No Hope Secondary

I'm angry. I'm not sure if this anger will ever abate. It may lessen in time but I don't think it will truly ever go. Laura was angry too. Her anger was a mixture or frustration, annoyance and helplessness. When Laura was first diagnosed everything was as it should be. She was looked after, there were issues yes, we accept that nothing ever goes smoothly as you would hope given the circumstances, but the care and attention was as you would expect and hope from the NHS. However, when the Secondary diagnosis was confirmed on January 27th, the landscape changed. 

Now, I want to state from the outset that the NHS is an incredible institution and every employee of the NHS from top to bottom have my admiration and gratitude. I'm certainly not going to go into the politics of it all but in my, our, opinion the difference between the primary and secondary diagnosis and resulting care was vast.

It felt to Laura like she was given a year and there were no alternatives truly explored and this resulted an unspoken element of resignation. There was a tectonic shift in attitude. Yes, the care is still there but nowhere near the same level. It's soul destroying. Laura did explore alternatives. It was in her nature. She read, investigated and queried alternatives. She invested time and money on independent specialist consultations. She did so many things to keep her body and mind healthy. She read books on positivity, she changed her diet, she focused on the here and now. Ultimately though, she felt like her questions weren't being answered and alternative treatments and ideas were frowned upon. She felt like she was being treated as if she'd casually Googled ideas and the first thing she read was the first thing she asked. That couldn't have been further from the truth. We understood that an NHS oncologist can't recommend anything that's completely off piste but given the situation, you'd think there would be some leeway or room for a frank, honest, personal discussion. It's not like she was asking to ditch chemotherapy and embrace a more holistic approach. She just wanted to explore all avenues because she had a lot to live for and I believe that that's something we'd all do if we were in her situation. Coming to terms with the fact that you have a year to live and then wanting to maximise that time fully took an incredible amount of mental fortitude. She certainly wasn't lacking in that department. I have said already that a positive mental attitude is essential when it came to putting up a fight in the face of such odds and despite Laura's efforts her Secondary care chipped away at her resolve and, in my opinion, eventually took its toll. 

You just have to read the stories from the FB groups she joined and the need for such groups like Make Seconds Count and Secondary1st to make you realise that this isn't just an issue experienced by Laura alone, many "Seconds" feel this way. Drugs aren't getting the go ahead. 39% of UK adults who have been diagnosed or know someone who has been, feel that the media reports about SBC are not representative, 29% feel that research and support are insufficient and 25% feel the media reports regarding SBC are inaccurate and missing key facts. YouGov statistics tell us that over a quarter of cancer patients are experiencing a delay in treatment in the Durham and Darlington region alone. And that's Primary. So you can imagine the knock on to Secondary. 

Here are just a few totally frustrating examples of what Laura had to face leading up to her passing.

On May 18th, when Laura turned up for her chemo at Bishop Auckland Hospital, they decided that she wasn't fit enough for her treatment, so they made her an appointment to go to Durham University Hospital instead to monitor her health and get further scans. We drove back to Durham and I dropped her off at 4.45pm. She sat in a little room in A&E until 9am the next morning when they eventually to moved her to a ward. Now, we understand the bed situation and the pressures on the NHS, but she could have been at home then went in the next morning. 

She had terminal cancer. 

For. Fucks. Sake. 

As well as the pleura, Laura's cancer had spread to her liver and this was causing the doctors concern. The liver is vital when processing chemo as it has the job of eliminating the toxic effects of chemo. They obviously were keeping a keen eye on the results of her blood tests. 

On Friday 27th of May, after Laura had had her bloods taken in the morning, we got woke up to a phone call at 11:30pm. They were really concerned about the results and wanted her to go into hospital immediately. Scepsis and dying where mentioned in this conversation but Laura flat out refused as they said she had to go through A&E. She told them that she'd go in but only if they could give her an appointment as she wasn't going to sit on A&E for hours, in the middle of the night, in her condition. The doctor mumbled a little and said he'd call back. She was conflicted, the doctor obviously had her worried but she didn't have the energy to be sitting in A&E, on her own, for God knows how long, so she stuck to her guns. 

Call back he did. At 2:30am. We've got an appointment for you at 5:30pm on Saturday. 

They obviously weren't that worried. There's a huge difference between "come in immediately" and "we'll see you tomorrow evening" 

All this is bad enough but when she got there on the Saturday no one knew why she was there and they sent her away. 

Now just let that sink in. 

No. One. Knew. 

Then this. 

