Early Days

I didn't know if or how I was going to end this blog, so decided to take a break from it whilst I tried to figure it out.

I'm on a completely different journey now, not one of cancer, but one of loss on an absolutely indescribable scale and I think I'll keep writing. It's quite therapeutic and maybe, when Esmée is old enough, I might let her read through some of the posts so she can read all about this time in her life and hopefully understand more about what's been happening.

In early December, I wrote a little bit about Steve's death, the immediate aftermath and the funeral. This was written through a very cloudy mind and although things are still foggy, they're a little bit clearer now.

Steve died very suddenly on the day, it wasn't at all expected. I had fought to get Steve out of the hospice and back home about 10 days before he died. I never second-guessed my decision to do this despite doctors advising me to keep him in the hospice, and found it reassuring that he died where I knew he wanted to be.

I won't go into detail about his final hours, those are very private moments between him and myself, as well as his family who were present at the time, but I'll be forever grateful that I was able to curl up with him on our bed, with my arms completely around him and tell him all the things I wanted to tell him.

The days and weeks following Steve's death are a complete blur. We're approaching the 4 month mark since he died and yet I can't really remember anything in particular that has happened since 12th November.

I know I went to see him several times in the funeral home. I remember people saying "that'll be really hard" or "I bet that was really difficult" but for me, it was a relief to just be with him.

Then there was the funeral; I remember some of that. As far as funerals go, it was pretty impressive.

I also remember his birthday. 22nd December; very soon after his death to already be dealing with a "first" without him and I didn't know what to do. I'd made plans to see some of his closest friends and family. I woke up in the morning feeling completely and utterly lost without him. I hadn't collected his ashes from the Crematorium yet as I hadn't decided what to do with them. But on his birthday, I realised that he needed to be with me. I walked up the to Crematorium, which is at the top of my road, and sobbed that I needed to collect my husband because it was his birthday. Whilst I was there, I ordered a ring from Ashes Into Glass, a company which makes the most beautiful memorial jewellery and other things incorporating the ashes of a loved one, which would arrive 6-8 weeks later. I felt better that I had my boy with me on his birthday. I bought a "Red Robin" tree and eventually I'll plant that in the garden in his memory.

Christmas is a complete blur. I made it as lovely as possible for Esmée but I secretly couldn't wait for it to be over.

I bought myself a pretty little diary for 2016 and decided to fill my days with things for Esmée and I to do. I never want to do much but how is that fair on my 17 month old toddler who goes stir crazy if we're not out the house within an hour of breakfast? I feel so lucky to have her, she is my rock as well as my motivation to get out everyday and get some fresh air.

I think about Steve and what he would want me to do. We never had that sort of conversation. Within days of discovering his illness was terminal, he was bedridden with sciatica caused by tumours in his spine and his health declined at an extremely rapid rate. This meant he was never really lucid for longer than an hour at a time, if that. But I know my husband, I know his zest for life - it's one of the many features about him that I fell completely in love with - and I don't think he'd be impressed if I wasted my life, the one I'm lucky enough to still have, shutting myself indoors and not making the most of it when his, that he wanted so desperately to hold onto, was snatched away from him in such a cruel and unjust way.

I've found a pattern that, at the moment, seems to be working for us to get us through the days. I'm very aware that children pick up on a lot more than we sometimes realise, they just can't always tell us. Because of this, whilst Esmée is still too young to understand what's happening, I only let her see her Mummy happy. So every day, we get up and I get myself dressed, put some make-up on and we go out, whether it's to the park, the farm, the aquarium, into town just to wonder around, to a friend's house - anything, as long as we don't sit and wallow indoors. In the evening, she kisses one of the many photos of her Daddy on our bedroom walls. waves and smiles, I sing her the song he used to sing her and she goes to sleep. Once she's sound asleep, I let myself feel however I'm feeling. Sometimes I can look at photos for hours and smile and laugh, other times my heart physically aches and I feel like I can't breathe but whatever happens, she doesn't see this side. She's a little girl and until she's old enough for me to explain why I'm sad and that it isn't in any way her fault, I don't want her to see it. I don't want to burden her with things she's too young to comprehend and potentially allow her to feel responsible for my sadness. She's my light during these difficult times and I want her to always know that.

