Wednesday, 14 August 2019

Treatable not Cureable

So much has gone on over the last couple of months I almost forgot about having cancer ... no, that's a lie. It's something that's always in the back of my mind in varying degrees.
After all the weeks of being in limbo I finally got to see my oncologist. I wasn't surprised by what he told me. So there's no question that I have secondary cancer in my lungs. From all the scans I've had they can say it's definitely not lung cancer and its definitely not "nothing". It's the bowel cancer spread to my lungs and it's not going to go away. He said not cureable but definitely treatable. The positive in all this is that it's only 2 small spots which so far have grown slowly and there's no evidence of spread anywhere else. I don't have any lung symptoms either. The treatment for lung metastasis is chemotherapy. Chemotherapy won't cure me. It's used to shrink any tumours and keep the cancer at bay. I don't see any point in having it at the moment and neither does my oncologist. There's not much point in putting my body through something so harsh when it's not going to cure me or make any improvement to my quality of life. It could shrink the tiny spots so they don't show on the scan but they'll still be there. I feel ok at the moment so I'm staying as I am.  I'll be on active surveillance with scans every three months. There's no telling how it will progress or at what pace but so far I've managed 14 months since my surgery ...which in the scheme of things is pretty good going. I already beat the statistics for bowel cancer with krukenberg tumour. 
I don't really know how I feel about it at the moment. I'm not about to die tomorrow that's for sure. Right now things are stable. I know people who have been having treatment to keep their cancer at bay ...some for a few months, some for years. It's a very individual thing. There's always the small chance that if nothing else pops up I could have surgery on my lungs and treatments are advancing all the time.
I just have to carry on and make the most of things right now ... live for today, carry on as normal.... which means doing what I can, when I can and while I still can. Yes it's shit ... really shit and really frightening but I've got amazing support.
I've spoken to people about it because I've needed to but I don't want my whole life to revolve around the fact I've got stage 4 bowel cancer. I need to be realistic and optimistic but I don't want to go on about it non stop ...which is why I've written this blog. I need other people to be realistic too. So... please don't tell me I can cure myself by eating X, Y or Z. Yes, there are plenty of things I can try to do to help myself but no, there isn't a conspiracy around a cancer cure.  Please don't tell me not to be stupid when I say it will eventually kill me and please don't tell me you could get run over by a bus tomorrow!  You could ... but most likely not and the thought of dying from being run over by a bus isn't going to be hanging over you every day. 
Losing my little dog Libby had a far worse impact on me than any of the cancer stuff. She was what kept me going on a day to day basis. No, my entire life didn't revolve around her, I have friends, a great hobby, amazing family but she was always there at the end of the day when everyone else goes back to getting on with their own lives. She was my reason to carry on through all the shit because she needed me.
I've now got another dog, Tommy. He's given me a purpose again. I've only had him for a couple of weeks and I've done nothing but worry if it's selfish or not to have him here when I don't know how long I'll be able to look after him. The truth is if I didn't have him he'd still be stuck in kennels. No one can predict the future. Realistically I doubt I'll live to be 70 but I'm alive now and I've got so much to give. Tommy and I have been good for each other already. 

