Looks Can Be Deceiving

 

I'm pleased I don't look too rough or ill (according to other people that is). Most days I don't feel that great but I am still managing to put a smile on my face. To be honest it helps to try and appear positive. If I feel miserable, by the time I've had a chat and a laugh with someone I usually feel happier. It's hard to engage with someone when they are always negative and I'd hate for people to avoid me because I'm coming across all doom and gloom.
That's why I write this blog, even though I haven't written one for ages (mostly because I've been trying to put cancer to the back of my mind) and this one is going to be brief as I can't concentrate.  At least if I want to moan or be pissed off on here it's not directly affecting anyone and I do get a lot of support from people who read this and that really helps.
I'm grateful I look ok on the outside but what's going on inside isn't good ...it really is shit.
So after two good scans and a good long break from hospitals and appointments, my last scan wasn't what I was hoping for. I now have a tumour in my trachea (windpipe) which if left to it's own devices will eventually suffocate me.
They can't 100% say what it is without a biopsy but my oncologist and surgeon are thinking it's most likely another metastasis from my original bowel cancer. Whatever it is it shouldn't be there and needs to go!
I had an appointment with a really great surgeon from the Norfolk and Norwich hospital. He was quite positive but realistic. So far every bit of cancer that's appeared has been removed by surgery or ablated (I call it getting zapped).
This time he doesn't think surgery would be in my best interests. Removing a tumour from your windpipe is a really complex procedure and carries a lot of risks. He also thinks that because I've already had it spread to my ovaries and lungs there's probably more cancer that's not showing up yet. FFS
I'm going into hospital tomorrow and he's going to do something called a rigid bronchoscopy and laser treatment so hopefully he'll be able to remove most of it and at least it will clear my airway. I'm scared about this procedure. I can't stand the thought of it...glad I'm having a general anaesthetic. Once that's done they'll review and decide what's next. I'm trying to look on the bright side ... something is being done and I'd be in a lot more trouble if the surgeon had turned round and said he couldn't do anything.

Thankfully I have a fantastic network of people supporting me and that is one of the most important things ...even so... 
cancer really is a bastard. 

Cancer and Coronavirus

 I can't believe I haven't written a blog since December...how time flies when you're having fun! 

Actually, I haven't really felt like writing a blog with all that's been going on in the world...my problems seem a bit trivial in the scheme of things (of course it's not trivial to me)

I'm writing a blog now though for my own benefit. I feel I need to process what's been going on and get up to date.

Christmas was the best Christmas I've had for a long time. I stayed at my parents and took Tommy (my dog) with me. It was lovely to spend time with my family. I didn't worry too much about anything for a week and it was great. 

 I'm not sure how but I ended up with a new oncologist in Ipswich. I really like him. He's much more positive and doesn't get the hump when I ask non stop questions. When we got my pet scan results it was decided that surgery was going to be the best option for the largest lung spot. He didn't faff about ... "you're young, lets get rid of it" he said. So in February I had a lung resection at the Cardiothoracic Centre in Basildon. They had to take the bottom half of my left lung away by something called VATS lobectomy (video assisted thoracic surgery). It is truly amazing what surgeons can do.
So, another bit of my body cut out and another scar to remind me. I thought the surgery would be a lot easier than my last op to remove the bowel and ovarian tumours but it turned out to be equally as horrendous as I developed something called a pleural effusion and ended up in back in hospital. Not being able to breathe properly is one of the most frightening things I've ever experienced. Makes the thought of Coronavirus even more worrying.
I got through it though and all things considered I feel reasonably good now.
I'm "lucky" I had it done when I did because any later and it would definitely have been cancelled due to the Coronavirus pandemic.
Maybe lucky isn't the best word to use when talking about cancer ... there's nothing lucky about any of it. Fortunate is probably a better word. Fortunate I got my op just in time.
I do consider myself lucky to have such good support from friends and family though. I couldn't have got through it without all the help I had. I'll never forget what people have done for me and I'm so grateful. Walking my dog, gardening, shopping, collecting my prescriptions, positive messages ... people are amazing. 
My son stayed with me for a couple of weeks after my op, which he did the last time too. Having him with me was so nice as we don't get to spend as much time together as we'd like and having him there definitely speeded up my recovery. The worst thing was my back. It doesn't take long to lose mobility. I could hardly walk without pain and losing the feelings in my legs and was still getting a bit breathless when my son had to go, so I asked for help and had a whole army of friends turned out. Every day for nearly 3 weeks I had someone with me to help walk Tommy. I'm a great believer in the saying " if you don't use it you lose it" and I'm 100% sure keeping active has helped me get past the two year mark with this shitty disease.
When they did the biopsy from the lung it was confirmed that it was a metastasis ... the bowel cancer has definitely spread to my lungs.
It was all quite positive though ...they completely removed it and apart from an annoying cough and slight breathlessness I don't have any major problems from it. We discussed chemo again and even though some oncologists recommend it after surgery mine didn't. The only way I would ever consider chemo is if it will do me more good than harm. I'm trying not to think about that yet but I will at have to some point. The plan was to have a post surgery scan and then one every three months. 

