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 ?
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.
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.
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 ...you 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.
Sometimes the waiting is worse than finding out what's wrong. I'm not the most patient person. If something needs doing I like it done and dusted!
It took 5 months from being told I had a mass on my pelvis to being diagnosed with bowel cancer and having my tumours removed. 5 months ... doesn't seem long if you say it quickly but being stuck in limbo, in pain and not knowing what's wrong for 152 days was excrutiating. Even after being diagnosed there's still the wait for treatment, then the wait for more results, then the wait for an appointment to find out what happens next, then the wait for the next appointment...on and on and on ...
It doesn't matter what anyone says it's like torture. Still is.
No one should have to wait that long to get a diagnosis and treatment. The new target to be implemented by 2020 is that anyone with suspected cancer will be diagnosed within 28 days ...can't see that happening. Obviously tests and results can't be done in a day, it does take time but the NHS is already overloaded and half the time the left hand doesn't know what the right is doing. There are thousands of people just like me ... always waiting. For some it ends up too late.
I can't tell you how many times people have said "if it was cancer or if they were really worried they'd have you in quickly"
or "if it's cancer they wouldn't keep you waiting for an appointment".
Unfortunately it doesn't work like that.
When they say "we're not overly concerned" I don't believe a word.
I'm now waiting for a scan to check if everything is clear and if I'm cancer free. I need another major operation on my back and they won't do it until after the scan. If I've got to be out of action again for months I'd rather it be sooner than later. I've not been that well recently and had a some new problems so I really need to get it done so I can relax. Of course its impossible to relax about it ...it's always in the back of my mind. Every little ache or pain or upset stomach and you can't help but worry if it's something more sinister and the cancer is still there lurking and waiting to do more damage. It should have been done during September but I've only just got the appointment and it's not until 12th October. I should be pleased to have an appointment at last but instead I just cried when I opened it. It's not long really now but to me seems like forever. Then there's the wait for the results. Ughhh
Whatever the results are I am going to have to get used to the waiting because it's going to be at least five years before I can put it all behind me.
The only way to get through it is to try and keep busy in between and carry on living. Easier said than done.
It's only 4 months since my op and I've recovered amazingly well really. I forget that and get frustrated. I want to be doing everything that I used to do ... I'm giving it a go but really I feel exhausted a lot of the time. I've had some brilliant times with friends and family ... I'm so lucky to have such good support but sometimes I just feel like I want to give up and hide away or just disappear. Of course I won't because I'm stronger than that and I know I have people that care... and they won't let me disappear. One thing I have taken from the trauma of the last year is to keep those people close who lift me up and forget about the ones that have dragged me down ...that's another story!
For now I will stick a smile on my face and get on with it and try to be thankful for the good things.
I wanted to write this short blog post because I don't want anyone to think I'm about to drop down dead !
As soon as you mention the words Stage 4 cancer people assume it's a death sentence.
Stage 4 Colorectal Cancer
Colorectal cancer metastasized to the ovaries
Krukenberg tumour
Type any of these terms into Google and it's pretty grim reading. Statistically the prognosis is poor ... the word terminal pops up quite frequently. The five year survival rate for metastatic colon cancer is less than 15% according to the first article that popped up. There's very little information about Krukenberg tumour and what there is, well it's dismal reading and unless you're a mathematician statistics are pretty confusing.
If everything I read was true I'd be planning my funeral by now.
That's the trouble with Googling you don't always get the full picture. I always do it though. I can't help myself. I still do it now, trying to find that one article that tells me something in my favour.
The thing about cancer statistics is they don't take into account individual factors or specific treatments. They are based on broad numbers of people and are at least five years old. Treatments are advancing all the time. People can be cured and people can live for years with the right care. There are so many factors involved.
So it's not necessarily a death sentence. My tumours were accessible and removable. The cancer spread from my bowel to my ovaries and as far as they could tell it hadn't spread any further. I've had surgery (which I'll talk about later) which was potentially curative. They think they got it all.
So ...... maybe I am cancer free, maybe I am cured. They can't tell me I'm cured. Only time will tell but I'm hopeful.
Sod statistics!
I'm Still Alive...Yay !
So much has happened in the last few years it's unbelievable when I think about it. I could write a book ! I've decided to start this blog again instead.
I really ought to change the name of it from
"Surviving Crazy...My life with Bipolar" to "Surviving Crazy...My life with Bipolar and a whole host of other shitty illnesses and traumas "
Bit long winded though and a bit gloomy sounding !!!
Bipolar disorder, heart attack, fractured pelvis, osteoporosis, spondylolisthesis, spinal stenosis, Graves disease (hyperthyroid), Stage 4 bowel cancer, ovarian tumour... I've probably forgotten something but that'll do. Don't want to be greedy!
I also moved house, lost my "best friend" (she's not dead btw, but that's another story), made new best friends, made more new friends, fell in and out of love and back again, took up photography, stopped driving, started driving again, visited places I'd never been before, lost touch with people, reunited with people, laughed more than I've ever done before and cried more than I've ever done before and countless other things ... It's been eventful !
How ironic that I've spent half my life battling with thoughts of suicide and wishing my life away yet when faced with a cancer diagnosis I decided dying wasn't an option and I want to live forever.
Dying doesn't actually worry me ...living in pain and not being able to do the things I want to do really scares me. Not being in control scares me.
Well... I'm still here and somehow I always get through.
I want to share my experiences of two very different but potentially life threatening illnesses...cancer and bipolar and the impact they've had on me and those around me.
I wouldn't like to say which one is worse. It's a bit daft when people try to compare illnesses. The worst one is the one that's causing you the most grief at the time. I wouldn't wish either on my worst enemy yet both have given me insights into life that I might not have had without them.
Of course it's not all been doom and gloom. I've met so many amazing people and made some great friends along the way. I've done things that I may never have done if circumstances had been different.
The way things are at the moment it would be easy to say I feel like the unluckiest person alive, but no, I'm going to turn it on its head and say I'm the luckiest person alive because I'm still here and the good things I have going on far outweigh the bad.
I don't have a crystal ball to see into the future. I don't think I'd want to know anyway. I'm just trying to get on with things as best as I can. Writing helps me to organise my thoughts and get things off my chest. At the end of the day it doesn't really matter if anyone reads it or not. Maybe it might help just one person put things into perspective or gain some insight and that would be a bonus.
That's enough for now I think, so I'm making this my first new blog post.