Sunday, 30 June 2019

Limbo Land

Of course it's fantastic news to hear the words stable disease. So how come I'm feeling more anxious than ever?
I just had my latest scan results and apart from being told "you're cured", which isn't going to happen any time soon, it was a great outcome. The suspicious lung nodule that grew at the last 2 scans has grown but only by a few millimeters, so is classed as stable disease. There's always a slight discrepancy in measurements apparently. There's a tiny 2.5 mm nodule on my other lung which they say isn't a concern. There's no evidence of disease anywhere else which is amazing and a huge relief. So really I should be jumping through hoops ! It's mostly good news.
Don't get me wrong I was so relieved. I'd worked myself up into such a state over the last few weeks imagining every worst case scenario possible, so the fact that nothing has really changed is a miracle.
I don't know, maybe it's an accumulation of 18 months of uncertainty and all the other health and personal things going on. It just seems to be an endless cycle of don't knows ! It still is. Nothing ever gets resolved. I go to these appointments and I think I understand what's going on then I get a copy of the report and I get confused again.
In the meeting we talked about chemotherapy and the fact that it would be palliative not curative and would be to shrink a tumour and alleviate symptoms. Well as I don't have any lung symptoms and the lung nodule is small, and they still can't 100% confirm what it is, it wouldn't really be doing anything apart from making me ill. Then when I get the letter it says Mrs Browning is not keen on having any chemotherapy at the moment, as if I've just decided off my own bat. So then I start worrying about that.
Maybe I'm analysing everything too much. I can't help it, it's what I do !
Honestly this week has been shit and I daren't say anything because everyone thinks I should be thankful it wasn't really bad news. I feel guilty if I say well actually I'm not over the moon about it all. I should just forget about it and get on with life. Well I am trying but what I really wanted was for them to say no evidence of disease anywhere. Probably only people who have or have had cancer will know what I mean.
Anyway, I'm having my thyroid levels tested again tomorrow to see if the Graves Disease is under control enough to be able to have my back op.
I know I'm pretty depressed at the moment. Having my back op cancelled again really set me back and Graves disease is shit too. It's one of those things most people haven't even heard of but it just makes you feel awful.
I am trying to do things but it's hard. In my head I want to do so much but I'm just too knackered. Some days I take Libby out first thing and that's it ... I'm done for the day. When I do end up doing something I usually get carried away and end up paying for it for the next few days. I've had some really great times out with friends over the last few weeks so at least if I feel ill it's not for nothing. I couldn't stand to be stuck in 24/7. I'd rather go for a walk in pain than sit on my backside all day!
When I talk to people about it I'm so sensible and rational. In my head I'm thinking the opposite. I hate the thought of people thinking I'm always complaining or feeling sorry for myself so I try not to say too much. I wish I could listen to my own advice.
Anyway I've got an appointment with the oncologist coming up to discuss what next so hopefully things will be a bit clearer..probably not. I'm guessing it'll be wait until the next scan to see if anything changes. I feel like I'm living in Limbo Land, just waiting for the next thing to crop up.
I'm moaning again I know. It's hard to shake off the negative thoughts at the moment.
Maybe I should blame Brexit or the weather ... I know I'll be ok because I've still got a sense of humour through the tears and I've got a whole host of amazing people keeping me from completely losing it !

Sunday, 5 May 2019

Woe Is Me !

It's been weeks since my last blog. I was hoping the next blog I wrote was going to be full of positives and good news. Wishful thinking. I'm so fed up right now and unmotivated, even though I'm trying my hardest not to be. Maybe I'm feeling sorry for myself, which isn't the best of moods but sometimes it all gets to me. Sometimes I just wonder what the fuck have I done to deserve all the crap life keeps throwing my way.
So, this week, over a year after being told I needed it, I should have had my spinal surgery. I can't say I was looking forward to more major surgery but I'd psyched myself up for it and was looking forward to getting fitter and hopefully being pain free. I was hoping to get at least one health problem sorted and get back to some sort of normality. I don't think I'm ever going to get back to normality. I can't even remember what that means. Maybe there's no such thing.
Instead my surgery was cancelled the day before. Cancelled due to my thyroid levels being too high, making it too dangerous to go under anaesthetic. I have Graves disease which is an overactive thyroid. It's  been in remission for months but has now come back with a vengeance. I don't know why. They say stress can trigger it. It's not been the easiest of times so stress is unavoidable really. Graves disease is a bastard and can cause all sorts of problems. I've gone back on medication, which I hate but can't avoid. It's not working very quickly. My back operation is on hold until the Graves is under control. I've no idea how long that will take.
I'd been feeling ok. I never feel 100% but I was alright. I have a high pain threshold and I've sort of got used to illness. Everyone keeps telling me I look well ! Obviously they're not here first thing in the morning before hair and makeup!
I had a feeling something wasn't quite right a few weeks ago but it's hard when you have so many things wrong to know what symptoms belong to what.
Is it the Bipolar? Is it the Graves? Is it the Cancer? Is it to do with my spine? Is it my heart? Is it nothing and I'm being a hypochondriac? Do I ignore it or do I tell someone? It all seems to mingle into one. 

