Wednesday, 10 October 2018
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.
Monday, 1 October 2018
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.
Tuesday, 28 August 2018
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
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.
Wednesday, 22 August 2018
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.
Monday, 2 February 2015
It's been 9 months since I wrote my last blog. I don't know why I stopped. It certainly wasn't because I had nothing to say.....I always have something to say!! I just couldn't seem to get my thoughts on paper. So much has happened, so much is different yet life goes on just the same!! As far as Bipolar goes I've actually been reasonably "stable" for a while. By stable I mean I haven't been hypomanic since I started taking my meds again and I haven't been so depressed that I felt suicidal. Even with some pretty significant things that have happened I've managed to keep in reasonable control. I know 100% that it's partly due to medication and partly due to the fact that I am getting so much better at recognising problems before they get out of hand. For me that's the key. Before I was properly diagnosed I had no idea what was going on let alone what I could do to help myself. I know and accept that I need help from my GP and mental health services but I also realise that in order to stay well I have to take some responsibility. It's not easy. I have had some pretty down times but I sought help and managed to bring myself back up. As well as the Lithium I'm now taking a tiny dose of antidepressant. I wasn't sure as antidepressants can induce a manic episode in people with Bipolar, which is what happened to me before. My psychiatrist assured me that taking it alongside the Lithium, which is a mood stabiliser, would minimise the risk but would hopefully be enough to raise my mood. It works well and so far it's the best combination of meds I've had, with the least side effects.
From an outsiders point of view I guess I have a cushy little life. I have my flat, my dog, no job responsibilities and enough money to live on. Don't get me wrong I'm very content with my lot but day to day life is not easy. Even when I'm stable the simplest of things can be such a huge deal. Every day is a challenge. Sometimes just getting dressed is a huge task. It's the little everyday things that take all my effort and energy. Normal everyday things seem harder to cope with nowadays. I find it hard to cope with too many things going on. I've been volunteering in a charity shop again and it's great but I still don't know if I could cope with a "proper" job yet. It's nothing to do with whether I'm able, it's whether I can be reliable. I can't say I'm really happy but I am sometimes. I'm sure I'm not mean't to be a miserable person and I try not to let people see when I'm unhappy. That's the hardest thing. My type of Bipolar means that I'm depressed more than high and it's hard work putting on a smile when I just want to cry.
It's impossible to write about the last 9 months in one go. I can't. I think one of the things that's had the biggest impact on me was losing a really close friend. He took his own life. I miss him so much. I will write about it all one day but not yet. The most positive thing to happen was being reunited with my son. He's been drug free for 10 months. I will definitely be writing a blog about that. There is someone else who really got to me. More than I thought possible. I did write a blog but decided not to post it. I'm not sure I'll ever quite get my head around it but some things just happen and that's that.
I feel like I've drifted apart from a lot of people. It's my own fault. I tend to shut myself off and then time goes by and it's harder to do anything about it. I'm still really lucky to have my best friend and her family. I think I'd find things much more difficult without their support.
I feel like I've drifted away from my own family a bit. I know I need to make more effort.
I can't believe I've had Libby (my dog) for nearly a year now. She's the one constant in my life. She definitely keeps me going. I've made some really lovely friends because of her and that's been a huge bonus.
I've got things planned for this year and I'm determined not to miss out on any them.
So, I guess life just goes on and things are ok really.
