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
Monday, 19 October 2015
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
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
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.
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!
We are so grateful for all of the donations and support and we can't wait to get involved in more fundraisers!
Sunday, 9 August 2015
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
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
Wednesday, 8 July 2015
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
Thursday, 25 June 2015
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.
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
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
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