People often comment on what a happy child she is, and I have to agree. I have a very content little girl and find it so reassuring to know that I must be pretty great at being her Mummy!

Valentine's Day was difficult. I planned a little date day with Esmée, which was lovely although I hadn't expected quite so many loved up couples to have made the same plans as us and seemed to be everywhere we went.

Mother's Day this year was tough too, not only because I've lost the person who would make sure I was spoilt on Mother's Day but also because 6 weeks after Steve died, my mum lost her own battle with cancer, too. I spent Mother's Day with Steve's parents, who are of course going through the unimaginable, and we managed to make a nice day of it through our heartbreak. I've always felt close to them and I'm sure that will continue.

I'll leave it there for now as I think I've covered the main parts so far.

I've been blown away by the love and support I've received from most of my friends, family and even strangers. People's kindness during the hardest time that I have ever, and will ever experience will not be forgotten, I'm so very grateful.

Thank you for reading.

Gina Xx

Pre-diagnosis - one of the happiest times of our lives xx

Fly high, Superman xx

It's been 24 days since Steve died. He'd been chatting to me in the morning, albeit slightly slurred due to the amount of medication he was taking. The nurse had come to change his syringe driver, as she did every morning. She left the house around 10.45am, and at 12.30pm, she was at the side of our bed, pronouncing his death as he slipped away in my arms with his family around him, holding his hands.

We knew Steve wasn't going to get better, but we thought he had longer. Nobody expected Thursday 12th November to be the day. Shock set in immediately, for all of us.

Esmée played downstairs with a few family members, blissfully unaware of the devastating events taking place in the room above her.

I don't remember much of the last three weeks. The days have merged into one indescribably painful, yet completely surreal nightmare. I feel as though I'm having an out-of-body experience. It's like I'm floating, watching someone else's life fall apart in front of them, or as though I'm watching what should be happening 60 years from now, if it really had to happen at all.

I threw myself into planning Steve's funeral. Everything had to be absolutely right, the perfect send-off for the perfect husband and daddy. Steve's parents and I got together several times to discuss factors we needed to consider and ideas we'd had.

I made arrangements for a florist to visit the house - the same florist who did such a stunning job on our wedding flowers just two short years ago. We talked about various ideas - sprays, heart shapes, bright colours but not too "girly" - before eventually settling on something very unusual, and very "Steve" - a Superman tribute. He'd been known as Superman for years and had the outfit to match. He was my Superman, and everyone's Superman.

Steve's dad looked around some local venues to find a place fitting for a celebration following the funeral, and after showing me the favourites, we agreed on a beautiful harbour side hotel about 15 minutes from our house.

Steve's sister and brother-in-law took to designing and printing the Order Of Service cards for the funeral, which were absolutely beautiful. We included a poem written about Steve by one of his good friends.

I ordered personalised packets of forget-me-not seeds for mourners to take away and plant in his memory, and I arranged for the crematorium staff play a short, funny clip of Steve at the end of the service, right before the exit music played.

We all agreed that as a reflection of Steve's fun-loving, confident and hilarious personality, we would ask guests to dress in bright colours. This was to be the celebration of a wonderful (although short) life, and the beautiful soul of my husband.

The funeral was nothing short of the perfect send-off my incredible husband deserved. We had booked the biggest chapel in the area as Steve has always been so popular. There was no room left to stand, let alone sit. There were around 300+ people there, and I was inundated with apologies from people who'd wanted, but weren't able, to attend. We decided on a Humanist service, as Steve didn't have any particular religious beliefs. My dad delivered an amazing eulogy, and a close friend of Steve's spoke brilliantly as well. I believe we all did him proud and I don't think it could have gone any better than it did.

Now that the shock has started to wear off, I feel the deepest, rawest sadness I've ever known, as though a part of me has died with my husband. The fact that his death was expected doesn't take away from the immense shock, emptiness and crushing heartbreak. I knew within days of meeting Steve that he was the person I'd spend my life with. Everyone knew it, it couldn't have been more obvious that we were made for each other. I'm now facing life without him and that scares and saddens me beyond words.

