Saturday 23 January 2016

Living with remission but dying inside.....



   I've wanted to do a Mental Health & Cancer blog post for a while. I think they are closely connected and both need addressing together. Being told you have cancer was like a bomb going off in my head and it needed some getting use to. My cancer was doing its own thing but my head was stunned. The mental health side would have to be put on hold as now it was going to be all about Cancer.  
   
Last year in October it was "World Mental Health Day" & "Bone Cancer Awareness Week." (I was diagnosed with bone cancer in 2008). Also last year in November it was "Pancreatic Cancer Awareness Month" & sadly this was the cancer my beloved Father died from in 2014 when only 57. I thought that Cancer & Mental Health was the right first blog to post about because they both decided to come into my world. You never hear about the mental health side of cancer. 

"Living with Remission but dying inside....." - I chose this title to show the psychological impact cancer has on my emotional & mental health. Regardless if I'm in remission physically, mentally I'm suffering and my depression/PTSD is one of my medical conditions that can prevent me having a good quality of life sometimes.














Living with Remission but dying inside.....


  When most people hear you're in remission they look at you like everything is much better for you.  Even if the cancer has physically all gone (which is now known as NED - No Evidence of Disease or NERD - No Evidence of Recurring Disease), people sometimes forget the effect it's had overall on your mental & physical health. You're an individual and may not react like everyone else.
People sometimes think it's easy for everyone to move on with life, look forward to the future and especially be positive. It's not possible for everyone. People like myself are missed out, forgotten and I feel like I'm living half a life. Until you're in the right frame of mind and thinking clearly you won't start to feel positive about life.
  Since day one, I have spoken to many cancer patients who have suffered from depression or felt bad at some point in their cancer journey. The most positive people can even for a short while feel depressed and I'm sure it's the same for any other illnesses. Everybody has different ways of coping with cancer regardless whether outcomes are good or bad. Depression can start even when you don't have an terminal illness. It can be related to many different factors in each person's personal/social life, death, divorce, moving house, break ups, losing a job, not being able to get a job, insecurities about their body image, being bullied, not being able to pay the bills, becoming homeless, the list goes on why depression is triggered and even good events like a new job or retirement can be a trigger too.

                                                 



 Most young people look forward to becoming an adult at eighteen. Getting your first drink in your local, you feel you are starting to become independent and look forward to maybe starting university or work. Later on, I had surgery on my lower spine and sacrum to remove a benign tumour. I had to learn to walk again and it took me seven months while mainly bed-bound in hospital, unlike my first attempt when I started to walk at nine months old as a baby. 

Another milestone, on my twenty-first birthday, I didn't think anything was going to happen as everything was going well at the time. 

Out of the blue I received news you have cancer! I thought maybe my benign tumour had come back, I wasn’t even aware my benign tumour could turn malignant. It was the biggest shock I’ve ever had and so unbelievable that I thought “are you sure?” 

I don’t even feel that bad. It’s not until you actually start cancer treatment you start to feel unwell or feel the side effects. The day I was told, my mum was with me but unfortunately my dad could not make it that day so my mum called him in Ireland. That day went on, it seemed forever. It was a very hot day and we waited five hours for our hospital transport home, there was no room to grieve or be by ourselves. We both sat outside outpatients with tears in our eyes, my dad after his shock kept calling my mum asking "what did they say?" It was such a big day not just in my life but everyone's.  

 I've suffered from depression not only because of cancer but the things that it deprive's you of. I had gone through the menopause at twenty-one! I wasn't given the option to preserve my fertility as the doctors thought I was dying. It has caused the most excruciating pain inside mentally that I can't totally explain, just that it's changed me as a person, made me angry for a while and how I look at life now. I can deal with the physical but sometimes find that feelings are much harder to deal with. That empty feeling inside of me, thoughts that I'd never know the feeling of what it's like to be pregnant or give birth to my own baby and how I wouldn't give my parents grandchildren. Sadly I can't adopt either because I'm too unwell to look after a baby properly. This is just one side effect of my illness that has caused my depression and this can come on at anytime like a sledgehammer! I know it will take time to heal but one day I'll actually have to "let go" of things out of my control. Any of us that hold onto something that we're always fixating on, can at some point emotionally start to become internally destructive to us. 


        Source: Inspirational Quotes app           

 Letting my thoughts out by blogging or using a variety of things to help myself cope better as time goes on may help me heal but I would definitely love to keep doing creative and art stuff as I enjoyed it a lot.

Sometimes I stop and think for a moment, "did this happen to me?"

At eighteen I was told I wouldn't be able to physically hold a pregnancy. By Twenty-one I was told I had cancer and that not long after chemo I would lose my hair. 





