Actually, I haven't really felt like writing a blog with all that's been going on in the world...my problems seem a bit trivial in the scheme of things (of course it's not trivial to me)
Christmas was the best Christmas I've had for a long time. I stayed at my parents and took Tommy (my dog) with me. It was lovely to spend time with my family. I didn't worry too much about anything for a week and it was great.
Then Covid happened. I was just starting to feel better and looking forward to getting out more when I got the letter saying I was in the shielding group and the advise was not to leave the house or have any contact with anyone for 12 weeks. That sent me into a panic. I'd worked so hard to get myself fitter and I knew that staying behind the same four walls for 3 months would finish me off, mentally and physically. What would be the point? Might as well just give up and die now.
I talked to my oncologist, my sister and friends and we all came to the conclusion that staying home would do me more harm than good, so I decided to carry on taking Tommy out every day. It's easy where I live to stay away from people and as I like to go out so early I figured I wasn't putting myself or anyone else at risk.
That's what's keeps me going ... getting out in the fresh air with my dog. Some days it's a real struggle physically but it's worth it. That and talking to my sisters and Mum every day and staying in contact with friends by phone and social media. Photography is another lifeline for me and even if I only use my phone if I'm too knackered to carry my camera there's always something to see and take pictures of. Even though I'm used to living alone and like my own space I've found it hard being isolated.
I knew that Covid was going to have an impact on healthcare so I wasn't surprised when my endocrinology appointment was cancelled and that I didn't get my scan at 3 months. They told me I'd get my scan as soon as it was safe to do so. I didn't worry too much until it started getting close to 6 months since the last one. I didn't want to keep pestering the hospital but my Macmillan counsellor, who is amazing and a great support, persuaded me that it wasn't pestering them and that I should push to get it done. So much can change from scan to scan and I figured they wouldn't have said have a scan every three months if there wasn't a risk of the cancer progressing. I eventually got it a week before the 6 months was up.
The results weren't the best news but could have been worse. I really hate it when people say that to me but I'm allowed to say it to myself!
The scan showed three more lung metastases on my other lung. The good news is that the lung where I had my op is clear. My oncologist has referred me to a radiologist for something called Radiofrequency ablation (RFA). Zap the buggers! Hopefully it will get rid of them or at least keep them at bay.
The radiologist rang me and explained everything. It's much less invasive than surgery and causes little damage or side effects. He's confident he can treat them.
The only thing is he's got a backlog of patients due to Coronavirus so I've got to wait 6 to 8 weeks. He's put me somewhere in the middle of his list. He thinks that the rate which they are growing is quite slow so I should be ok to wait that long. I hope he's right because if not I'm buggered as once they get past a certain size they can't do it and the only treatment will be chemo for life. So I'm now waiting for a date.
I wasn't really surprised that the scan showed more metastasis. It was inevitable really. I know what I've got isn't cureable.
I'm trying not to think too deeply about it or too far ahead. I need to focus on the now and right now they can do something which could prolong my life for weeks, months ...maybe even years.
Coronavirus is obviously something that could kill me if I got it but cancer is definitely going to kill me eventually so I'm not going to get bogged down with it. I'm being sensible but I'm not being a prisoner in my own home and I'm not following the shielding guidelines that say I can only go out and meet with one other person. I won't go shopping or anywhere busy but I've had my sister and close friends round in my garden and I've met friends outside at a distance. It's up to me to keep myself safe and I am doing just that.
Sometimes I feel a bit useless and not sure what I actually contribute to this world but right now I'm just trying to get through each day the best I can and hope I get the treatment I need as soon a possible.
I'm writing a blog now though for my own benefit. I feel I need to process what's been going on and get up to date.
Christmas was the best Christmas I've had for a long time. I stayed at my parents and took Tommy (my dog) with me. It was lovely to spend time with my family. I didn't worry too much about anything for a week and it was great.