He has, however, left me the most beautiful legacy, and I thank him everyday for Esmée. There hasn't been a day go past that she hasn't made me laugh. She keeps me strong despite the pain in my heart, and reminds me why I need to keep pushing on. Her little giggle is infectious, I can't help but laugh when she does. She gives me kisses and cuddles, strokes my face, climbs all over me and is an absolute joy. She is truly my world and for that reason, I will find a way to be "okay".

Esmée is at an age where she doesn't understand what's happened, if anything, but still recognises Steve in photos. She reaches out for them, smiling, clapping and waving. It breaks my heart but warms it at the same time, to know that she knows her daddy.

There have been days when I've woken up feeling strong and ready to take on the world. There are other days when the room spins around me, I'm sick and every breath in feels like an axe to the heart, a bit like when it's freezing cold outside and you take a deep breath in and it really hurts, except 100 times worse. I've had nightmares which have had me in tears before I've even opened my eyes, and I've had nicer dreams about him too. I haven't felt "alone" - I feel like he's with me all the time. I really believe that he is.

For now, I've adopted the method of taking things one hour at a time. When I absolutely cannot see a way to get through the rest of my life with this big Steve-shaped hole, I look at the time, and tell myself to just focus on getting through the next hour. So far, I have successfully made it through every hour that I've tried to make it through, so I think I'm doing okay. Esmée keeps me going and has me smiling constantly, despite the pain in my heart. I see Steve appear strongly in her and that brings me more comfort than I can explain.

I've been completely overwhelmed by the support and love I've had from my friends and family, and from Steve's. I knew they'd all be there for Esmée and I, but they've really carried me through the past few weeks and I'm so grateful for that.

I don't know where this blog is going to go now, if anywhere. But I thank you so much for reading, and I may write again one day.

Love, Gina x

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 Brief Update

I've been putting off writing this post as I feel like it would be far too emotionally draining to fully relive the events of the past few weeks, so I thought I'd do a brief post explaining some of what's gone on.

In a nutshell, there have been three emergency call-outs, several changes in drugs and dosages, two panic attacks, a chest infection, radiotherapy, countless entire days spent in bed due to severe pain and exhaustion, a four night stay in a hospice, one or two heated discussions with medical professionals, some pretty odd conversations sparked by mild hallucinations (a side effect of one of the drugs), a syringe driver, some very scary and surreal conversations between myself and consultants, some family members rushing down to visit after a bad turn, a reclining chair and wheelchair being delivered, daily visits from nurses and/or doctors, and, needless to say, some tears.

I don't want to go into the things I was told by the consultants as I find it all too upsetting and scarily real.

Steve's pain still isn't close to be "under control" and at the moment he's extremely drowsy most of the time, too.

Emotionally, we're doing okay at the moment - I thank our lucky stars that we have that gorgeous little girl to keep us entertained and occupied every day. She really does light up our lives and keep us going. We have so much fun with her and she keeps us distracted.

I'm going to leave it there as I don't want to go into detail just yet, but I want to thank everyone for the continued love and support. We have some truly incredible friends and family and have been totally blown away by everyone's kindness. It means the world.

Love, Gina xx

Heartbreak. The Worst One Yet

I'm going to try and keep this one relatively short because I don't think my brain can handle too much more right now.

The last time I wrote, we were waiting for a CT scan and the for the new trial treatment to start.

For the past 6(ish) weeks, we've been going into hospital regularly for blood tests, consent forms and so on to get Steve up and running on the trial, and on Thursday last week he had a physical exam to make sure he was well enough and showing no sign of infection etc, with a view to him starting the trial this week.

On Thursday afternoon, we had a call to say that it turns out the trial had been closed for a while and that Steve could no longer participate. They asked us to come in today to discuss other options.

So today, we went in for a meeting with the oncologist and were hoping he would have news on a different trial.

Instead, he told us that there is currently nothing available and we are now facing "incurable".

We are absolutely devastated, shocked beyond belief, and heartbroken.

We also learnt that his spine has got in on the cancer action, and more than likely his liver, too, although that part isn't confirmed yet.