On Wednesday 1st of June, we had an appointment with our oncologist. Laura was out of breath a lot, walked everywhere very slowly and wasn't capable of any distances. We had planned the Lion King trip to Edinburgh the next day and wanted assurances that it was OK given her condition. Now given how she felt, maybe you are thinking that time away may not be the best course of action, that rest would be better. You need to consider the over-riding element of time. She, above all, wanted quality time with us. That trumps everything. The oncologist told us it would be fine and while they were worried about her liver, the meds she had would control it. The oncologist also stressed we should take it easy whilst we were away and report if she felt any changes. When we asked about the calls regarding blood tests and hospital visits, she said the departments must have gotten their wires crossed and that she'd "look into it" so they would get the results to her before calling Laura. I knew better than to push this from the look on Laura's face. She was as fed up as I was, probably more. During this visit she had more blood tests. 

The next day, when we were on the train to Edinburgh, we got a call, they were concerned about her liver results again.  So much for looking into it and that the meds we have will control it. They asked us to go to Edinburgh Royal Infirmary as soon as we arrived to collect other meds. 

This is what we had to do:

Arrive in Edinburgh. 

Taxi to Hotel. 

Check in, put luggage on room. 

The four of us immediately take a 30 minute taxi ride to hospital. 

Hospital haven't a clue why we are there. Again. 

Call NHS. NHS Scotland don't know as NHS England haven't told them anything. 

Call our oncologist. She is not available. Left a message.

Decide to leave hospital as we have a dinner reservation and The Lion King to see. 

Just make the reservation 5 mins late. 

Go to see The Lion King. 

Decide we'll call the next morning. 

Underneath all this I was seething. Laura was too but we faced it out for the kids. Our precious time with them was being ruined. You can only imagine what they are thinking. The next morning Laura called NHS Scotland again. NHS Scotland, on hearing the situation did all the things that NHS England seemed incapable of; they contacted our hospital, asked what drugs we needed, asked where in Edinburgh we'd be that day so we could collect the prescription at a chemist as near to us as possible. Could it be that NHS Scotland know what they are doing and were showing NHS England how it is done? Yes, and sadly no. Yes, they did all those things but when we got back to the hotel that evening and opened the bag containing the meds, we found that the "weeks' worth of medication" was actually only one night's worth. They either made a mistake with the prescription or the pharmacist did. Either way, Laura used vast amounts of her dwindling willpower not to cry on front of the kids from sheer frustration. 

We got a call early the next morning. Laura had to go to hospital to get more bloods taken. By this time Laura's determination was being eroded. To make matters worse, something I had eaten had given me food poisoning, so I stayed in the hotel with the kids while a poorly Laura took herself to hospital and back. My heart, until that point, had never felt such pain as she struggled with that journey there and back. She walked miles back to the hotel as she couldn't get a taxi, not even an Uber. It was just horrendous. We got through the rest of our time away; we saw friends, we went to Edinburgh Zoo and we took the kids to the Royal Mile before we left. This is just another example of Laura's incredible willpower. She kept going. In the face of it all, she just kept going.

Ultimately it was all for nothing. On Monday, when we were back home, we got a call from the hospital, could she come on and get bloods taken? And the answer when she told them she got bloods taken on Saturday in Scotland? Sorry, we can't use those test results. 

Laura wanted so badly to make it to chemo the following Wednesday that she put everything into it. She thought, believed, hoped, that once she got to chemo that she'd start to feel better again. 

Everything she had wasn't enough. This was the start of the end. 8 days later Laura left us. 

I sit here reading this. I've written it, rewritten it and written it again. It doesn't accomplish anything. It doesn't make me feel any better. I daresay it makes anyone reading it feel anything but annoyance and sadness. It won't make the kids feel good when they eventually read this either. 

I'm sorry. 

So what is the point? Why write about it? I have always been the kind of person who doesn't waste valuable time and energy on things I cannot affect or change. This is probably the example that disproves the rule. I basically think the only reason for writing it is to give what happened the week following Edinburgh a prelude. I want to give Laura's concerns and worries a voice. The secondary care upset her. But the questions will go unanswered. 

Laura was given a year. She got 139 days. All these issues, the apparent lack of secondary care, the negativity around the chance to explore alternative treatments, the effect on her mental health. Should she have gotten more? Could she have gotten more? She was a fighter. She would never have given up. She would never leave the kids without a fight. Never. Although her body eventually made the decision for her, I wonder what would have happened if her body had been given the maximum chance to fight. I plague myself with these questions. They no longer keep me awake at night as my focus must be the children but there are times, when I sit alone, and think what if? 

What. If.