I'm not sure how but I ended up with a new oncologist in Ipswich. I really like him. He's much more positive and doesn't get the hump when I ask non stop questions. When we got my pet scan results it was decided that surgery was going to be the best option for the largest lung spot. He didn't faff about ... "you're young, lets get rid of it" he said. So in February I had a lung resection at the Cardiothoracic Centre in Basildon. They had to take the bottom half of my left lung away by something called VATS lobectomy (video assisted thoracic surgery). It is truly amazing what surgeons can do.
So, another bit of my body cut out and another scar to remind me. I thought the surgery would be a lot easier than my last op to remove the bowel and ovarian tumours but it turned out to be equally as horrendous as I developed something called a pleural effusion and ended up in back in hospital. Not being able to breathe properly is one of the most frightening things I've ever experienced. Makes the thought of Coronavirus even more worrying.
I got through it though and all things considered I feel reasonably good now.
I'm "lucky" I had it done when I did because any later and it would definitely have been cancelled due to the Coronavirus pandemic.
Maybe lucky isn't the best word to use when talking about cancer ... there's nothing lucky about any of it. Fortunate is probably a better word. Fortunate I got my op just in time.
I do consider myself lucky to have such good support from friends and family though. I couldn't have got through it without all the help I had. I'll never forget what people have done for me and I'm so grateful. Walking my dog, gardening, shopping, collecting my prescriptions, positive messages ... people are amazing.
My son stayed with me for a couple of weeks after my op, which he did the last time too. Having him with me was so nice as we don't get to spend as much time together as we'd like and having him there definitely speeded up my recovery. The worst thing was my back. It doesn't take long to lose mobility. I could hardly walk without pain and losing the feelings in my legs and was still getting a bit breathless when my son had to go, so I asked for help and had a whole army of friends turned out. Every day for nearly 3 weeks I had someone with me to help walk Tommy. I'm a great believer in the saying " if you don't use it you lose it" and I'm 100% sure keeping active has helped me get past the two year mark with this shitty disease.
When they did the biopsy from the lung it was confirmed that it was a metastasis ... the bowel cancer has definitely spread to my lungs.
It was all quite positive though ...they completely removed it and apart from an annoying cough and slight breathlessness I don't have any major problems from it. We discussed chemo again and even though some oncologists recommend it after surgery mine didn't. The only way I would ever consider chemo is if it will do me more good than harm. I'm trying not to think about that yet but I will at have to some point. The plan was to have a post surgery scan and then one every three months.
So, another bit of my body cut out and another scar to remind me. I thought the surgery would be a lot easier than my last op to remove the bowel and ovarian tumours but it turned out to be equally as horrendous as I developed something called a pleural effusion and ended up in back in hospital. Not being able to breathe properly is one of the most frightening things I've ever experienced. Makes the thought of Coronavirus even more worrying.
I got through it though and all things considered I feel reasonably good now.
I'm "lucky" I had it done when I did because any later and it would definitely have been cancelled due to the Coronavirus pandemic.
Maybe lucky isn't the best word to use when talking about cancer ... there's nothing lucky about any of it. Fortunate is probably a better word. Fortunate I got my op just in time.
I do consider myself lucky to have such good support from friends and family though. I couldn't have got through it without all the help I had. I'll never forget what people have done for me and I'm so grateful. Walking my dog, gardening, shopping, collecting my prescriptions, positive messages ... people are amazing.
My son stayed with me for a couple of weeks after my op, which he did the last time too. Having him with me was so nice as we don't get to spend as much time together as we'd like and having him there definitely speeded up my recovery. The worst thing was my back. It doesn't take long to lose mobility. I could hardly walk without pain and losing the feelings in my legs and was still getting a bit breathless when my son had to go, so I asked for help and had a whole army of friends turned out. Every day for nearly 3 weeks I had someone with me to help walk Tommy. I'm a great believer in the saying " if you don't use it you lose it" and I'm 100% sure keeping active has helped me get past the two year mark with this shitty disease.