They will keep looking out for trials, and as soon as one comes up that Steve is eligible for, we will be informed and he'll be put forward for it (provided he wants to be).

Steve has slept for most of today through sheer exhaustion.

I feel numb to the point where I can't feel my feet on the ground, but at the same time, I'm  in more pain than I've ever known.

We have both agreed that we will not give up, we will keep fighting and live every day to the fullest for our baby girl and for each other.

Thanks for reading.

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

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

Happy New Year :)

So we're coming to the end of another very surreal year for the Shergolds!

New Year's Eve always has me feeling nostalgic and I'm writing this feeling extremely lucky with my husband and daughter next to me (looking ridiculously alike).

In January 2014, about 6 weeks after Steve's doctor gave us the go-ahead to start trying for a baby if we wanted to, we discovered I had a little tiny wriggly person on board. Nine days later, a routine scan showed that Steve's cancer hadn't gone after all, and that it was now dotted around his lung. Two days after this, he started another round of chemotherapy. Some call this luck - we think it's fate. Our little girl is a miracle we weren't sure would ever happen for us and I believe more than ever that things happen for a reason.

In July, as I talked about in a previous post, Steve became very poorly with a staphylococcal infection which tends to shut down the vital organs one by one. When he was allowed to come home, I was told that I was very lucky to be bringing him home and that I'd come very close to losing him. Again, luck? Or another miracle?

We stay positive and live for every moment because we have to - what sort of life would it be if we didn't? We don't waste time wondering why.

We play the hand we were dealt and we play it the best we can. We've made the most of what we've been given.

I believe that the heaviest burdens are placed upon the shoulders of those who can carry their weight and my husband proves this to me every day.

So tonight, my glass (mug of hot chocolate) will be raised to him, for giving me the most amazing gift, for making sure I feel loved every day, for continuing to teach me things about myself and for genuinely being the most inspiring person I have ever known.

Happy New Year everyone!

Lots of love Xx

Trial Treatment - Session #2

Hi all,

A very brief one today!

Steve had his second treatment on Friday and again, all went smoothly. So far, no awful side effects - he felt tired afterwards but we put that down to spending a few hours in hospital - we've both always found hospitals quite draining so we don't think it has anything to do with the treatment.

Not much else to report about that which I'm thankful for - Steve's been off work for a little while so we've been enjoying spending some time together as a new little family and we're really loving it.

Esmée is absolutely lovely and lights up our lives everyday. We feel so incredibly blessed to have her. She makes everything easier to cope with and makes us fight even harder than before.

I'll probably post again before Christmas but if I don't, hope you all have a magical time! :)

Lots of love 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

Reflections

We go into hospital tomorrow for Steve's first infusion of the trial drug he's going to be on for the next 8-16 weeks. With that coming up, and having re-read some of my earlier blog posts lately, I've been reflecting quite a bit on the past few years.

To be honest, I've spent the past couple of months blissfully trying to ignore everything health-related that's been going on so we could focus on the baby, and it's been quite nice. That horrible dark cloud of dread has come over me every time someone has asked about treatment, but I know it's totally unrealistic to not think or talk about it, and that we're really lucky to have so many people around us who care. It's never been far from my mind, however much I've tried to ignore it recently.

I also feel guilty for trying to forget about it for a while - I always preach about how we need to talk more about bowel cancer to raise awareness and make sure people know what to look for and how important it is to discuss, so I'm disappointed in myself for not practicing that recently.

Steve's illness came up in conversation with one of the midwives during my pregnancy when I was admitted to hospital with a virus. She was putting a cannula into my hand to give me some fluids as I was severely dehydrated and Steve casually mentioned how strange it was to watch, considering I'd never had a cannula before and he'd had plenty. Obviously, this led the midwife to question why he'd had so many and we ended up discussing his entire story from the beginning until now (which we are absolutely fine with and don't mind discussing it at all - again, the more people who know, the better). The look of shock, horror, sympathy and utter confusion on her face as we spoke reminded us how abnormal our situation appears to be. It's become our "normal" and we are used to living with it on a daily basis, and we very quickly forget what a shock it is to others who may not have experienced something like this before.