My mood is all over the place, I feel ridiculously tired, my skin is dry and itchy and my hair ... it's like straw! I can cope with all sorts but my hair is really getting to me which may seem shallow but I cant help it. Basically I feel a wreck. I'm seeing the Endocrinologist next week so hopefully he can work out what to do. 
What I'm really worried about is that I've missed the window of opportunity to get my back done. I'm worried that when I have my next Colonoscopy and CT scan at the end of this month, something will show up and it will be too late. I can't seem to get out of this negative thinking. I'm worried that the Graves has flared up because of the cancer. I'm getting on my own nerves at the moment.... I just seem to be moaning !
I try to get out and do things but some days lately it's all too much like hard work. I'm tired and I've lost my enthusiasm. I plan something then I haven't got the oomph to do it. Even taking Libby out is a chore. I used to take my camera everywhere and I've even lost my enthusiasm with that. I try not to bang on about it and bring other people down. I try to carry on smiling and making jokes. Sometimes that works and for a while everything seems ok.

I wrote all that last night and I've just read it back ...what a miserable  cow! I need to turn it around and think of some positives.
Of course there are plenty of positives. 
It's not all been doom and gloom over the last few weeks.
 My son was staying to look after Libby and be here to help after my op, so he stayed anyway for a few days, which was really lovely as we don't get that much time together. 
I've had some great days out with friends.
I went to my granddaughter's birthday party.
I still manage to get out every day with my dog Libby.
I still have my parents and even though I don't get to see them as much as I'd like I can speak to them whenever I want.
I've got so many friends and my sisters helping me out. I know that I've got people I can call on if I need help.
For some Facebook is superficial but it's been a lifeline for me and I've connected with some amazing people. 
I've made some really good friends through Facebook. 
 There's so much that's good, sometimes I have to take a step back and put things into perspective. I have so much support I really should be grateful .. and I am. 

On 14th May it will be one year since I was told I definitely had cancer. Some people call milestones like that a Cancerversary! So I really should be celebrating that I'm still here instead of sitting here moaning ! 

Sunday, 10 March 2019

Living With Cancer

It's been a really hard couple of weeks. At the moment I feel like my head is about to explode. I'm finding it hard to concentrate on anything so I'm hoping writing it down will help organise my mind a bit.
Someone wrote a comment on my last blog post. She said "you're not dying of cancer you're living with cancer".
That really resonated with me and I've tried to keep that in my mind.  How things are at the moment, no one, not even the consultants can predict how things will pan out. Until I'm told "you're cured" or "sorry there's nothing we can do" ...then I am living with cancer and I have to get used to it and try not to think too far ahead.

I had my appointment last week with the thoracic surgeon. He said the lung nodule is most likely a metastasis from the colon cancer but there is a possibility it could be lung cancer. That would be bad luck having two separate cancers. They can't biopsy it so won't know until its removed.
He said he could remove it now if I wanted but that because of the position of it he'd have to remove half my lung and it would be major surgery because he can't get to it without opening me right up.
He couldn't guarantee that it would be curative as he said there is a chance that there are more spots that can't be seen on scans at the moment. I'd lose 25% of my lung capacity through surgery and then if more spots did appear it might be more difficult to treat. He didn't think radiation is an option because that could damage the nerves because of where it is.
He suggested that chemotherapy might be a better treatment option but I'd have to discuss that with the oncologist.
The other option is to leave it for now and watch it closely. He said it could take months for it to grow to a size where it causes symptoms and that I could have the surgery at any time and it would be the same outcome whatever size it is.
He suggested that as my spinal stenosis is the thing that's causing me the most problems now, that I have that surgery asap and once I've recovered from that look at the options again. Basically he couldn't predict the outcome but it's not likely to go away and I will have to have treatment at some point but it doesn't have to be done right now. I think they want to make sure there isn't any cancer lurking anywhere else.
I've decided there's no point in having major lung surgery if there's no guarantee it's going to cure me. I'll be monitored by the colorectal and lung multidisciplinary teams and have regular scans. Who knows really but I'm going to go with my gut feeling and get my back done.
I had an appointment with the Orthopaedic surgeon this week and he's given the go ahead. I have my operation on 5th April. I've been waiting for over a year for this and while the thought of more major surgery is daunting I'm hoping it will give me a new lease of life. I've lost my motivation for just about everything lately. I try to get out and do things but its hard work and exhausting. If I can be pain free and get fitter, I'm sure it will make anything else I might have to deal with much easier.

