Happy Birthday!

I turned 25 on October 25th, and although I wasn't expecting a day of adventure, I also wasn't expecting what did happen.

Since leaving the hospice a few weeks ago, things had been relatively uneventful - we'd managed to get out once or twice for a coffee but generally we stayed around the house and just spent time together as a family.

On my birthday morning, Steve was really excited and wanted us to go out for breakfast. He was still having district nurse visits every morning so I suggested we waited until she'd been and gone to see how he felt, and then we could think about getting out of the house.

By the time the nurse arrived, Steve was in unbelievable pain and the hospice staff were waiting for his arrival.

About 10 days later, Steve was allowed home again. During this stay, there had been several more scary conversations and several more tears, but I won't go into detail as I'll be here all day! Plus, I'm feeling a bit drained at the moment so I think it's for the best.

Since coming home, Steve has been stable and the nurse still comes out daily, so she's keeping an eye on things.

He's much more comfortable and much happier at home, and it's a lot nicer for Esmée and I to have him here. He struggles with breathing and is often confused due to huge amounts of medication but the most important thing is that he isn't in anywhere near as much pain, thank goodness.

I'll write again when I have more news.

Thanks for reading!

Love, Gina Xx

A Meeting With Macmillan

Steve has been signed off work for a few weeks and he's needed it.

In the past 3-4 weeks, I can remember two days where he hasn't needed to go to bed by around 3pm due to the excruciating pain he's been experiencing. It really breaks my heart.

Every morning, I watch my husband wincing in pain. His entire body hurts. I watch him carefully counting out his drugs... 2 x Oxycontin Prolonged Release, 2 x Oxycontin Immediate Release, 1 x Dicloflenac, 1 x Citalopram, 4 x Gabapentin, 1 x Omeprazole.

In the afternoon, I watch him take some more, and again in the evening, except this time with a couple of Amitriptyline and a Diazepam added into the mix.

So why, every day, am I still watching him doubled over in pain, unable to speak, unable to stand, unable to hold his daughter, gasping for breath because he is almost crippled from the pain?

We scheduled a meeting with Macmillan to discuss this. Steve has been to see them a few times in the past and they've always been fantastic with ensuring he's on the right medication and trying to make him as comfortable as possible.

I did my research beforehand. I was sure there must be something alternative or additional to painkillers, something longer lasting and more hardcore.

I found some information on epidurals, pain blocks, injections, TENS machines, physiotherapy.

When the keyworker from Macmillan arrived and asked how things were, Steve did his usual "not too bad thanks" - what is it with this stubborn husband of mine that prevents him from being truthful about the way he's feeling?!

I explained that he spends every day in agony. I explained my frustration that he is almost rattling with drugs yet remains in so much pain. I told her that surely, with the amount of drugs he takes, he should be pain free 100% of the time, and that he is far from this.

She was horrified, and agreed something needed to be done. She doesn't specialise in this area but was able to refer us immediately to the person at our Macmillan clinic who does.

We had a meeting with a consultant the following week. We discussed where his pain was, which drugs appeared to help and which did not, and ultimately concluded that Steve already takes the highest dosage allowed of the majority of his current medication so from a tablet point of view, not much more could be done. She increased two of them very slightly, but over the coming days it became evident that this had very little effect, if any.

Yesterday, a physiotherapist came to the house, but she didn't do an awful lot and seemed confused as to what was causing the pain.

She did bring a TENS machine however. We tried that out today and, although early days, it seems to be working. He is still not even close to pain free, but we did notice an improvement and we are grateful for any amount of relief Steve gets.

We are now waiting on CT scan results and then it looks as though the next trial treatment will be underway.

Please keep everything crossed for us and keep us in your thoughts.

Thank you for reading! :)

Lots of love, Gina Xx

Trial Treatment - Session #1

We've just got home from the hospital after Steve's first session of the trial drug he's now on.

Not a huge amount to report - there are no horrific side effects to this drug which is brilliant. Steve feels absolutely fine and the infusion itself only takes an hour, although he has to stay for an hour afterwards each time so they can ensure he doesn't have a reaction to it. That's nothing in comparison to what we're used to, though - with chemotherapy we sometimes spent up to 9 hours in the hospital so it was nice to still have half the day left when it was finished. The worst part for Steve was having the cannula put in - they always struggle to find a vein and had to make three attempts before eventually getting it in and he was not happy!