We were discussing this over lunch recently when Steve was on paternity leave. What is so unusual about the position we are in? If ever it comes up in conversation with a total stranger, they are shocked and interested to know all about it. There have even been occasions where we've met friends of friends for the first time, and as soon as either of us introduces ourselves, the person knows all about us and has lots of questions. Why? Everybody wants to know everything... How old is he? He looks far too young to have cancer... Does it run in the family? It seems so odd that this has happened to someone of his age... How was he diagnosed? Most people don't know the symptoms...

The sad thing about it is, it's not unusual at all. Cancer affects 1 in 3 of us, and although most of them are around the age you might expect cancer to become apparent, a lot of them aren't. Steve was 30 when he was diagnosed, and he isn't the youngest person I know who's had cancer.

It's easy to sometimes fall into a self-pitying state of mind and wonder, why us? But really, why not? Cancer is sadly so common now and we never stay self-pitying for long - we make sure to remind each other that we are so, so fortunate Steve is okay and even though we're still very much in the battle, we are grateful that his cancer was caught early enough that all of the treatment he's had so far has even been an option to try.

Medical advances are happening all the time but prevention is ALWAYS better than cure. It's imperative that people are made aware of the signs and symptoms, and that they speak up to their GP... If you're not satisfied with their response, keep pushing, request to see a different GP, and do not stop until all of the appropriate screening has taken place. We're lucky that Steve was referred for the right testing immediately, but I know of far too many cases where people are considered "too young to get bowel cancer" and are sent away with no testing. This DOES happen to people of all ages, and I've seen far too many families torn apart because they've been misdiagnosed or not taken seriously. It might be slightly embarrassing but it's worth it, either for your peace of mind if it's nothing sinister, or for an early diagnosis so the relevant treatment can go ahead. Don't risk your health because you're embarrassed. It's absolutely not worth it.

A quick reminder of the signs and symptoms to look out for:
- Weight loss
- Weight gain
- Bleeding from bottom and/or when going to the toilet
- Pain or a lump in tummy
- Extreme tiredness
- A change in bowel habits
These symptoms may not mean cancer, but occasionally they do so it's always worth getting checked!

I hope anyone who comes across this and has any questions or comments will contact me - GinaParker21 on Twitter - I'm always interested to hear people's perspectives and will be as helpful as I can to anyone who needs it! :)

Lots of love always 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

Another (long) update!

Hi all,

I am such a rubbish blogger... I always forget to blog!

Loads has been going on since my last posts so I'll try to remember as much as I can.

In July we hosted a cheese and wine night on a Saturday evening for some friends. We'd been wanting to do it for a while but with chemo and other things going on we hadn't got round to it. It was a really lovely night and most people (not including me!) had quite a bit to drink.

The next day, Steve was feeling really sorry for himself - obviously we put it down to having had a few drinks after a good couple of months of not drinking. He spent most of Sunday asleep, which was unlike him but I wasn't worried because again, it seemed obvious that it was due to a night involving lots of alcohol after being sober for a while. He still felt awful in the evening so we had an early night and I told him to try and sleep it off some more.

In the middle of the night, I woke up to our whole bed shaking. I sat up and realised it was Steve... He was shivering like nothing I've ever seen before but still seemed very sleepy. I was extremely worried and woke him up to check he was okay. He told me he felt freezing cold but when I turned on the light to find him an extra blanket, I saw that he was dripping with sweat. I put the extra blanket over him anyway because he said he felt so cold, but I stayed awake whilst he went back to sleep because I was too concerned to get anymore sleep myself.

On Monday morning he felt the same - still shivering and complaining that he was freezing cold, but still sweating profusely.

We called the chemotherapy ward at our local hospital where Steve had undergone all of his treatment, and asked their advice. They told us he would need to go immediately to the Cancer Centre at another local hospital; one we'd never been seen at or treated at before. They asked if we'd like an ambulance sent to get us there right away but he seemed okay at this point, so we said no and made our own way there.

On the way to the hospital, Steve deteriorated massively. I had to keep shaking his shoulder and shouting at him to try and keep him awake - he was slipping in and out of consciousness and was completely delirious and hallucinating.