I was told in December 2008 I would only have eighteen months to live! Then being told I was infertile just made me feel like my world had stopped. When I was diagnosed with chronic fatigue, it was like I never left the bed again and now you're in social isolation.

 At the time it feels like you're the only one going through this and it's never going to get better. Even though I haven't fully come to terms with it, in time I am slowly starting to push things to one side and when I'm ready I can talk about it more. So I suppose when you are not depressed you can be more positive and deal with things better. Obviously when you're depressed it's hard when people tell you to stay positive or to have a certain mindset because even though you want to be positive it just doesn't happen.
 The depression is trying to drag you down and it's hard to explain to people that sometimes it feels like you have no control over your life. It might be hard for some people to understand, if they've never experienced what it's like to have clinical depression. You do get a lot of people giving you advice but the thing is apart from cancer where people tell you to "stay positive" and you don't get people giving you much advice on your mental health unless it's "keep strong." It's weird because you could became compliant with a positive reply yourself "I'm fine." Sometimes it is better to deal with it yourself and as long as you're seeing someone for support, who is anyone to judge you! As long as you get the help out there, it should be your choice and a way that you feel most comfortable with. Everyone in the world will take things differently and you'll know what's right for you.

 Recently I thought it may upset me a lot more because like most people I had this idea of what a 'normal' life should look like, a path that consisted of having a good job, getting married and having children.The thought that my own family line would stop, just because I had chemotherapy/radiotherapy was a lot to take in and I thought losing my hair was traumatic!            
 I realised that sometimes when we expect our life to follow a certain path, it doesn't! We can see that illness can stop us going on that path and that can feel like our perfect world has ended. We forget all the other possible paths in life that could get us to the same place or even better. When being depressed or thinking negatively, we think the bad times are going to last forever but luckily they don't. Looking back at your worse moment you can see it can make you stronger or at an okay place which is fine. You could never imagine that better place mentally. Sometimes I can be okay but then it can flare up and people assume wrongly that its always about cancer.

"No matter where you are on your journey, that's exactly where you need to be. The next road is always ahead." - Oprah 

  I also have "survivor's guilt" when constantly seeing so many people die on a cancer ward who I had made friends with. I just felt so guilty being alive & sad even though it wasn't my fault, I kept overthinking how do some people survive & others don't. Not knowing why and the exact reason was really stressing me out because at the time I was emotionally finding it hard & traumatic because of everything I was seeing around me on the ward. It's such a sad thing to go through so young but really at any age. I know some people say it's part of life but it wasn't for me, it was traumatic. I was one of the youngest people on the ward and most patients were much older then me. I started to get flashbacks from all the most traumatic times for me and my nightmares felt so real and scary that I once, while sleeping shouted out many times "help me." As I awoke on a hospital ward a nurse asked me to not shout out but ring the bell next time but I was so embarrassed at the time I couldn't tell it was my P.S.T.D playing up and I was actually asleep because she would probably of thought I was awake shouting. I was so afraid that night, my darling Dad then came back to the hospital after he had already left leaving when visiting time was over at eight, he held my hand the whole night as the nightmares were so upsetting. I held his hand six years later when he died from cancer.







 Everyone will approach cancer/illness in their own way that feels most comfortable and right for them. When my Dad was diagnosed with Pancreatic Cancer on 29 August 2012 it was so surreal. He had kept it to himself until after the Opening ceremony of the Paralympics as I was preforming in the show. I was on the other side now, the relative of someone with cancer & the feeling of hopelessness that my parents had felt and there was nothing I could do to make it better for him, he didn't always do everything the same as I, when I was diagnosed with Bone Cancer. He kept saying "you beat cancer so can I, it's in the Genes" but he was diagnosed too late. It was so hard to deal with when you love someone so much.

  If anyone ever says what you're going through is the wrong way to do deal with it,  just remember you're your own person with your own identity, values, needs and you see the world your way, so there is never a right or wrong answer when you're diagnosed with any condition.

  When you think about P.T.S.D you normally think about our brave soldiers/veterans and what they've gone through while fighting abroad for us and the stress of what they've seen day in, day out. Anyone can get P.T.S.D through a traumatic experience in life. I suppose cancer doesn't always come to mind.

   Raising awareness of mental health issues with people who have/had cancer but also those in the forces who've been diagnosed or yet to be diagnosed with P.T.S.D. maybe at some point when I'm feeling well enough I can take a look at this issue.


 I sometimes feel because people are always pushing out messages to "be positive" to cancer patients. It made it much harder for me to deal with my emotions, my depression was rewiring my brain to think sad, negative thoughts and feelings which then made me feel guilty on top of it I couldn't think positive even though deep down I wanted to. It wasn't until I realised I had problems after getting diagnosed with Clinical Depression and P.T.S.D. I knew I wasn't going out of my way "to chose" to "think negative" like a lot of people think you do. It's much easier when someone understands about mental health or just willing to listen to why you feel a certain way.