When they did the biopsy from the lung it was confirmed that it was a metastasis ... the bowel cancer has definitely spread to my lungs.
It was all quite positive though ...they completely removed it and apart from an annoying cough and slight breathlessness I don't have any major problems from it. We discussed chemo again and even though some oncologists recommend it after surgery mine didn't. The only way I would ever consider chemo is if it will do me more good than harm. I'm trying not to think about that yet but I will at have to some point. The plan was to have a post surgery scan and then one every three months.
Then Covid happened. I was just starting to feel better and looking forward to getting out more when I got the letter saying I was in the shielding group and the advise was not to leave the house or have any contact with anyone for 12 weeks. That sent me into a panic. I'd worked so hard to get myself fitter and I knew that staying behind the same four walls for 3 months would finish me off, mentally and physically. What would be the point? Might as well just give up and die now.
I talked to my oncologist, my sister and friends and we all came to the conclusion that staying home would do me more harm than good, so I decided to carry on taking Tommy out every day. It's easy where I live to stay away from people and as I like to go out so early I figured I wasn't putting myself or anyone else at risk.
That's what's keeps me going ... getting out in the fresh air with my dog. Some days it's a real struggle physically but it's worth it. That and talking to my sisters and Mum every day and staying in contact with friends by phone and social media. Photography is another lifeline for me and even if I only use my phone if I'm too knackered to carry my camera there's always something to see and take pictures of. Even though I'm used to living alone and like my own space I've found it hard being isolated.
I knew that Covid was going to have an impact on healthcare so I wasn't surprised when my endocrinology appointment was cancelled and that I didn't get my scan at 3 months. They told me I'd get my scan as soon as it was safe to do so. I didn't worry too much until it started getting close to 6 months since the last one. I didn't want to keep pestering the hospital but my Macmillan counsellor, who is amazing and a great support, persuaded me that it wasn't pestering them and that I should push to get it done. So much can change from scan to scan and I figured they wouldn't have said have a scan every three months if there wasn't a risk of the cancer progressing. I eventually got it a week before the 6 months was up.
The results weren't the best news but could have been worse. I really hate it when people say that to me but I'm allowed to say it to myself!
The scan showed three more lung metastases on my other lung. The good news is that the lung where I had my op is clear. My oncologist has referred me to a radiologist for something called Radiofrequency ablation (RFA). Zap the buggers! Hopefully it will get rid of them or at least keep them at bay.
The radiologist rang me and explained everything. It's much less invasive than surgery and causes little damage or side effects. He's confident he can treat them.
The only thing is he's got a backlog of patients due to Coronavirus so I've got to wait 6 to 8 weeks. He's put me somewhere in the middle of his list. He thinks that the rate which they are growing is quite slow so I should be ok to wait that long. I hope he's right because if not I'm buggered as once they get past a certain size they can't do it and the only treatment will be chemo for life. So I'm now waiting for a date.
I wasn't really surprised that the scan showed more metastasis. It was inevitable really. I know what I've got isn't cureable.
I'm trying not to think too deeply about it or too far ahead. I need to focus on the now and right now they can do something which could prolong my life for weeks, months ...maybe even years.
Coronavirus is obviously something that could kill me if I got it but cancer is definitely going to kill me eventually so I'm not going to get bogged down with it. I'm being sensible but I'm not being a prisoner in my own home and I'm not following the shielding guidelines that say I can only go out and meet with one other person. I won't go shopping or anywhere busy but I've had my sister and close friends round in my garden and I've met friends outside at a distance. It's up to me to keep myself safe and I am doing just that.
Sometimes I feel a bit useless and not sure what I actually contribute to this world but right now I'm just trying to get through each day the best I can and hope I get the treatment I need as soon a possible.
* The picture I've posted was taken just after lockdown and made me realise how lucky I am to live where I do and have my dog and to be able to get out every day.