Tuesday, 22 April 2014
As well as bipolar mood changes, one of the most difficult things to cope with are the changes in energy levels and sleep that run alongside. For months on end I've got by with hardly any sleep at all. Two to three hours a night, maybe four if I've been lucky....sometimes no sleep at all. I did feel a bit tired at times but not all the time. I'd think nothing of being up and "doing" at 3 o'clock in the morning. I was so much more active. I had energy to burn. I've been expecting things to change but I must admit I am struggling. For the last few nights I've slept solid. I've been ready for my bed at 10 o'clock and slept right through until the alarm goes off at seven. Nine hours without any disturbance. That's a huge difference. You'd think I'd feel better for it. Trouble is I don't . Physically I feel worse. I feel more tired than ever. I feel like someone has literally sucked every last bit of energy out of me. My whole body aches. By the time I've taken the dog out and tidied up a bit I'm ready to sleep again. Yesterday I sat down with a coffee at 9 am and must have nodded off. I woke up two hours later with Libby (my dog) nudging me to get up! I'm sure if it wasn't for her I'd sleep all day and night. Every little thing is a huge effort. It's so frustrating. I can't imagine how people manage to do everything. I can't imagine how I used to look after a child, a husband, a house and garden.....now sometimes it takes such a huge effort just to get myself dressed. I feel about a hundred years old and I look like shit. I found myself crying because I needed to wash my hair and the effort just seemed too much. I find myself crying a lot. I don't really know why. I don't know that there's much I can do about it. I'm trying my hardest to keep going and that's all I can do. I went to my sisters over the weekend and it was a lovely day but by the time I got home I just felt so drained and overwhelmed by it all. I'm trying to keep doing the essential things. I know if I let my flat get in a mess, especially with the dog, I'll get in such a state over it I won't be able to do anything. It's funny, I always think I've got good insight into my moods, yet it's only after the event I realise the full impact. Even though I was irritable and twitchy when I was "high", I think I'd rather be like that than how I am now......miserable, unmotivated and absolutely exhausted. Of course at the time I was wishing for calm. Now I'm doing everything at a snails pace and there's nothing I can do about it. My mind and body just won't let me go any quicker. What I really need is to be somewhere in between but it's not happening yet. It's so hard when it seems I go from one extreme to another with no real let up in between. I often feel like just giving up but I know I can't. I'm still hopeful that the meds will start working properly again soon. I've felt a lot worse than this before and that in itself gives me a reason not to give up. I might be slow but as long as I don't stop things will be ok eventually.
If you're depressed then you're depressed. It's got nothing to do with what your doing or not doing. I agree that having a routine and things to do helps. I agree that shutting yourself away can make things feel worse but depression is an illness. If you have sickness and diarrhoea, carrying on with your daily routine doesn't stop it. Yes you can help yourself by drinking plenty of water and resting but the illness has to take its course. Yes you can help yourself with depression but it's not as simple as just "keeping busy". There's a big difference between being sad or lonely or bored even and being depressed.
Whenever I've been "high" it's inevitable that a "low" period follows. The more I learn about bipolar and how it affects me the more I can try to do things to help myself. I think the medication is slowly kicking in again. I'm much less irritated. When I saw my psychiatrist, if he didn't tell me once he told me about 10 times to make sure I keep taking my medication! My GP was the same. Of course now I know that the consequences of no medication are not good I will stick with it. The Lithium at least.
So, I decided to get a pet. I've never been much of a dog person but my son had the most beautiful Rottweiler and I loved her. My best friend has a puppy and he's brought her so much pleasure. Both my sisters have dogs. Nearly everyone I spoke to thought it would be a good idea. I live on my own and I have so much time on my hands. With my mood so unstable lately work hasn't been a option and it's been doubly hard to get into any sort of "normal" routine. I thought getting a dog would help give me a purpose again as well as some company.
Well I've had her for just over a week and I have to say what a huge difference she has made to my life already. I just love her. I haven't found having her easy. In fact I have felt quite overwhelmed at times by taking on such a huge responsibility. I am petrified that I'll get really ill again and not be able to cope. I know from experience that I start something and it's all good but then my mood changes and it all goes haywire. I need a back up plan in case anything happens to me but I can't quite work it out yet. The thing is, I am coping now. I have to. I can't let her down. She is totally dependent on me. My mood is low but I am 100% certain that without my new little friend things would be worse. I have to get myself at least partly organised. She has given me a reason to get out of the house, a reason to keep going. Even when I've wanted to shut myself away I've had to do things. She seems to sense if I'm down and snuggles in on my lap and when I cry she snuggles in closer. She helps lift my mood just by being there. I've found myself laughing and smiling at her antics. She's such a clever little thing and each day as I teach her something new I get a huge sense of satisfaction.
I'm still not sleeping properly but I am going to bed and getting some sleep, which is an improvement. I'm finding it hard to keep on top of everything that needs to be done and sometimes even the simplest thing seems like such huge deal. I get upset that I find life so fucking hard when to most people it seems like I have it easy. I get frustrated with myself for not being able to do everything I think I should be able to do. I have to keep telling myself that it's ok and that I am doing well. I know that it may take some time for my medication to reach its full effect. I also know that medication is only part of what I need to keep me well. I know I have done the right thing by getting my dog. She can't take away my symptoms. She can't "cure" me anymore than medication can but she's definitely been great "therapy" so far. She's definitely playing a huge part in my recovery. She's definitely given me something to think about other than myself. She's definitely a friend already.