                                           Source: Tagul


Clinical Depression definition - "the reaction to unfortunate life circumstances that is more intense or prolonged than would generally be expected." - Dictionary.com - http://bit.ly/1RiyJ4w

Post Traumatic Stress Disorder (P.T.S.D) definition - "a mental disorder, as battle fatigue, occurring after a traumatic event outside the range of usual human experience, and characterised by symptoms such as reliving the event, reduced involvement with others, and manifestations of autonomic arousal such as hyper-alertness and exaggerated startle response."  - Dictionary.com - http://bit.ly/1MMUdHJ



  You can't always 24/7 think positive as it's unnatural in everyday life. Look at the chart above for an example to show that you could wake up not feeling great because you've woke up late so feel negative. When you get to work you're given a promotion & so feel more positive. Later in the day you realise you've lost your wallet so feel really sad but then you find £5 so feel a little more positive. Unfortunately you drop the £5 by mistake & it falls down the drain which makes you think negative again. You later get home, see your loved ones so feel happy & feel positive as they've cheered you up before you go to sleep. 

 There was a funny thing that happened to my parents on the way to visit me in hospital one day. My dad was coming from the airport and my mum was coming from home. (they were separated for many years) My mum was waiting for a mini cab, reading a magazine when someone came in the cab office and the controller asked my mum if she would mind sharing the cab and as she looked up it was my dad! My mum joked "if I have to," the controller looked puzzled and my mum said he was her husband! My parents said they could hear him laughing when they got into the cab. We all had a good laugh when they got to the hospital to see me and my mum got my dad to pay for the cab. A positive memory that can last forever!




 I‘m more of a realist, I know my mood will go up and down during the day, not always dramatically but I won't be constantly positive because of things in life happening out of my control. With my depression I tend to not go to on cancer patient chat rooms where it states "no negativity here, all positive" which can be a big problem when you are not positive, then you feel left out sometimes as   I really want to talk to other cancer patients like myself.

 A lot of people don't like it when you talk about negative or sad things & would probably want you to change the subject or say "don‘t bring the mood down." Things like this in society make you think that it needs to be hidden, that it's bad and you need to stop talking about negativity because of how some people might judge you. That's the kind of thing in society that should change so someone depressed doesn't feel they can't bring up how they feel because of judgement or how they'l react but they shouldn't be ashamed to speak up! We should be more concerned how we view ourselves and our own self worth. 

 I remember in Ireland, my Irish side are culturally brought up not to discuss their 'problems' as it's seen as a bad thing to let everyone know your business (ironic though as everyone seems to know everyone's business lol) and I'm sure at a point it was the same for my British side but things like depression and mental health sometimes need a release. People shouldn't feel they can‘t talk to anyone. Mental health charity hotlines are a good thing because some people feel it's easier talking to a stranger who knows nothing about them.




 When you're a young adult and have invisible disabilities/conditions but look well on the outside to people they just presume you're well and sometimes stereotypes are easy to fall into, like a young adult if they're mostly in bed that they're "lazy" but not the fact they could be depressed or have chronic fatigue . I couldn't help notice that a lot of staff and people think if you look well you must
be. Imagine you have lost weight due to a illness & then people just see you've lost weight and say you look really well! Society is mostly interested in how we look than how we feel, so looking well can be very misleading when you're unwell mentally or physically inside.

 As a young woman I sometimes like to wear make up to make myself feel better. You're not depressed everyday so can look well one day but not the next but I started to find, that just confuses people as they can't even perceive that this young woman who looks well could be depressed. I once even had someone say in a discussion "you‘re not depressed, come on” like there's no reason you should feel depressed in their eyes. They forget to realise my brain isn't thinking properly at that moment like their brain and my thoughts are irrational.  

 It's an illness preventing you from being content or enjoying life. Sometimes to the outside world "you could have it all" so why are they depressed but that's not how mental health works, mental health issues are causing irrational thoughts making you feel you have a terrible life because your thoughts are making you see the worst in life. I felt depressed when I was in remission.
  What I find is a lot of health professionals say to me "You look Well," "You look great,"
(even when I'm not lol) it's like they're reading it from a script to say to everyone because even when I try to hint I don't feel well or not feeling great no one ever asks how do I feel or how are you dealing with stuff. 
The NHS is run off it's feet and you can't always see someone when you need to see them.





This is where I suggest you use Grassroots Suicide Prevention's app called #StayAlive (which is not a crisis service.) 



