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

Race For Life 2015

It's been almost two months since we took part in the Race For Life and I've just realised I hadn't done an update for you, so here it is :)

Esmée and I signed up to walk the Race For Life in Bournemouth, where we live, and we absolutely loved it. I got a group of friends involved and those who have young children got them involved too.

My sister-in-law and I got ready together in the morning - we wore pink tops and pink tutus and she did our makeup for us - bright pink!!

I wore Esmée in a carrier and we met the other girls at the seafront near the start line, who were also all dressed in pink.

Esmée had a hand made sign which said "I'm Racing For Daddy" with a photo of them together.

My total amount raised was £1374.00 and I received an email last month telling me I was in the top 3% of fundraisers for June! I'm so happy with that total - my initial target was £100! I'm absolutely blown away by people's generosity. Thank you so much.

The work that Cancer Research UK does is absolutely incredible and I'm so immensely proud to have been part of such a fantastic event.

We are so grateful for all of the donations and support and we can't wait to get involved in more fundraisers!

Big, scary meetings - a bad week

Hi guys,

Since I last wrote, there have been a few changes happening and I'm just about ready to go into it all.

On Tuesday 28th July, Steve went to the hospital for his pre-chemo appointment ready for treatment on the Friday.

We were right in the middle of moving house so we decided I'd stay at home with Esmée and keep packing whilst he went to his appointment. These appointments are never eventful and the clinic is usually running late so it seemed pointless for us all to go.

When Steve came to meet me at the house afterwards, I instantly knew something was wrong.

They had told us previously that Steve's breathlessness was caused by fluid on the lungs, which would need to be drained at some stage.

However, at this appointment,  the doctor told Steve that the X-ray showed the treatment had stopped working altogether and the cancer had quite drastically spread and grown, now covering huge portions of both lungs.

We were in complete shock - the last CT scan had shown that the disease was stable and the plan was to continue with it indefinitely.

The doctor mentioned a second clinical trial which Steve may be eligible for, and told him she was cancelling the current trial (Xilonix) with immediate effect.

We spent the rest of the day feeling as though we were floating, but not in that nice, dreamy way. As though the world had disappeared from beneath us. It was like we were drowning or struggling to breath. Anyone know has been through something like this will know the feeling.

We travelled the couple of miles to Steve's parents house to break the news, and of course they were just as devastated. Steve's brother, sister in law and nephews were also there, so we all rallied round for a chat, told them everything we knew and promised each other we must all stay strong and positive.

We arrived home around 5.30pm, I think.

At around 8pm, I noticed I had a missed call from my maternal Nan. I called her back, to be told that my mum was not expected to make it through the night. She had been in hospital since Sunday and had taken a bad turn. Her sodium levels were extremely low and a salt drip didn't appear to be helping. The doctors decided to stop the salt drip.

Steve and I hardly slept, and in the morning, when I heard my mum had improved slightly over night, we decided to go and visit her.

We were surprised by how well she seemed - thankfully, she didn't know quite how poorly she was, and so was in good spirits. She was chatty, playful with Esmée and was making jokes.

She was moved to the hospice a few days later and we're waiting to find out whether she'll stay ther for the duration of her life, or whether she'll go home or to a different sort of care home for a few weeks before going back to the hospice. We hope she can either stay where she is, or go to another care home for a while, as she's been getting confused and is quite nervous being home alone when her partner is at work. My nan drops in to see her, but my grandad has late stages of Parkinson's disease and so he also needs constant care from her.

We had a meeting with our oncologist this week regarding the plan of action for Steve's treatment, but we didn't find out anything new. We had some clarification on what we heard last week, and we are now waiting for scans and some more information on the trial.

Hopefully we won't have to wait too long and I can update again soon

Thank you so much for the lovely messages and continued support, it's very much appreciated!

Lots of love Xx

Happy Thoughts Required!

Hi everyone,

Steve was signed off work for a week because he hadn't been feeling well and was struggling with long days. I'm glad because it was clear to anyone who knows him that he needed a bit of time to recharge his batteries and rest his body and mind.

A few days ago marked the 3rd anniversary of Steve's diagnosis, and it was quite emotional thinking back to that awful day and remembering the journey we've been on ever since. I'm so proud of him!

In other news, my mum is unfortunately feeling extremely low about her health. She is in pain all the time, is eating little and sleeping lots.

She had a GP appointment a couple of days ago and was informed that her cancer is not only in her lungs and adrenal gland, but is also now in her bones.

I would really appreciate prayers for her, and for Steve, if you are religious or just lots of happy, positive vibes being sent their way if not.

Thank you :)

Lots of love Xx

Bittersweet Family Times

Yesterday I went to visit my mum. My dad, brother, nephew and Esmée came with me and it was quite an emotional day.

My mum is deteriorating quite quickly and has an oxygen tank with her at all times to help her breathe. She didn't need it the entire time we were there but as the day went on she became reliant on it. I found it quite shocking and upsetting to see. When my dad took her back to her flat later in the day, there was lots of breathing equipment and other things that made him realise how serious it all is - he's felt for a while that things may look worse than they actually are, but I think yesterday changed his mind slightly.

She was in good spirits though. Her faith has become much stronger since her diagnosis and she often tells my nan that she isn't scared. She's been reading up on eternity and has visited the chapel at the hospice she'll be moving to when the time comes.

A very sad aspect of yesterday is that it's likely it would have been the last time my brother, my mum and I were together. My brother goes back to New Zealand tomorrow and is visiting her one last time on his way to the airport, and he isn't able to come back for another couple of years so it's unlikely they'll see each other again. The whole situation is just heartbreaking and it's difficult to find any positives to her situation at the moment, other than at least he's been able to spend some time with her over the past 6 weeks.

