receive the results of her scan the previous Friday. It was explained to us that my mum had lung cancer. That was what we heard. There was some explanation of a 53mm low density lesion in the right lower lobe of the lung and some other long words but basically, she had cancer. We were told that my mum’s case would be discussed at the weekly MDT meeting (which I now know is a multidisciplinary team) and that an appointment had been made with a respiratory physician that Friday 16^th. At that point she was effectively discharged from the surgical clinic.

Fast forward 2 days later and we were in the Lung clinic. We were seen by a very young Research Fellow.  I must say that the language here was plain and clear – in laymen’s terms – he explained why mum was referred there. He also said that in order to absolutely confirm it was lung cancer he’d like to do another procedure (bronchoscopy) however as mum was feeling unwell and seemed to have a chest infection, it was suggested she start on antibiotics and steroids first to see if this helped. We were sent home at that point, but we had contact numbers for the clinician and also a lung cancer nurse specialist should we have any questions.

We carried on taking mum for B12 injections at the GP and I was administering the antibiotics and morphine as required to mum.

23rd August was the next clinic appointment where mum saw the consultant. It was decided here that due to mums’ weakness and age (too old for treatment @ 84), no further exploratory procedures would be recommended and that there was nothing further they could do for her. It was a case of making sure she was comfortable in what time she had left. Hearing that nothing can be done hit us all like a truck. Mum thought she`d beat it before then. I did too. She was stunned. Fear had her in a sort of denial optimism to that point.  ‘Supportive care’ was the term used. He made a slight adjustment to her medication and an appointment was made for 2 weeks’ time.

6^th September we were back at the clinic. Mum now had a lot of pain and was vomiting – something she had not done before. The GP had prescribed Oramorph, and this was helping slightly and had asked of a suppository to be administered. Mum had almost stopped eating at this point and was very tired. Steroids were not helping her. We were told here again that there was nothing more that the clinician could do and if mum wanted to keep coming to the clinic that was fine but there would be no point.

On the 11^{th of} September we had a home appointment for a Macmillan nurse to visit mum at our home (we lived together). She talked with my mum, who at this point had all but taken to her bed, then sat with my hubby and I. We asked the obvious questions I thought – how long do we have left with her? Is she comfortable? Is there anything else we need to do? We were told mum was poorly and that was it really. The nurse disappeared but not before arranging for a district nurse to visit to see if there was any support they can offer at home.

The nurses came at t time that same day and administered a suppository then left to go get a chair for mum to use at home for the toilet.  During the time they were away the suppository took hold and mum tried to ‘run’ to the toilet. Unfortunately, she fell. It was 6:20pm.

We put her back to bed and the nurses came back @ 6:45pm. They recommended an ambulance as they thought mum had broken her hip, so they made the call at 7:20pm and an ambulance was requested. 111 called me back at 8:20pm to see how mum was as the ambulance was still on its way. At 12:35am the ambulance came and took mum to ST A&E where she was admitted at 01:10am.

The timeline of activity next ran something like – pain relief 01:45 / Bloods taken 02:15 / sent for x-ray 02:20 / back in treatment room 02:40 / ECG 03:30 / pelvic block 03:50 / antibiotics 04:30 / 2^nd x-ray 05:08 / onto ward 9 05:15.

My mum was scheduled for a hip operation that Thursday morning!

We saw mum the next day on the ward – hip operation had gone well, and the physio had her up and walking that Friday am. When I visited mum on the Friday she was sitting up in bed.

I was contacted on the Sunday to tell me that we’d better come in as mum didn’t have long left.

By the Monday she was on oxygen and struggling. She wanted to go home. She wanted the oxygen masks etc off. The hospital team took my husband and I into what looked like a spare utility cupboard to explain that to discharge mum with everything she needed would not be the right thing to do. We talked to mum and decided she would stay that night and see.

Mum passed away at 07:43 the next day – 17^th September.

A week later our Macmillan nurse called us to say how sorry she was to hear of mums passing as she had been on holiday. It would have been enough to just say how sorry she was to hear the news – we didn’t need to know about the holiday as it didn’t really matter.

Its only now that I am involved in the patient and carer group that I can look into our story and maybe pick out some ‘holes’.

Looking back, I am not sure that the hip operation should have taken place. I’m not sure having her walk around the ward as physio was a good idea. She was left alone in corridors at times for the physio to come back!

Having to wait so long for an ambulance didn’t seem like an issue for us as mum was sleeping and ‘comfortable’. The ambulance team were quite flippant but at the time we just put that down to the time of day.

The care from everyone concerned in the cancer environment was really good and everyone spoke to mum, my husband and I in a manner that we needed.

We were not given any information on cancer. We were not made aware of any support groups. Being quite tenacious I used Dr Google. Doesn’t everyone do that?

I researched symptoms and signs, stages of cancer, what to look out for, the colour of skin the ‘death rattle’ – everything I could find out.

All in all, my mum’s cancer journey was quite rapid from diagnosis 14^th August to passing on 17^th September. I am not sure I would do anything differently if asked. Our GP was amazing and kept in touch and made us feel as if he was there for us along the way.

I took on the responsibility of creating and taking the role of Chair of Northern Cancer Voices as I believe passionately that the cancer services across our region can be improved. I also believe that we have willing Trusts to work with us to do that. Patient voice is paramount to improving services. We need more voices to come forward and I hope that by sharing this story it may make others want to share too.