The Key features of the app include:

  • Quick access to national crisis support helplines.
  • A mini-safety plan that can be filled out by a person considering suicide.
  • A LifeBox to which the user can upload photos from their phone reminding them of their reasons to stay alive.
  • Strategies for staying safe from suicide.
  • How to help a person thinking about suicide.
  • Suicide myth-busting.
  • Research-based reasons for living.
  • Online support services and other helpful apps.
  • Suicide bereavement resources.
Stay Alive - Suicide Prevention

 It would be nice if  medical staff could let the doctor in charge know if they think a patient might be showing signs of depression so that the doctor is aware so they could be offered support but unfortunately I don't think nurses and other staff always pick up on signs of depression. When staff are run off their feet it's easy for a depressed patient to blend into the background and not make a fuss even though it's important to let staff know you're feeling depressed.

All patients in an ideal world should be treated holistically.



 No one tells you in the beginning of the cancer journey that here is a booklet that has all the numbers you can call when you need support especially mental health, while in hospital or in the community. Patients in remission should also have a survivor-ship booklet with numbers they may need and mental health support is very important because people assume for everyone in remission everything is okay but for some it can be far from it and when depression starts. It works best to approach patients at the beginning so at least they have a number to ring if they need it.
 I sometimes wish as a patient that I was given a pack at the beginning when in hospital that also had names and numbers if you needed to talk to for instance a psychologist, psychiatrist or mental health charity would be useful when you feel you can't ask your main doctor on hospital rounds with all the staff/medical students around or if not feeling comfortable or up to it.
 As nice as everyone is when you're on your own and all these health professionals, medical students are around your bed, it can start to feel overwhelming when you're depressed. You feel like you can't breathe because you feel you'll be judged and everyone will be looking at you once you mention you're not coping emotionally.
 When I‘m not depressed  I don't feel shy or overwhelmed by big hospital rounds but
when I feel depressed I feel like a total different person who finds it harder to cope especially if an inpatient for weeks/months. Being stuck in one place for too long like a hospital ward can be rather noisy when you just want it to be quiet. You can't really tell hospital staff you want to be left alone for a while when feeling depressed.




With mental health on top of other conditions it can feel like the walls are closing in on you & mentally I can't describe how that makes me feel. It's just terrible like your head is pounding and your head won't stop overthinking and worrying about things, which begins to get so stressful and mentally fatiguing to the point you can't concentrate.

"Think for yourself. Trust your own intuition. Another's mind isn't walking your journey, you are." - Scottie Waves

 Mental Health to me can sometimes be much harder because medical professionals and the public can't see it like an obvious broken arm or something visual & invisible disabilities/illnesses are hard for people to understand or to empathise with because most people have a preconceived idea of what a depressed person looks like. 





So if they don't see that "stereotypical" look, they're judging you on how you look, whether to them you're depressed or not. If you haven't been diagnosed and someone is judging you on how you look whether you're depressed or not then it's unlikely you'll be referred to a specialist. I tried to hide my depression with a smile so no one knew I was hurting a lot inside. 



        ©Carlywatts - Drawn especially for Coping with the Big C.


The Answer = they can all be depressed regardless the emotions they show. 

But what does a "depressed" person really look like? It can be subjective to each person and their beliefs but mental health can affect everyone, young/old, rich/poor, any ethnicity, backgrounds and it doesn't discriminate against anyone.

 Some people like myself hide their depression from most people and actually show the
opposite emotion of being happy because I don’t want to bring the mood down with others around me. It's like I'm wearing a face mask pretending I'm feeling a certain way like happy, depending where I am & who it is. 


 You're not always depressed everyday, you can be dealing with depression and have days
were the days aren't so bad, you could be smiling about something on that day you've
enjoyed and so people wouldn't even assume you're suffering from depression. Then the
next day your mood could totally change and decline rapidly and that's what makes it
so hard to deal with because it can sometimes go from one extreme to the other.
Society can bring us up to hold in our emotions, like "be strong" and in some cultures
men are seen as weak if they cry or show their emotions. They're told to be strong &
to "be a man" but I personally think that so doesn't make a man weak at all and a man
should go with how he feels whether that's holding emotions in or letting them out &
there shouldn't be a stigma! Suppressing emotions and feelings isn't always good &
sometimes it needs to be let out in some way. 














 My mum wanted to show me that our past is as important as our future and found out that we have heroes in our own family. My great great grandfather was in WW1 and he did not speak about his time fighting for his country. My mum found this article in the "South Western Star" from the home coming of two WW2 heroes and they belong to my family, (they were my great great uncles). Agnes who trained as a first aid nurse, had been injured in an air raid and we both in our lifetimes had to wear a brace on the spine.