I did get backlash from my last blog. I had messages accusing me of enjoying playing the victim, telling me how I've ruined people's lives, asking me to "prove" I'm not lying. I've had people trying to make me feel guilty. I've had it all really. It's been horrible. I've had to block certain people and I've deleted everything to do with him but it's virtually impossible to get him out of my mind and I feel like I have a huge gap in my life. I don't get any joy in conflict. When I get upset I have to remind myself of all the lies. I guess it will get easier with time. I need to concentrate on myself now.

So, even though it's been a tough time and I've still got a lot to face, there are some real positives.....I'm definitely not about to peg it any day soon. So "living" is what I'm doing !

Saturday, 23 February 2019

Playing the Cancer Card?

I got sent a text message this week ...

"You can't go around fucking people and playing the cancer card"

I can't say I'd heard that phrase before. Cancer card... what does it even mean? Cancer isn't a fucking game. Sorry for swearing but I'm angry. I feel mortified to be honest, really upset and hurt and I can't get that phrase out of my head. I looked it up ... from what I read I think it means using a cancer diagnosis as a way to get what you want. I don't know.
Yes, I write my blog, which I've been doing for the last 6 years, way before I had cancer. It's not in your face, it's easy to scroll past, no one has to read it unless they choose to click on the link.
No I don't hide the fact I have cancer but I don't go on about it non stop. I write my blog as a way to cope with it all. I talk to people about it when they ask me but I try not to drag other people down with my problems. I've never consciously used having cancer as a way to get what I want.
I like to think that the people in my life are there because they want to be, not because they feel sorry for me. I like to think my friends are my friends because they actually like me, not because I have cancer.
I've always felt very strongly that having any illness, no matter how awful, doesn't give people an excuse to be an asshole.
Sometimes it might be the reason why I may act out of character but I'm still the same person and I've never used any of my illnesses as an excuse for anything I do.

So I've fallen out with someone who I thought was going to be in my life until the day I die. Someone who told me he'd never loved anyone as much as he loved me, who promised he'd always be there, who said I was his best friend and that he wanted me in his life forever.
For the best part of the last three years this person was a huge part of my life. We had a rocky start, mostly because of his behaviour, but I was taken in by him and somehow we always ended up drawn together. I fell in love with him. When I was recovering from my surgery he made so many promises about the future. He made me believe he was going to be by my side no matter what. We made plans for the future and things were looking up. Then out of the blue he told me he'd met someone else. He said he thought she could give him the family life he wanted. Something I'd never be able to do.  I gave him my blessing because I knew I couldn't compete. How could I when I don't even know what my future is? He made me feel guilty that I couldn't give him all those things yet wouldn't let me go. Every time I tried to break away he told me he didn't want to lose me. He kept our relationship alive by continuing to message me, call me and come and see me. He stayed involved. He shared my bed and he did just enough to make me believe that I was the one he really loved.  I'm not saying I never got upset. Maybe there were times when I was needy. Yes there were times when I cried and said I was scared and I didn't want him to leave me. There were times when I was distaught about my situation. I'm not going to apologise for that. I'm a human being and of course I opened up to him. That's not playing the cancer card is it? How can sharing my feelings about cancer and dying with someone who was supposed to be my friend and love me be wrong?  He knew I was vulnerable and he manipulated the situation. I was too stupid to realise it at the time.
After months of being in the shadows, I told him I'd had enough. I told him I wanted him to decide what he really wanted. I told him I didn't want to be second best. I wanted to make the most of life. I told him that all I had to give him was myself.  He told me he loved us both. Yes, I did get angry and say if he didn't make his mind up I'd tell his girlfriend. I told him I wanted to be more than just friends or a secret lover. I told him if it wasn't me he really wanted then just walk away .... leave me alone .... stay out of my life for good. He could have left, but no, he cried and cried and said he wanted me in his life. When he ended up in my bed yet again, making more promises, saying he couldnt resist me, when he looked me in the eye and told me he'd always love me, I believed every word. What an idiot I am.

In the end I did tell her. It was just going on and on, round in circles. I felt bad for her but really I was probably doing her a favour. He would have continued to make my life a misery and continued lying to her. I don't know what he thought would happen if things just carried on as they were. Maybe he thought eventually I'd just die and save him the bother. That's a horrible thought and probably a bit harsh but that's how he's made me feel.

