Tuesday, 8 March 2016

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

Sunday, 6 December 2015

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

Sunday, 8 November 2015

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

Monday, 19 October 2015

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

Tuesday, 15 September 2015

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

Saturday, 22 August 2015

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

Monday, 10 August 2015

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!