I had to run and get a wheelchair when we arrived at the hospital because there's no way Steve could stand, let alone walk to the department we needed to be in.

He was hooked up to some general intravenous antibiotics and fluids to hydrate him whilst I answered lots of questions. I kept reiterating that he'd been drinking over the weekend and was desperately hoping that this was the cause of his condition, and nothing more sinister.

The doctor kept talking to Steve to see if she could ascertain what sort of state he was in, and it was apparent within a few seconds that something was seriously wrong.

They took lots of blood cultures and sent them off for testing. He was sent for an x-ray, which showed nothing we weren't already aware of.

He seemed to perk up a bit and feel slightly better throughout the day, and he was sent down to a private room on a different ward in the Cancer Centre where he would have to stay. As I was getting ready to leave, he seemed to get worse again - severe shivering/rigor and complaining he was freezing cold despite feeling extremely hot to the touch and sweating.

I called for help and within a few seconds the room filled with nurses who were pulling off his bed covers, putting pillow cases full of ice all over his body and on his head, and shouting that his temperature was at 41 degrees. Two nurses leant over me to throw open the windows. One of them hurled a fan to me and told me to plug it in and hold it on his face. I cried that I didn't want to - he was almost in tears himself at how freezing cold he felt and was begging them all to leave him alone and give his blankets back. They even took his socks off. I felt totally heartbroken that he was suffering so much and they seemed to be making it worse. Very reluctantly I sat by his side with one hand stroking his face talking gently to him, and the other hand holding the fan. I was holding back tears. By this point, he was throwing up and his face and body were bright red.

After about an hour, his temperature had dropped slightly, although it was still around 40 degrees C, and visiting hours were over. As I left to go home (still in tears and petrified), one of the nurses stopped me - seeing I was pregnant, she gave me a really sad, sympathetic look before giving me a huge hug and writing down all the different phone numbers I could call to find out his condition at any time.

I called the second I got home - he'd been sick again since I left but was improving slowly.

I cried myself to sleep, eventually drifting off through sheer exhaustion at around 1am, and I called them again when I woke at about 4am. They told me nothing much had changed overnight - they were still monitoring his temperature and still had IV fluids going. They didn't have results for the blood cultures yet so the antibiotics were still generic ones.

Tuesday wasn't quite as bad, although still very worrying and it didn't look like Steve was any closer to coming home.

They got the blood results back and told us Steve had a Staphylococcal infection in his blood. It had entered through the site where the tunnel line was positioned for chemotherapy - the line leading directly into his heart. This sort of infection can shut down the vital organs, and very quickly. I was petrified that his heart could shut down at any moment. Luckily, Steve was unaware of this so was able to stay calm and focus on resting.

The antibiotics were changed to much stronger and more targeted ones for this particular infection.

After a few more days, Steve was eventually feeling much better.

They decided not to give him his last chemotherapy session and to remove the tunnel line on Thursday, before letting him come home. This would prevent any further infection. They felt the small chance of benefit from the final chemotherapy session (it becomes less effective towards the end) was outweighed by the risk of further infection if they were to keep the tunnel line in for the remaining two weeks.

Two doctors performed a quick procedure to remove the line and we were very happy to see the back of it!

He was discharged from hospital later that day with lots of oral antibiotics to continue with to ensure the infection was completely gone.

On our way out, that same nurse who had given me a sad look and a cuddle said something neither of us will ever forget - "you had us all scared for a while there, we had crash teams at the ready outside the door of your room - it really was touch and go for you these last few days" - it sent shivers down our spines and I still feel sick thinking about it. I hadn't realised how close I'd come to losing the love of my life and I never want to feel that feeling again. We don't speak about it because it upsets us both, but this blog was always intended to be an honest account of what we're going through and the feelings we've felt, and I want it to stay that way.

I was told to continue monitoring Steve's temperature every few hours for about another week. Any sign of it heading above 37 degrees C and we were to go straight back in.

We were both really grateful to have some time off from treatment and we had a lovely rest of the summer.

