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 ?

Saturday, 27 October 2018

Guilty Until Proven Innocent

So I went for my scan results. Obviously I knew they weren't going to be saying I'm cured. That won't happen for years, if ever.
It wasn't bad news. It was actually pretty good news. There are no signs of anything suspicious in my abdomen or bowel or liver. Everything has healed really well since the surgery and all the bowel problems I've been having are probably due to the fact I had surgery and my bowel is shorter and isn't working as efficiently...hopefully nothing a change in diet won't address. They have arranged another Colonoscopy to make doubly sure....  so really I should be celebrating. Woohoo!

There always has to be a BUT though. It's never straightforward. There always has to be something that they can't give answers to.  There always has to be some problem that can't be sorted without waiting.
So apparently now I have 2 lung nodules, one on each lung. At the last appointment they only mentioned one. I've had numerous scans before and they weren't there then. One has shrunk slightly but the other one has grown.
They could just be benign nodules and nothing to worry about or they could be the cancer spread to my lungs. They just don't know so they want to wait and scan again in three months to see if there are any changes. If I hadn't already had cancer that had metastasized I'd probably still worry but not half as much. I can't help thinking the worst.  I asked why they can't do a biopsy or remove them as one has already got bigger. I don't want to have what happened last time when I had a mass that more than doubled in size by the time they decided to remove it. They've now agreed to send my scan results to a lung specialist to ask for his opinion. That makes me feel slightly better about it.

I don't know what's going to happen about my back operation either now. The oncologist and orthopaedic doctors were supposed to be liasing ... that hasn't happened ... which is no surprise really. They say they can't advise the orthopaedic surgeon. They can't say yes everything is fine go ahead. All they can do is give him the scan results and he will have to make the decision. I'm seeing him in a couple of weeks and hoping he'll still agree to getting it done sooner rather than later.

I really should just put it all out of my mind. Could be nothing ... innocent until proven guilty. The thing is they said that about the mass in my pelvis, about the stricture in my bowel, about the polyps in my bowel... they could have been nothing but turned out to be something. I don't trust the words "it could be nothing". I can't help but think of anything that shouldn't be there as guilty until proven innocent !

So now I have to wait yet again and try to put it all to the back of my mind and get on with things. Of course that's easier said than done ... one minute I feel fine about it and quite positive, the next I feel like it's all going to end in disaster.
Don't worry until I really have something to worry about. Yep ... I can do that piece of cake !   I can't but I'll try my hardest

Monday, 22 October 2018

To Chemo or not to Chemo ...that is the question


Probably one of the hardest decisions I've ever been faced with. I know there are always choices with any treatment but I didn't realise how complicated it would be. I thought it would be a case of either needing chemotherapy or not. You're either cured or your not. They just can't tell sometimes.
After surgery I was offered a course of what they call adjuvant chemotherapy. It's the standard treatment after surgery to lessen the chance of cancer recurring. Even if the surgery was successful at removing all visible cancer, microscopic cancer cells sometimes remain and are undetectable until they start spreading or new tumours appear. Chemo is supposed to kill those cells that may or may not be there!
Adjuvant therapy doesn't guarantee cancer won't recur. It doesn't always work. It can help reduce the risk that it will come back, maybe... but at what cost?  Chemotherapy isn't like taking a paracetamol for a headache.... it's the use of highly toxic drugs that don't  discriminate between healthy and cancerous cells. There are huge risks, horrible side effects and it can often cause lasting damage. I'm not completely anti medication. If you need it and it works then great but having been on so many different drugs over the years I know all too well that they don't always work and can cause more problems.
I had to weigh up the risks against the benefits...not an easy task.
I declined having chemotherapy ... declined not refused. There's a difference. After lengthy discussions with my oncologist, specialist nurse,  gp, family and close friends, I decided that I wasn't going to put myself through it for the next six months.
I didn't want to risk a relapse of bipolar ... and the drugs they were suggesting certainly can mess with your head and I didn't want to risk neuropathy as I already have problems with losing feeling in my legs. I need an operation on my back which would have to be put on hold for months if I had chemo.
I also wanted to go on holiday and actually try and make the most of feeling a bit better before being out of action again with my back. I wanted to make the most of things while I felt ok. I never got to go on holiday but I've certainly tried to do as much as I can.
There's a 1 in 3 chance of recurrence for the stage I'm at and having chemo would reduce that risk by less than 10%... so I was told. For some people that might seem worth it but I don't think so.
Unless they'd told me I'd definitely die without it or that it would be 100% effective then I would rather take my chances. My gut feeling was to say no.
After the first meeting I felt reasonably confident I'd decline. Then I got the report from the oncologist and it read like it was a completely different meeting! He made it sound like I was the perfect candidate for chemo and was refusing to have it because I had bipolar ! I was fuming and really upset.
We arranged another meeting and I asked him if he had written it like that just to cover his arse in case the cancer was still there! He did apologise and after another lengthy discussion I came to the same conclusion ...the risks were not worth it. He did write another report saying he fully supported my decision and put his apology in writing. I guess that's something.
I've been fairly confident with my decision but 4 months down the line and waiting for scan results I can't help but be anxious. I'm more nervous about getting the results this time. Seems doctors don't know everything after all and I'm just hoping I was right to go with my instinct.