He's now telling people that everything he ever did and said was because he felt sorry for me because I'm dying of cancer. Really? All those months and all those things he did and said were lies ? Everything was because he felt sorry for me?  What sort of person would do something like that?  He told his girlfriend he only had sex with me to pacify me and to stop me telling her. He told her I'd bribed him to have sex! I really can't get my head round that. Whatever way I look at it its a shit thing to do. He must have been a bloody good actor to manage that. He must have been a bloody good actor to carry on making out he cared for the last seven months. No I don't buy that at all. He told her that to try and justify the fact that he was cheating on her for their entire relationship.  That's just vile. What a coward. 

I'm struggling to comprehend how someone I was so close to and trusted could actually be so cruel.
I'm struggling to make sense of it all at the moment. I don't know how I'm supposed to act. I'm not perfect and maybe it was wrong to keep seeing him when I knew he was seeing someone else but it wasn't my responsibility to stop him cheating was it? I've gone over and over it in my head. What did I do wrong? Was I selfish wanting him to be with me when I've got nothing but problems? Did I read it all wrong? No ... I didn't do anything wrong apart from love someone who isn't worth it.
He knew  exactly what I wanted and how I felt because I've always been 100% honest.  He treated me like shit, he treated his girlfriend like shit and really he doesn't deserve either of us. 
I don't think he really truly loved either of us. He kept me in his life in case it all went wrong with her because he doesn't want to be alone. He thought she was his meal ticket out of his disastrous life. He wanted his cake and eat it too. I don't know if she'll forgive him. I can't. 

Playing the cancer card? No ...He's using my cancer as an excuse for his disgusting behaviour and that's even worse. That's got to be the lowest, most selfish thing anyone can do to another person. He's despicable. He's a cunt ...and I never use that word normally, I hate it but I can't think of any other word for him.
I feel devastated.  I doubt I'll ever speak to him or ever see him again. I wish I could hate him but I don't. I don't hate anyone. I actually feel sorry for him. I don't know how he can sleep at night. One day I hope he realises that you can't treat people the way he does. I doubt it though. He's too selfish. 
I'm not sure how I'm ever going to get over all this but I have to. 

So I've got four days to go before I see the Thoracic Surgeon in London to find out if he can do anything about the cancer that's spread to my lung. I'm trying to be positive about it. I'm trying to hold it all together.
The trouble now is that when I'm really down about it I'm too scared to say anything to anyone in case it's seen as playing the cancer card. I want to cry and sob and say I'm petrified but I won't. I'll do what I usually do. I'll smile and say I'm fine and get on with it.
  I have to believe that all the people in my life right now are there because they want to be. I consider myself to be one of the luckiest people alive to be surrounded by such amazing friends and family. I can't let one person make me bitter and suspicious of everyones motives.
I can't and I won't let one person ruin the rest of my life.

Friday, 25 January 2019

Things Could Be Worse

Things could be a lot worse ... yes they could but they could also be a lot better. Just because things could be worse doesn't mean what's happening isn't hard to deal with.
I haven't really felt much like writing things down lately. I'm struggling a bit today so writing stuff down might help. I hope so. 
After my last scan in October and all the uncertainty over a lung nodule that showed up, I had a PET scan which highlighted more uncertainty. There was a possibility that the cancer had spread to my abdomen as well as my lung. What I've realised is that as amazing as all the technology is, and as clever as doctors are, sometimes they just can't tell what's happening straight away and they don't have a crystal ball. Cancer can be a sneaky bastard !  Scans can pick up all sorts of things that have to be investigated but it's only by waiting and repeating them that they can work out what's really going on. So they compare one scan to another and come to their conclusions.
I just had the results of my last scan. They've confirmed that there's no evidence of spread in my abdomen (hooray) but that the lung nodule is a metastasis (fucking hell). So fantastic news and shit news all rolled into one. 