We now have a 5 and a half week old beautiful little girl called Esmée! She is absolutely our world and we're besotted. She is definitely a Daddy's girl. He adores her and she looks so much like him! She's brought such an amazing joy into our lives and nothing makes me happier than seeing my husband cuddling our little girl and staring into her eyes. It melts my heart (and I have to keep deleting things from my phone to make room for photos - I already have about 600 pictures of her, mostly with her dad!).

Steve will soon be starting on a trial drug, the main aim of which is to eradicate the symptoms of cancer (pain, fatigue, nausea etc) and to build muscle mass, enabling him to better fight the disease. It also aims to prevent the cancer from spreading anywhere else in the body, keeping it contained to his lungs. Following this, it's likely he will continue with more chemotherapy and possibly other treatments.

His oncologist is really excited about this new drug so we have high hopes.

Apologies for the 5 months of quiet since my last posts, I'll try not to leave it so long next time!

Lots of love as always

Xx

Our experience - staff

I've wanted to write a post about this for a little while and didn't get round to it but I've just been prompted and wanted to write whilst it's still fresh in my mind.

I've written quite a bit about the experiences we've had with some doctors, oncologists etc regarding Steve's treatment - I've had numerous battles with lots of hospital staff due to not feeling like Steve was being taken seriously, not feeling like the side effects of treatment were being dealt with efficiently, and lack of referral for further tests where they were clearly necessary.

I stick by everything I have said with regards to these things - I still feel that he has been let down in some aspects, as have many other patients I've heard of, and I feel I've had to get more worked up than necessary on some occasions before anyone took notice and realised that I've done my research and (although not a medical professional), I sometimes know what's best for my husband.

That being said, I really wanted to write a quick note about the more positive experiences we've had too. We have genuinely had some outstanding care. The chemo nurses in general have always been lovely, caring and accommodating and it's clear they always do their best to make sure chemo runs as smoothly and comfortably as possible for all the patients.

The oncologist I mentioned a couple of posts ago had been fantastic recently too - I'm not sure if this is because I scared him with my outburst, or whether it's just coincidence, but he has shown real compassion for us since our appointment in February and always makes a point of trying to see us in person whenever possible, instead of us being assigned to any of his team.

What's prompted me to write this post today is this: we've just had a district nurse out the flush Steve's chemo lines before his penultimate session on Wednesday (I've been trained in doing this myself and have all the equipment but Steve had an appointment he had to get to today and the district nurses tend to be much quicker than me so we asked them to come this time!), and I have to say she was the loveliest lady! She was slightly late, so when she was finished, Steve had to quickly rush off to his appointment. I expected her to follow him out and leave as she had finished but she stayed and chatted with me for 25 minutes after Steve left, asking how we were both coping and if there was anything she could do for us. We're actually both coping extremely well, but the fact that she was so interested/concerned for our well-being reminded me that we're both humans, not just a patient and a carer!

So I know I'm a bit of a complainer when it comes to Steve's care sometimes, but I wanted to write a quick post just to show my appreciation for the NHS (who are amazing and who, quite frankly, we'd be screwed without) and in particular for the people who make a real difference and have made us feel like people. It will never be forgotten and we are so grateful to people like you who have the ability to make a horrendous experience that little bit easier. Thank you.

Lots of love Xx

Another (very late) update!

I've done it again! Forgotten to keep you all updated! Ooooops... Sorry.

Just a quick one this time :)

Chemo has been pretty smooth sailing so far... At Steve's 6th pre-chemo, all hyped up thinking he was going in for his final one, he was told that because it was working so well, they wanted to increase treatment from 3 months to 6 months. Given how blasé some of the doctors have been in the past, we can't and won't complain about this, but Steve felt so deflated when he learned that he was only half way through. Although it hasn't been as bad as the oxy/cape regime last time, he's been totally exhausted and feeling sick all the time. He's also getting horrible acid reflux, sleepless nights, infections in his tunnel line... The list goes on. He's somehow managed to work full time through all of this and I have to say I really admire that!

Fast forward to now, and we have two sessions left out of twelve. He's had the occasional reaction to certain medications etc but in general all has been going well. He had a second scan and they're still really happy with the progress so here's hoping it will continue to work its magic!

That's all for now, please leave a comment or tweet me @GinaParker21 if you have any questions or comments :)

Lots of love Xx