 
Then Covid happened. I was just starting to feel better and looking forward to getting out more when I got the letter saying I was in the shielding group and the advise was not to leave the house or have any contact with anyone for 12 weeks. That sent me into a panic. I'd worked so hard to get myself fitter and I knew that staying behind the same four walls for 3 months would finish me off, mentally and physically. What would be the point? Might as well just give up and die now.
I talked to my oncologist, my sister and friends and we all came to the conclusion that staying home would do me more harm than good, so I decided to carry on taking Tommy out every day. It's easy where I live to stay away from people and as I like to go out so early I figured I wasn't putting myself or anyone else at risk.
That's what's keeps me going ... getting out in the fresh air with my dog. Some days it's a real struggle physically but it's worth it. That and talking to my sisters and Mum every day and staying in contact with friends by phone and social media. Photography is another lifeline for me and even if I only use my phone if I'm too knackered to carry my camera there's always something to see and take pictures of. Even though I'm used to living alone and like my own space I've found it hard being isolated.
I knew that Covid was going to have an impact on healthcare so I wasn't surprised when my endocrinology appointment was cancelled and that I didn't get my scan at 3 months. They told me I'd get my scan as soon as it was safe to do so. I didn't worry too much until it started getting close to 6 months since the last one. I didn't want to keep pestering the hospital but my Macmillan counsellor, who is amazing and a great support, persuaded me that it wasn't pestering them and that I should push to get it done. So much can change from scan to scan and I figured they wouldn't have said have a scan every three months if there wasn't a risk of the cancer progressing. I eventually got it a week before the 6 months was up.
The results weren't the best news but could have been worse. I really hate it when people say that to me but I'm allowed to say it to myself!
The scan showed three more lung metastases on my other lung. The good news is that the lung where I had my op is clear. My oncologist has referred me to a radiologist for something called Radiofrequency ablation (RFA). Zap the buggers! Hopefully it will get rid of them or at least keep them at bay.
The radiologist rang me and explained everything. It's much less invasive than surgery and causes little damage or side effects. He's confident he can treat them.
The only thing is he's got a backlog of patients due to Coronavirus so I've got to wait 6 to 8 weeks. He's put me somewhere in the middle of his list. He thinks that the rate which they are growing is quite slow so I should be ok to wait that long. I hope he's right because if not I'm buggered as once they get past a certain size they can't do it and the only treatment will be chemo for life. So I'm now waiting for a date.
I wasn't really surprised that the scan showed more metastasis. It was inevitable really. I know what I've got isn't cureable.
I'm trying not to think too deeply about it or too far ahead. I need to focus on the now and right now they can do something which could prolong my life for weeks, months ...maybe even years.
Coronavirus is obviously something that could kill me if I got it but cancer is definitely going to kill me eventually so I'm not going to get bogged down with it. I'm being sensible but I'm not being a prisoner in my own home and I'm not following the shielding guidelines that say I can only go out and meet with one other person. I won't go shopping or anywhere busy but I've had my sister and close friends round in my garden and I've met friends outside at a distance. It's up to me to keep myself safe and I am doing just that.
Sometimes I feel a bit useless and not sure what I actually contribute to this world but right now I'm just trying to get through each day the best I can and hope I get the treatment I need as soon a possible. 

* The picture I've posted was taken just after lockdown and made me realise how lucky I am to live where I do and have my dog and to be able to get out every day. 