Could have been worse...they could have said the cancer has spread everywhere and that there's nothing they can do. 
Could have been better... they could have said there was no evidence of cancer at all. 
I've been referred to The Royal Brompton Hospital in London to see the thoracic surgeon. I'm told he's one of the best in the country and as it's just one spot it may be possible to get rid of it. They use the term potentially curative treatment but they won't ever say cure.
So now I'm waiting again to see if I have to have lung surgery. They've told me I'll be seen within a couple of weeks. A couple of weeks right now seems like a couple of years. It's only 7 months since my last surgery to remove the bowel and ovarian tumours. My back surgery will be put off again. I don't want lung surgery. It's crap. I should be grateful that they can maybe do an operation, I know I should be grateful...its still crap.
That's one of the worst things about cancer that no one really tells you about. The contradiction in your mind of wanting time to stand still so you can make the most of life and wishing time away so you can get answers and move on to the next step. Even when nothing is actually happening it never leaves you. I don't think that is ever going to change now. There are times when I'll get engrossed in something and really be enjoying myself ...then bam... something to do with cancer pops into my head. It's so hard to shut off from it all. This last few days have been the worst.
I try not to go on about it when I'm with friends but sometimes I just need to get it off my chest. I hope I don't get on everyone's nerves. There's nothing worse than someone keep moaning all the time.
I've tried so hard to be positive and carry on with living. Some days lately I haven't had the energy and I just don't seem to get any joy out of anything. I'm getting frustrated with myself. I know I have to keep going and take each day as it comes but today is a bad day. I feel guilty for having a bad day when I've got so many friends and so much support and I know there are people in a far worse position than me. I've been panicking, not sleeping and pretty down. I worry about my Bipolar and having a relapse. I worry about dying. I'm worrying about everything. I don't feel strong or brave. I feel a bit sorry for myself which is pretty pathetic. I'm getting on my own nerves today. 
I rang my care coordinator and chatted to him. He says I'm being too hard on myself. He says what I'm feeling is normal.
Well, I hope tomorrow is going to be a better day. 

Thursday, 15 November 2018

Trust Me I'm A Doctor

Where am I now? Fuck knows !

The last few weeks have been horrendous. I've been let down so badly it's unbelievable and it's really messed with my head.
One minute I was feeling so grateful and happy and the next I can't stop crying and feel completely overwhelmed by it all.
After my last scan I was told everything looked clear apart from a lung nodule that had grown since the last scan, so I would have a follow up in three months. I then received a letter saying that if the nodule on my lung remained stable after the 3 months I'd be treated for a presumed lung metastasis.
I wasn't happy with that. If they were presuming anything why wait for three months? Why wasn't I told about it if it was on the first scan? In the end they agreed to have my scans reviewed by a lung specialist.
I had a call from the respiratory consultant to say he'd looked at my scans with two thoracic radiology consultants and that the nodule was in fact a benign pulmonary lymph node. He said he was 98% sure. I received a letter stating that it was benign and nothing to worry about and there was no reason why I couldn't have my back surgery.
I was over the moon. Celebration time!
Because of the cancer they decided to put my back operation on hold. I have a severe spinal stenosis and the only way to cure it is surgery. That was the reason I went to my GP in the first place a year ago. I lose the feeling in my legs and its painful to walk. It's not life threatening and I can still get about (even though it's really uncomfortable) but it does have an impact on everything I do, every single day.
Getting my back sorted would mean another huge step to getting back to some sort of normality.
Less than a week after receiving such good news I had another call from the respiratory consultant to say they'd looked at my scans again and that there is in fact a possibly cancerous nodule....what the fuck ? How can they do a complete U turn when they were 98% sure? Why would they even look at my scans again after they'd sent the letter out? It's all bullshit as far as I'm concerned. Some things just don't add up.
So now they've discussed my case with a lung surgeon who says it's too deep to biopsy and if they remove it they'd have to take half my lung away.
The next step is a PET scan within the next 2 weeks and take it from there. Obviously my back surgery will be delayed yet again.
It's a real mind fuck. Sorry about the swearing but that's how I feel at the moment....pissed off and pretty down.
I don't know what I want to do about it all but I'm finding it hard to trust anything that's said.
Its been a whole year of being told different things by different people, being fobbed off and endless waiting.
Maybe it's my own fault for wanting to know everything, for researching everything, for wanting to have a say in my treatment...maybe I should just go along with whatever I'm told and not question it. Ignorance is supposed to be bliss isn't ?