The newspaper article was given by kind permission from the Wandsworth Heritage Service






Post Traumatic Stress Disorder (PTSD)

"A British psychologist, C.S. Myers, introduced the term ‘shell-shock’ during World War One. This condition is now widely known as post-traumatic stress disorder (Myers, 1915)." - The British Psychological Society


"The term 'shell shock' was coined in 1917 by a Medical Officer called Charles Myers. It was also known as "war neurosis", "combat stress" and Post Traumatic Stress Disorder (PTSD). By the end of the war, 20,000 men were still suffering from shell shock. Thousands more had experienced its symptoms during their military service."  - BBC Inside Out - Shell Shock



"From shell shock and war neurosis to posttraumatic stress disorder: a history of psychotraumatology."


"The term post traumatic stress disorder (PTSD) has become a household name since its first appearance in 1980 in the third edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-lll) published by the American Psychiatric Association, In the collective mind, this diagnosis is associated with the legacy of the Vietnam War disaster.
Earlier conflicts had given birth to terms, such as “soldier's heart, ” “shell shock,” and “war neurosis.” - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3181586/


 SOURCES: Post Traumatic Stress Disorder What Happens in the Brain? Sethanne Howard and Mark W. Crandall, MD US Naval Observatory, retired, Wash. DC Reisterstown, Maryland - Via - http://www.ptsduk.org/what-is-ptsd/

 I can totally understand how men in the forces might struggle and find it hard if being newly diagnosed with P.T.S.D as society throws about the idea of being "macho and strong" both physically and mentally, let alone dealing with the emotions that come with the condition.
Also it will be hard for women who get diagnosed with a mental health condition while in the military.
It's hard to deal with when people might stigmatise against them in their work life or that maybe their relationships may suffer too.
 I felt at the beginning my love life might suffer because men might judge me before they knew me. It's best not to rush into relationships until you feel both physically and mentally well, as it's hard enough to deal with your own emotions. Either way you'll know when you're ready. 
Remember it's an illness and not a choice we make to feel the way we do.

Unfortunately there is still a stigma around it and even harder if you feel you'll lose your job because of it. Like most mental health issues it can be hard at first to speak up about it because of the fear you'll be treated different. Especially if in the military when they're told you are meant to be the best of the best.
Through websites that support our forces, I've been able to make pen pals and talk to (obviously not including their names) men in the Royal Marines & British Army that have told me they have suffered from P.T.S.D to depression.


I think they felt comfortable talking to me because I was a stranger who didn't know their work mates, social circles and being a woman may of helped them to speak about it more because when I open up I chat a lot but also really listen to others and let them chat about how they're feeling.


When cancer patients are in remission, a lot of people assume for everyone at that point everything is fine now and life must be getting back to normal. For some like myself the destruction has just started from the depression and P.T.S.D. I'm sure it must be the same for some of those in the military who also are dealing with the same condition, when they come back from conflict everyone is so happy they're alive and safe that they may forget about how they're dealing with things inside emotionally. 


    Source: http://owwsoldiers.co.uk/


 The main thing they all said is even though it was hard dealing with those emotions, once they got help they started to find a way to cope better and had hope for finding a way out of the darkness of mental health.
The other big thing is before they told the other guys in the forces, they weren't sure how they'd react but once they told them, they've been the biggest support to them getting better again and being there if they need to chat. I told them on a day they don't feel like telling someone that I find writing your thoughts down whether like a private diary or just writing thoughts straight down helps get all your emotions out and clear your head when you're not ready to talk to someone. 

 Remember you don't have to broadcast you have a mental health condition to the world and it's always up to you who you tell. Always tell a person you know you can trust and who you feel comfortable with. If you're not sure about telling your employer in the military, Jason Fox from #SASWhoDaresWins said reach out to guys like him privately and charities like Rock 2 Recovery with Jamie Sanderson who can give you advice about getting support and keeping your job regardless of your mental health issues. Combat Stress is another good charity to contact.

https://twitter.com/RegainMH


                                       
Quotes from male veterans who have PTSD:

"I used to wake up & walk around camp in a rage wanting to hurt people in the middle
of the night. Other times I used to shut myself away and just want to be on my own.
These days I still get shakes and sometimes if I'm out shopping I have to take myself
outside because I feel trapped and have to get fresh air." — (Anon) Ex Army Veteran UK



"Unexplained anxiety! Cry randomly! Flashbacks! Over the top anger bursts triggered
by minor incidents are." 
 (Anon) Ex Forces Veteran UK

"PTSD is an inner war. Not an external war than what we are used to. Winning this war
can happen if you win the constant battles." — (Anthony F.) Marine Corps Combat Veteran USA — @Sickness81 on Instagram

^ Thank you to the three male veterans above who nicely offered to give a quote for this blog post. ^


  


