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
Wednesday 31 December 2014
Tuesday 9 December 2014
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
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
Friday 21 November 2014
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
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
Thursday 20 November 2014
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.
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...
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!
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
Friday 14 November 2014
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
Wednesday 12 November 2014
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
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
Friday 27 June 2014
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
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
Thursday 26 June 2014
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
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
Sunday 30 March 2014
Update...
I need to start by apologising for not writing for such a long time, and for leaving my blog on an uncertain note.
I'm going to pick up where I left off, but it's been a while and a LOT has happened so bear with me!
Steve's lung surgery was a huge success. I went to the hospital with his mum once we got the call to say he was back on the ward, and the difference in him compared to how he was after his last operation was unbelievable and a welcome relief. He was sitting up in bed, with his oxygen mask still on but a huge smile as soon as he saw us. He kept telling me how much he loved me and that all he thought about on the evening before surgery, and on the morning as he was being wheeled down, was seeing my in my wedding dress in 7 weeks time. He was full of all sorts of drugs but was so happy and upbeat.
Two nights later, he was allowed to come home. He recovered very quickly, as luckily the surgeon managed to use keyhole surgery to remove the tumour.
We had 7 lovely weeks leading up to our wedding, and had the most beautiful day imaginable. I'm still on cloud nine when I think about it, despite other things that have happened since.
Steve started to get severe chest pains and a "bubbling" sensation in his left lung around October time, and went to his GP. His GP listened with a stethoscope before promising Steve that if the cancer had returned, he would have been able to hear a blockage when listening, which he didn't hear. He sent Steve away with all the confidence in the world and no referral for further tests.
About a month later, Steve went back with the same pains, but worse. Again, the same GP told him there was definitely no problem and reassured him that the next routine scan would confirm this.
Steve had his next CT scan and we were petrified for results. However, when we saw the oncologist, he said there were two tiny specks on Steve's lung which he believed 99% were scar tissue from surgery. He arranged a PET scan to be sure, but filled us with confidence and told us he truly believed there was no reason for concern. He told us that if the two specks did turn out to be cancer, they would be easily treated with radio-frequency ablation (RFA) and that no further treatment would be required. He also said the pains Steve had would not be cancer related, even if the specks were cancer, because the specks were so minor.
We left feeling extremely positive - the fact that the GP and now the oncologist seemed so confident, especially following a scan, was really reassuring.
However, the PET scan took place and when we walked into the oncologist's office for results, I instantly knew there was something wrong.
When the oncologist asked how Steve had been, and Steve mentioned his chest pains, the oncologist delved a lot deeper and asked lots of questions about where the pains started and finished how often they occurred etc. I got fed up with all the questions - it was obvious something was wrong.
The oncologist explained that the PET scan had highlighted some activity which hadn't been picked up on in the CT scan. The specks were cancerous, but there was more than two. He didn't specify and we didn't ask - he just said "a few".
Steve sat shell shocked, in silence, and I got defensive and went into my usual robot survival mode. I asked what this meant with regards to treatment. I asked if RFA was still going to take place. He told me that ablation was no longer the best option. He said they were thinking of chemotherapy, and that they were thinking maybe a couple of weeks, and they were thinking bla bla bla. Why all the thinking and no doing?! It's an extremely rare occurrence, but I don't mind admitting that I totally lost the plot in the oncologist's office and my voice may have got a little bit louder and angrier than what people are used to. I'm not sure who was more shocked, Steve or the oncologist but I didn't care. This was my family. I told him that if chemotherapy was happening, it needed to happen IMMEDIATELY and that we wouldn't wait any more. I told him that given the damning CQC report on the hospital, I'd have thought this would be obvious. I asked him to look at me and tell me he was genuinely surprised the cancer was progressing given that Steve had to wait two months before each operation. I was greeted with silence, followed by "would you like me to call oncology now and send you down there right away to make an appointment for chemotherapy to start?" My response? "No thank you, because that's not my job, it's yours. Why hasn't it already been booked? You prepared us for amazing news today and now you tell us this, and you haven't even arranged treatment. We're going home, you can book chemo for this week and you can call me and let me know when we need to be here".
10 minutes after arriving home we got a call from oncology explaining that we had to go back the next day for a tunnel line to be fitted into Steve's chest so they could administer chemo this way. Chemo would be the following day, followed by a biopsy of the cancer the next day.
Steve started on Irrinotecan and 5FU, with Avastin, and after three of the six treatments, he had a CT scan to check the progress. He said after his second treatment that the pains and disappeared and that he really felt like it was working. HE WAS RIGHT. The results were amazing - the plan had been to use RFA on any remaining cancer once chemo was over, but he was told during pre-chemo before treatment number 4 that the chemo was working unbelievably well and that they don't even think RFA will be necessary because of how well he is responding. They are confident that the cancer will be gone by the end of chemo, and will do a scan to confirm. If not, they are still happy for RFA treatment to go ahead.