Ticking Time Bomb

 I've been trying to write an up to date blog for weeks. I keep writing stuff then deleting it. Probably sums up my mood at the moment...bit up and down and all over the place!
I had a really lovely phonecall the other day from a friend who I haven't seen for a while and she's inspired me to get writing. I've met up with friends, had some great days and evenings out and I'm loving having my new dog, so I shouldn't really complain.
Nothing much has changed as far as the cancer goes. My last scan didn't show up anything new and there was minimal growth in one of the lung mets and the other is still stable. Compared to a lot of people with Stage 4 cancer it's a brilliant position to be in. It's still an incredibly difficult situation mentally though, it's a real head fuck , excuse my language. I've got cancer growing inside me, just lurking there and cure isn't in the doctor's vocabulary. I do feel like a ticking time bomb. No one, not even the most experienced oncologist, surgeon or nurse can tell me how long it will be before things change. It's really hard to put it to the back of my mind. I feel like I should be grateful that things are stable and I'm able to carry on with a relatively "normal" life at the moment but sometimes I just feel scared, pissed off and not very grateful at all!
I've seen how quickly things can change for people in my situation and it's frightening.
The most frustrating thing is not feeling in control of the future. I guess nobody is really in control of their future but it's still bloody hard to deal with. If there was an end to it all maybe it would be easier.  "Have this done and you'll be be better and can move on". That isn't something I'm going to hear. I try to keep positive and there's always hope that there'll be some new treatment or something that will stop the cancer in its tracks. It's just hard when there's no real plan to move forward.
I feel ok at the moment. Sometimes I get ridiculously tired, sometimes I struggle with my back and sometimes I have to really push myself to do anything but I do try. I have had a few really bad days. I find myself waking up at silly o'clock in a panic. I feel like I should be doing things and making the most of life. Mostly I do but there have been times lately when anxiety and just tiredness gets the better of me and I end up missing out. Then I feel like I've wasted a day and get frustrated about that. 
I'm not going to have back surgery now. I don't want to tempt fate. It's a huge op with a long recovery time and even though it's not great I'm managing it. It's been put off so many times I think maybe it's not meant to be.  It does affect me on a daily basis but I just get on with it. I still probably do more exercise than a lot of people. If I didn't have cancer I'd definitely have it done but after a long discussion with the surgeon we decided to leave it. I don't want to spend time in hospital or be out of action for months when I don't know what is happening with the cancer.
My thyroid levels are within the normal range now (well they were a month ago) and I'm going to stay on a maintenance dose of medication to hopefully keep it in check. The first Endocrinologist I saw was pushing for me to have a thyroidectomy but again I'm not going to have an operation unless it's essential.
So where am I now ? Fuck knows. Back in limbo land!
My oncologist says he can't do anything for me at the moment and I went to see the lung specialist in London again and he said he could operate and remove both lung metastases (yay) but that there's no evidence that doing that would make any difference to my length of life ( oh 😣). He wouldn't say that he would be operating with curative intent. It would mean two operations as they can't do both at the same time. He was very nice and quite positive but not exactly enthusiastic. It's all ifs and buts and maybes. We asked about something called Cyberknife ( a type of radiation) and he said why not! He referred me to the Royal Marsden. I don't know what's happening there yet as I've been referred back to Colchester to a radiology oncologist.
I had a PET/CT scan last week ... I'm assuming to make sure nothing else is lurking before any treatment. I have no idea how long before I get an appointment or any results. Waiting for scan results are always the worst. I hope it won't be too long. I don't want that hanging over me over Christmas.
So, once I've seen the radiology oncologist I'll need to make a choice....
Do nothing yet, have chemo, have lung surgery or get my lungs zapped! It's hard to know what to do when no one in the medical profession will advise me either way. When I asked my oncologist what he would do in my situation he said that wasn't a valid question, same with the surgeon and the specialist nurse. They have no answers.
It will be my choice. I guess I'll have to wait for the scan results and see what the radiology oncologist has to say then make a decision. 
On the positive side I've got plenty of things planned to look forward to. I have amazing friends, family, a great hobby and my dog ... so not all doom and gloom. 

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. 

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 !

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 ! 

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 !

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.

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. 

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 ?

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.

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.

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 ...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. 

WAITING, WAITING, ALWAYS WAITING

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 am not a statistic!

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.

Life Goes On

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. 

At a snails pace

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.