#SASWHODARESWINS 


 Last year on Channel 4 I saw an advert about a programme called "SAS Who Dares Wins." This programme is where ex-Special Forces soldiers recreate the SAS's secret selection process and put 30 civilian men through it, to see if they have the nerve to complete it.
Everyone who knows me, knows I love anything military related or about military history. Straight away I had put the show on a reminder way before it was even on. I checked the hashtag on twitter #SASWhoDaresWins to see what other's were saying about the programme and since then a mini #SASWhoDaresWins community was created!
Before a certain episode aired I had asked Jason 'Foxy' Fox (one of the Directing Staff on the programme) if he knew of anyone who had PTSD as I was doing a blog post about it and he nicely said he could help me as he had it. The day after, the episode shows Foxy talking on TV about his PTSD. I thought this was such a great thing for him to do as not many programmes on TV always talk about mental health within the military community. Plus it shows those in the military and everyone else it's okay to not be okay.

Below is the interview I did with Jason Fox. (Thanks Foxy!)



#IAMOLDSOLDIER #PTSDENIED




The guys will be rowing in aid of the charity NSPCC on the first week of February. If you wish to donate to this great cause, you can go to their 
Virgin Giving page at - bit.ly/1jNtEXI

Or text… 

Check them out - http://break-point.co.uk/





Donate on:




©PaulMorgan

Artist: Paul Morgan - www.twitter.com/MorgsUK7




 It‘s good to see programmes on TV specifically about mental health like the TV show that was on BBC three a little while ago with Professor Green called "Suicide and Me." Professor Green talks about how his Dad committed suicide as a young man & tries to understand why his Dad got to that point and the 'what if' moments while looking back on the past. Green looks at places that are trying to help those who feel suicidal, like this house that he visits where they use a normal looking house for people to drop by and relax or just chat if they want to. 



 We need to support the men in our society to the point where suicide is NOT an option
(easier said than done) and help them express their feelings & thoughts in a
comfortable way for them. If you need help or support for yourself or a loved one, I'll
leave some charity websites that may help below.
Community mental health needs to be connected with other services much more and they
need to try and follow up on people in case their depression has got worse and they
haven't told anyone or else they'll get lost in the system. 







This article below shows just how important children's mental health needs to be taken too by everyone in society:

   Source: Metro

  A lot of the time children and young adults don't get a look in when it comes to mental health. Sometimes I can tell that some people don't put mental health and young people together. Some people might think young kids are just playing around and being naughty but sometimes you have to look beyond that to find a reason sometimes why out the blue they've changed their behavior.  

Childline

NSPCC







Child and Adolescent Mental Health Services (CAMHS):


Unfortunately mental health isn't funded well and you're more likely to see cuts in this area then physical health but I believe both are as important as each other.


Fixers charity report on young people's mental health: 
http://www.fixers.org.uk/UserFiles/Files/p_Ohq1CH.pdf


Kings Fund - (Improving Mental Health outcomes for children & young people): 





   
Mental health problems can happen at any point even without cancer or something
most people see as "the worst thing in the world."



I believe cancer and mental health services need to be combined so cancer patients can receive mental health support from day one, as some will need to talk to someone straight away and others later down the line. Whether supporting them from the beginning or when they feel ready, it might help them cope better with these roller-coaster of emotions. It might be useful for some to use things like mindfulness, cognitive behavioral therapy (CBT - talking therapy), exercise. eating well, "Creative Therapy - An Anti-Stress Colouring Book" which helps you to stop concentrating on all those thoughts you have on over drive (art therapy), acupuncture. reflexology, massage, yoga or simply doing things you personally enjoy to try and break the cycle of the depression. Walking the dog to get yourself out the house to get fresh air and exercise, I need to get out the house more myself and maybe in the garden with the dog when feeling well. I want to break the cycle of my fatigue and depression which is making me sleep a lot and also my pain from different places will make me bed bound/house bound. My mum who is also my carer looks after the dog and even though I can't walk far without being in pain, I'd really like to aim to get out and about to the park with my mum and our dog even if I use the wheelchair as it will help me hopefully get into a routine, so getting out the house will hopefully not feel like quite a struggle anymore. I want to push myself to do more even though these side effects years later from the treatment makes me unwell. I‘d love to feel a sense of normality again and to be able to spend time with friends more often whether meeting up for lunch or going to the pub, going to more cancer events, charity events to learn more and meet more people in the same situation and most important being able to blog more often without feeling it's a battle. Remember with things you don't complete, do not see this as a "failure" but rather something on your "to do list," that way you won't be annoyed with yourself as much. 