Wednesday, 10 October 2018

Now that you have Cancer can you just stop being Bipolar!

Cancer sucks ! There's no getting away from it. As soon as anyone mentions the dreaded C word it brings fear. As soon as you mention the C word people look at you as if you're some sort of hero. 
Well I can tell you as soon as you mention the B word the reaction isn't the same. Bipolar sucks too actually! So do plenty of other shitty illnesses!  Sometimes people do have that look of fear when I tell them I have Bipolar but not for the same reasons. The thing is what goes on in your head can be just as bad, sometimes worse than physical illness. Put it all together and it's not a great combination. 
If it wasn't for the NHS I'd have been dead about 10 years ago so I'm really grateful that we have it. It just amazes that there is still so much ignorance and stigma surrounding mental health. You'd think that with all the mental health awareness campaigns and encouraging people to talk and be more open about it that health care professionals would have more empathy and knowledge. Don't get me wrong, there are many that have amazing insight but unfortunately equally as many that seem clueless.
I worked in the NHS for 20 years so I know how it is.
It seems that each department deals with their bit and they're not interested in looking at the whole person.
I find this difficult to grasp because mental and physical health go hand in hand. Taking care of your mental health makes it so much easier to cope when you're physically sick.
Doctors tend to disregard mental health completely or blame symptoms they can't explain straight away on mental health.
I get that it must be difficult because I find it hard to know what's causing what myself... and it's my body. When I had a heart attack I thought I was having a panic attack! 
All the way through I've had to fight to be heard. Thankfully my GP knows me well enough to know that if I go to him complaining of pain he needs to investigate and not just brush it aside.
He's one of very few doctors I've met that treats me holistically. Right from the start of this whole nightmare he recognised that such a traumatic physical illness could impact hugely on my mental health and could lead to a relapse in Bipolar. He referred me back to mental health and I have had access to support from the Specialist Mental Health team. I'm really lucky to have someone I can call on and that has made a huge difference. It's made all the difference. In fact I'd go as far as to say it's made a life or death difference. Yes can die from Bipolar as well as Cancer.  I nearly did.
I'm not saying the impact of having cancer is worse because of Bipolar or that I need preferential treatment. I'm saying a Bipolar diagnosis or any mental illness should be taken into consideration when treating someone.
I've had a number of incidences that could have tipped me over the edge but thankfully I'm fortunate to have a good support network and people to fight my corner, especially my big sister who has advocated for me all the way through and very close friends.  I have experienced vast differences in how I've been treated and if I didn't have the support I would have given up.

The nurse that asked if Bipolar came under "dilusional".
The nurse I overheard talking to the specialist ..."she's refusing medication because she's bipolar"
The Dr that wrote in his report in inverted commas ..she admits to being "bipolar"
The nurse that asked if I had anxiety then told me "well of course everyone has that nowadays"
The Dr that said he didn't know I had Bipolar and that it wasn't relevant anyway.
The nurse that said "oh you poor thing ,  well you seem normal, you seem very clever"

I could go on. These things may seem trivial but they do have a huge impact.
Negative things always take longer to forget somehow.

On the other end of the scale I've had some really good experiences which I'm certain helped me recover much more quickly.

The nurse who when I told her I have Bipolar asked straight away "is there anything we can do to make your stay in hospital easier?"
The nurse who acknowledged my need for my own space and routine so organised for me to have my own room.
The nurses who got me through panic attacks in the middle of the night.
The nurse who chatted to me when I was awake at ridiculous times in the night.
All those nurses who acknowledged my problems yet treated me as an intelligent human being.

Probably to the outside world I've coped amazingly well and I suppose I have,  but just because I remain positive on the outside doesn't mean that I'm not struggling on a daily basis. I haven't miraculously been cured of Bipolar just because I have/had Cancer.

I have worked hard to keep myself well and I've learned ways to deal with things. Things have improved over the years as far as mental health awareness goes but there's still a long way to go.