My mum and I as a baby, and her with Esmée yesterday

Steve has been feeling slightly better recently, his treatment is going well and we had a nebuliser delivered to our house the other day so that if his asthma plays up and his inhaler doesn't help sufficiently, he can spend a few minutes using that to relieve the symptoms.

He's used it once so far and felt very light headed afterwards, but his chest felt much better within a couple of minutes.

We're also going to book a holiday for October time so that we have something to look forward to! We've only ever been abroad for two weddings and for a mini honeymoon after our wedding, each for a couple of days, so we're looking forward to organising a proper first family holiday.

I'll write again when I have more news :)

Thanks for reading and for all the well-wishes!

Lots of love Xx

A little scare & an update

For a few weeks, Steve has been struggling to catch his breath. He's always had asthma and has been hospitalised with it before, so we put it down to the recent weather changes and crossed our fingers that it would improve.

Despite his use of inhalers, his breathing didn't seem to get any better.

Last night, he told me he'd called the hospital during the day and asked to be checked over because he was really struggling at work.

He went into hospital this morning on his way to work and was put on a nebuliser for 30 minutes. He was told that if he felt better after 30 minutes, he was free to leave. If not, they would send him for scans and Xrays because that would indicate that the cancer in his lungs was growing and spreading further,

Obviously, we both had an unsettled night due to worrying. Anybody who has been through, or knows somebody who has been through a cancer diagnosis will be aware of the "scanxiety" you feel when waiting for results. The thought that our world may be turned on its head yet again gave me that awful, familiar feeling in the pit of my stomach along with the hot, clammy feeling and heart-beating-out-of-my-chest sensation. Steve wasn't as worried as I was because he felt that

After 30 minutes on the nebuliser, Steve was calling me on his way to work from the hospital telling me he'd instantly felt better and therefore he, and the oncologist, were both confident that the weather was the cause for the troubles with his breathing and no further investigation was necessary.

We are so incredibly relieved.

I'm going to make sure he takes his preventative inhaler as well as the blue one he takes during an attack, as he tends to forget about that one. Hopefully that will help and we won't have another scare like that!

With regards to my mum, she has been released from the hospital and is now home after a very long 11 weeks. She's been quite emotional and although she's over the moon to be home, she's found it quire difficult to adjust and it's been overwhelming for her. Having suffered with mental illness for a very long time, she's found the diagnosis and the following weeks particularly hard to take.

She tells me she spends a lot of time sleeping and doesn't have much of an appetite most of the time. She was in tremendous pain but thankfully her doctors have finally managed to get that under control so she's feeling slightly better.

My brother, sister-in-law and nephew are now over from New Zealand and have been spending time with her, which I know has been lovely for them all (and I've loved having lots of cuddles with my little Kiwi!).

I'll update again soon :)

Thanks for reading.

Xx

Other News

Hello :)

Steve had Cycle #13 of the trial treatment today. All went well, aside from the fact we've both been poorly so the day was even more exhausting than the average hospital day.

Esmée came along too - the staff love her and she always gets lots of attention. The receptionist told us once that some of the older patients had commented on how nice it was to have her there.

I wanted to write a post about some slightly off-topic things that are going on with me at the moment.

In December, I got a call from my mum telling me that she'd been having lots of problems with her breathing along with chest pains, and that her GP had referred her for tests and told her to prepare for bad news. This may seem dramatic, but my mum has had breast cancer twice in the past and her GP wasn't willing to take any chances or give her false hope. He appeared to be quite concerned that her cancer was back.

Tests were carried out but lots kept coming back inconclusive. It was eventually decided that it was cancer, but they didn't know whether it was lung cancer or breast cancer.

Lots more tests have been carried out, and we now know that there is cancer in her lungs, breasts and adrenal gland. They believe it started as breast cancer.

They started Mum on a chemotherapy called Capecitabine (this is the tablet chemo Steve was first given in 2012 alongside the infusion of Oxaliplatin), but her breathing worsened within three weeks of taking the pills and she was hospitalised and the treatment stopped.

She is not currently having treatment for the cancer as she is being treated for some other issues, including several blood clots on her lungs.

I don't remember if I've mentioned my brother before. Whilst working on cruise ships about 4 years ago, he met an amazing girl from New Zealand. He moved out there to be with her and they have a son.

My mum was due to go and visit them all in January, but due to her ill health she was unable to go. Instead, they are going to come home and stay for a while so they can see my mum and spend some time with us all. They are due back in the next few weeks. It's an awful situation but we're pleased he's able to come home and see us all, especially our mum.

As I have done for the last three years, I am remaining as positive as I can. My mum doesn't live locally to me so although I have visited her a few times, I haven't been attending any hospital appointments. Steve has, of course, been as supportive as ever and has made sure I'm well looked after. He's my best friend and we are very good at taking care of each other and knowing what the other needs. Our little angel keeps me busy and keeps my mind from wondering most of the time.

I have decided to take part in the Race For Life this June with Esmée. A few friends and their babies will also be doing the race and my brother's girlfriend is also going to take part as they'll still be in the UK at the time. We're all really looking foward to it, although I'm quite nervous about the emotions. It's more than just a race (not that I'll be running with my baby, more like skipping and dancing!). I'm sure the atmosphere is going to be incredible but I worry that three years of emotions will come pouring out at the finish line when I see my hubby waiting for us!

Wish us luck, and if you wish to donate please go to www.justgiving.co.uk/ginashergold :) Thank you so much to everyone who has already donated, we are so grateful.

That's my update for today, I apologise for the rambling (not much planning went into this post!).

I will update again soon :)

Lots of love Xx