  A while ago I went to the Royal London Hospital for Integrated Medicine (also known as the Royal London Homeopathic Hospital) to get acupuncture to see if it would help improve my severe pain and hot flushes from menopause etc. The lady who does the acupuncture is an ex Nurse and noticed overtime from what I was saying that I was feeling depressed. My acupuncturist was the first healthcare professional ever to notice and thought about my overall health (importantly mental health) and not just my physical health etc like conventional medicine usually focuses on. 







Things I use for my depression and PTSD:

- Medication helps me a lot
- Cognitive Behavioral Therapy (talking therapy)
- Art (art therapy)
- Music (upbeat & happy music)
- Acupuncture (helps me get into a relaxing and calm mood)
- Reflexology (usually on offer during cancer treatment)
- Massage (usually offered during cancer treatment)
- Cancer charity holidays and day outs
- Healthy eating as long as not feeling unwell otherwise because of stomach condition,
   can't eat as it hurts                                                                                              
- Look Good Feel Better (beauty cancer charity helps give you some self esteem when you're feeling you look your worst because of all the cancer treatment) 
- Diary (writing thoughts down or doing a blog post)
- Friends & family (socialising and meeting up or letting them know how I feel
   especially to my mum and friends) 




Things I'd like to do in the future if I can (as I personally think it's always good to aim for new goals): 

- Exercise (preferably swimming and light weights)
- Adult art therapy
- Mindfulness
- Walking my dog or in wheelchair when unwell going out with my mum and dog to get
   out the house

- Yoga
- Continue Cognitive Behavioral Therapy
- Start volunteering again if I get well enough as it has positives effects on your mental health and gives you more confidence, self esteem and self worth again

 My catch 22 is all my other medical conditions are making me feel chronically fatigued every day. In severe pain in different parts of my body from back and leg pain (sciatica and nerve pain, pain related to benign/cancer pain. Also stomach pain that doctor's are trying to figure out what it is. I've had lots of tests recently to see what could have caused it and whether radiotherapy played a part as it went through my stomach at the time to get to sacrum area (lower spine) for osteosarcoma. Two surgeons were needed to take out the benign tumour, one surgeon took the tumour out from my back and then they turned me over and took it out from the front (stomach area). When it changed into cancer they couldn't take it out.



'You are never too old to set another goal or to dream a new dream.’ 
—  C. S. Lewis 


In a 'perfect world' I would like to be able to do this in the future: 

- Walk my dog
- Go swimming 
- Do light weights
- Try yoga 
- Go out more doing social things with my friends (during the day or night)
- Going to more cancer events


©Carlywatts 
Drawn especially for Coping with the Big C.


  I've felt that since Coco (my small dog) came into our lives about 4 years ago, she has helped me immensely with my emotional health.


Just seeing my dog Coco's face beam with happiness when she waits for me to wake up, she follows my mum when she brings me my medication, she makes me so happy especially when she does something to make me laugh and is definitely good for my mental health. Coco takes my mind off my problems, for that moment in time.

Your dog just wants to make you happy & unlike people, pets don't talk back. Saying that. Coco snorts very loud when she wants something which makes me laugh. With a pet you don't get that stress you sometimes get with people. Your dog won't judge you for your mental health, how you look or how you are feeling (even though they love to cheer you up if they think you're sad or unwell) and sometimes when feeling depressed it's nice to have that as it's like a comfort feeling.
Being unwell a lot I sleep a lot and if on my bed or couch my pet dog Coco loves sleeping
on my legs and that warmth feeling of that little cute body helps me to feel calm & relaxed. My dog seems to always know when I'm feeling down or unwell & it's just so sweet as she tries to make me feel happy plus always tries to lick my face to the point she makes me laugh so much. Pets give you that good feel factor that just helps brighten your day up


 Just look at the joy this older woman patient gets when a Therapaws Dog visits her at UCLH! Something as simple as bringing a little dog in can have such a therapeutic effect especially if you‘re a patient whose constantly bed bound and doesn't get to go out of the ward. When visiting another hospital near Great Ormond Street Hospital, I met a lady who works by bringing her dog in to see the young kids. I'm sure it's a nice surprise for them too and a change from day to day life in the ward.   It's a therapy that can help break your day up and cheer you up. 



Other Dog Charities that will be good for your Mental Health:



  Pictures of people can be misleading both physically and mentally in social media and in general. When you think someone has the perfect life, whether a man or a woman who is looking great & pretty or fit for a guy who is handsome, who you think has it all but for all you know they could be struggling mentally to cope or extremely fatigued not long after the picture was taken.