Esmée came with us - we checked a few weeks ago that this would be okay as I wanted to be with Steve during the treatment, as I have been every time, but do not want to leave her with anyone else yet! They were fine and said it would be in no way harmful to be around other patients and it was lovely having her there. She was a great distraction for us! We could spend hours just staring at her so today that's what we did! She was a big hit with the staff and other patients too and someone even said she'd made their weekend, which was very sweet :)

The next session is in two weeks time and will hopefully be as uneventful as this one. We're really looking forward to it starting to kick in as it's supposed to relieve the pain, fatigue and loss of appetite he's been experiencing. He can't wait to feel a bit more normal again, hopefully in time for Christmas!

I'll keep updating as we go!

Lots of love Xx

Pain and Drugs

I totally forgot to write about the numerous hospital trips following on from Steve's infection and hospital stay.

About a week after being discharged from hospital in July, Steve started to get severe pains in his chest. We had no idea what these pains were or why they were happening, but it was completely debilitating. It happened a few times a day/night to begin with, and he'd be keeled over in agony. There didn't seem to be any lasting effects from the pains - they came on very suddenly, lasted up to a minute and then disappeared just as quickly as they started.

After a few days, the pains were becoming more frequent and more intense.

I had to call an ambulance on two occasions because he fell to his knees and appeared to be struggling to breathe. He was given gas and air on the way to the hospital for the pains but it did nothing to help.

In total, we went to the hospital 4 times regarding these pains. Obviously, each time, we explained Steve's medical history and that we were aware of a tumour around the area where the pains were occurring.

Three times, he was told that he'd probably just pulled something playing golf or when carrying one of his nephews when they'd come to visit. We always reiterated that he had cancer on his left lung where the pains were, and on one occasion an x-ray was performed, but this didn't show anything. They looked for further signs of infection following his recent hospital admission for the Staphylococcal infection in his blood but found nothing.

Steve was sent away with bottles of morphine each time, and each time the bottle was almost empty by the following morning. We went to our GP in the hope that they could prescribe something stronger to deal with the pain and he was given different forms of morphine based medication, but nothing seemed to touch the pain he was feeling.

Eventually, we managed to get an appointment with one of the oncology doctors, who arranged a CT scan. The pains had now been happening for around three weeks - none of the pain relief had been anywhere near sufficient and the doctors seemed to be shrugging their shoulders and not knowing what to do.

The CT scan showed that the tumour was pressing on nerve entrances, causing the intense pains.

Further medication was provided, and although it helped more than the previous methods, Steve was still experiencing a lot of pain several times a day.

Finally, in October, a routine CT scan was carried out (these pains had been going on since he left hospital in JULY!) and when we met with the oncologist to discuss the results, he could clearly see how much Steve was suffering and arranged for Macmillan to contact him immediately.

We're now in mid-November and the pain is *almost* under control - he has a combination of different drugs to take, and takes a minimum of 2320mg per day in total - some of his drugs are to be taken as and when needed, so often he exceeds this amount.

As I said in my previous post, the upcoming trial drug Steve will be on aims to reduce all symptoms of cancer, so hopefully the pain, fatigue, loss of appetite etc caused by the cancer will e eradicated. This is due to start within the next week or two, so I'll do my best to keep up to date with the blog and report back on how it's going!

Lots of love,

Xx

Second Biggest Cancer Killer... Really?!

I'd hardly ever even heard of bowel cancer until Steve's diagnosis. I knew it existed but that was about the extent of my knowledge of the disease. But now everywhere I look I'm seeing that it's the second biggest cancer killer. How is it possible that I knew so little about the symptoms?

It angers me that we know so little about this sort of cancer - I'm sure hundreds, if not thousands of lives would be saved each year if there was a bit more awareness of the many symptoms that can occur.

Maybe it's because there is still a stigma attached when it comes to talking about bottoms and poo. It's heartbreaking to think people die of this disease because they don't want to face 10 minutes of embarrassment at the doctors.

So, for anyone who just happens to have come across my blog and isn't aware of the symptoms, here are some of the most common ones:

• Rectal bleeding (bleeding from your bottom) if it persists for more than 3 weeks.
• Abdominal pain, especially if severe but also if it is constant, or comes and goes.
• A change in bowel habit - going more often, less often, looser stools or passing a clear mucus.
• A lump in your tummy.
• Unexplained tiredness, dizziness and breathlessness.
• Unexplained weight loss.

It is unlikely that most of these symptoms will mean bowel cancer, but any change is worth investigating, even just for peace of mind. Speak to your GP and make sure they take you seriously. Too many people are sent away without a second thought because they are "too young." There is no such thing as too young, so please take notice of what your body is telling you. It really is worth it.

P.S. I have to give credit to Bowel Cancer UK and Beating Bowel Cancer - both have been fantastic in raising awareness as well as providing help, information and support for myself and Steve, along with many others I know who are facing this battle.