We are absolutely over the moon and are finally feeling confident after the first good scan results in almost 2 years.
That just about brings you up to date... I promise to not leave it so long next time!
Love love love xxxxxx
I'm going to pick up where I left off, but it's been a while and a LOT has happened so bear with me!
Steve's lung surgery was a huge success. I went to the hospital with his mum once we got the call to say he was back on the ward, and the difference in him compared to how he was after his last operation was unbelievable and a welcome relief. He was sitting up in bed, with his oxygen mask still on but a huge smile as soon as he saw us. He kept telling me how much he loved me and that all he thought about on the evening before surgery, and on the morning as he was being wheeled down, was seeing my in my wedding dress in 7 weeks time. He was full of all sorts of drugs but was so happy and upbeat.
Two nights later, he was allowed to come home. He recovered very quickly, as luckily the surgeon managed to use keyhole surgery to remove the tumour.
We had 7 lovely weeks leading up to our wedding, and had the most beautiful day imaginable. I'm still on cloud nine when I think about it, despite other things that have happened since.
Steve started to get severe chest pains and a "bubbling" sensation in his left lung around October time, and went to his GP. His GP listened with a stethoscope before promising Steve that if the cancer had returned, he would have been able to hear a blockage when listening, which he didn't hear. He sent Steve away with all the confidence in the world and no referral for further tests.
About a month later, Steve went back with the same pains, but worse. Again, the same GP told him there was definitely no problem and reassured him that the next routine scan would confirm this.
Steve had his next CT scan and we were petrified for results. However, when we saw the oncologist, he said there were two tiny specks on Steve's lung which he believed 99% were scar tissue from surgery. He arranged a PET scan to be sure, but filled us with confidence and told us he truly believed there was no reason for concern. He told us that if the two specks did turn out to be cancer, they would be easily treated with radio-frequency ablation (RFA) and that no further treatment would be required. He also said the pains Steve had would not be cancer related, even if the specks were cancer, because the specks were so minor.
We left feeling extremely positive - the fact that the GP and now the oncologist seemed so confident, especially following a scan, was really reassuring.
However, the PET scan took place and when we walked into the oncologist's office for results, I instantly knew there was something wrong.
When the oncologist asked how Steve had been, and Steve mentioned his chest pains, the oncologist delved a lot deeper and asked lots of questions about where the pains started and finished how often they occurred etc. I got fed up with all the questions - it was obvious something was wrong.
The oncologist explained that the PET scan had highlighted some activity which hadn't been picked up on in the CT scan. The specks were cancerous, but there was more than two. He didn't specify and we didn't ask - he just said "a few".
Steve sat shell shocked, in silence, and I got defensive and went into my usual robot survival mode. I asked what this meant with regards to treatment. I asked if RFA was still going to take place. He told me that ablation was no longer the best option. He said they were thinking of chemotherapy, and that they were thinking maybe a couple of weeks, and they were thinking bla bla bla. Why all the thinking and no doing?! It's an extremely rare occurrence, but I don't mind admitting that I totally lost the plot in the oncologist's office and my voice may have got a little bit louder and angrier than what people are used to. I'm not sure who was more shocked, Steve or the oncologist but I didn't care. This was my family. I told him that if chemotherapy was happening, it needed to happen IMMEDIATELY and that we wouldn't wait any more. I told him that given the damning CQC report on the hospital, I'd have thought this would be obvious. I asked him to look at me and tell me he was genuinely surprised the cancer was progressing given that Steve had to wait two months before each operation. I was greeted with silence, followed by "would you like me to call oncology now and send you down there right away to make an appointment for chemotherapy to start?" My response? "No thank you, because that's not my job, it's yours. Why hasn't it already been booked? You prepared us for amazing news today and now you tell us this, and you haven't even arranged treatment. We're going home, you can book chemo for this week and you can call me and let me know when we need to be here".
10 minutes after arriving home we got a call from oncology explaining that we had to go back the next day for a tunnel line to be fitted into Steve's chest so they could administer chemo this way. Chemo would be the following day, followed by a biopsy of the cancer the next day.
Steve started on Irrinotecan and 5FU, with Avastin, and after three of the six treatments, he had a CT scan to check the progress. He said after his second treatment that the pains and disappeared and that he really felt like it was working. HE WAS RIGHT. The results were amazing - the plan had been to use RFA on any remaining cancer once chemo was over, but he was told during pre-chemo before treatment number 4 that the chemo was working unbelievably well and that they don't even think RFA will be necessary because of how well he is responding. They are confident that the cancer will be gone by the end of chemo, and will do a scan to confirm. If not, they are still happy for RFA treatment to go ahead.
We are absolutely over the moon and are finally feeling confident after the first good scan results in almost 2 years.
That just about brings you up to date... I promise to not leave it so long next time!
Love love love xxxxxx
Subscribe to:
Posts (Atom)