Source: Emm Roy

Art and art therapy 

When you leave school, art seems to go out the window but when cancer enters your life you need to find a way of expressing yourself.  In 2008 on the Oncology ward at UCLH a lovely lady called Lizzie Burns, Artist for the UCLH Sarcoma Unit introduced me to art again. I felt that art really helped, as I could express my feelings through it.
I wasn't ready to talk or do talking therapies at that point in time. Doing art while in hospital kept my mind busy and occupied instead of over thinking everything all the time. I even use to bring my art home because I got into my art so much that I was really passionate about finishing it to a good standard and expressing my thoughts while going through cancer treatment at UCLH.
I‘m so thankful to UCLH offering this while I was a young adult on the adult ward. The Teenage Cancer Trust ward did not cater for my age at the time and so art was a great thing for my mental health at the time as it helped take my mind off everything and focus on something happy and also I was passionate about being creative and did poems too at the time. When I look back at them, I could see all the pain 
inside coming out through the poems/writing and I expressed my feelings through art as well.

Below is the cancer poem booklet I compiled called Coping with the Big C:



I would love, when I feel better to do a version for veterans to express themselves through poems or art similar to the booklet above.

"Never underestimate your ability to make someone's life better - even if you never know it." (Greg Louganis)

"Creative  expression is helpful to healthy human development and recovery from mental distress. Formal arts therapies for people with mental health problems aim to help people draw on their inner, creative resources while exploring personal issues with a trained arts therapist in a safe, contained space, in order to achieve psychological change.
International and UK research has found that many people with mental health problems find arts therapies helpful, either on their own or as part of a range of therapies, which may include medication and talking treatments." - http://www.mentalhealth.org.uk/help-information/mental-health-a-z/A/arts-therapies/



 On twitter I came across the fabulous work of Walking with the Wounded and went on their website to discover some fantastic poems recreated in a modern way to show the impacts of war. I really like the artwork below as it gives you just a small elispe what those men must have to live with inside their head with those thoughts everyday. 


Please check the poems below:  

#VETERANPOETRY



 I love all the art and photography Rock 2 Recovery uses in it's awareness campaigns and to help others. I also believe any type of art can help those with an illness or mental health condition, I think it's great they write songs too which you can buy and the money going back into Rock 2 Recovery.   




 Rock 2 Recovery took part in the recent mental health campaign that went viral and you use the hashtag #itaffectsme to show if mental health has affected you and to raise the much needed awareness. #itaffectsme was started by the lovely Laura Darrall



                                  



James use to be @fallujahfog on instagram.

"Fallujah is in Iraq and is a city in in the Iraqi province of Al Anbarocated roughly 69 kilometers (43 mi) west of Baghdad on the Euphrates." - https://en.wikipedia.org/wiki/Fallujah

 I got to know James through instagram after someone recommended his art and poems in relation to his PTSD. I absolutely love the creation of his work and how much effort he puts into it artistically. James' work is very thought provoking in relation to his experience of war and how it made him feel. 
Please take a look at some his creative poems below:



(Book Seller above at UCLH) and this is where I bought my Anti Stress Colouring
Book for Adults and A Mindfulness Colouring Book.)

While at UCLH there was someone selling books in the main hospital and I actually came across those "creative therapy — an anti stress colouring book" and a "mindfulness colouring book — Colour yourself calm" for adults and I couldn't resist buying both as they were only £4 each. Normally before depression and illness I wouldn't have bought any of these books but I really think something like this will help me stop overthinking. Sometimes you need absolutely nothing to focus on and this adult colouring book helps. I understand it's not for everyone but I find arty things help me.  



 My lovely mum bought me this little book above on mindfulness with useful tips and
sayings which I'm going to use as soon as I'm less fatigued. By the way you can
get free information on mindfulness on many free apps and I've come across many on
the App Store on Apple but the internet must also have a good range of free stuff available
too on mindfulness. One of my friends actually uses a free app on mindfulness & uses it
each day. She said she especially uses when her work gets too stressful.
On the internet I came across Marylou's artwork where she said people who have
survived cancer or anything in life can print this picture out below and colour in. (Link below) It
will have the same effect as the anti stress colouring in book & help you relax as you're not
doing anything too stressful.


Link: http://www.mfalstreau.com/Survivor_Coloring_Page.pdf

Marylou Falstreau has "My Women and the Hourglass coloring book" now in
production and should receive her first shipment very soon. 


You can find Marylou‘s artwork at her website:



    (At Macmillan Cancer Centre) 


Music and Music therapy

What I love that UCLH do is within their main hospital and their Macmillan Cancer Centre they have professional musicians play different instruments from time to time in the waiting area's.
I can't tell you how much this soothing effect has on me and others when waiting for my appointment or waiting for hospital transport to go home. When in pain I can just focus my mind on listening to this beautiful music being played or simply enjoy it when having a good day.
When you're unwell whether with cancer or long term health conditions it always good to have something to take your mind off the pain and this lovely music does just that & it's also nice for carers and staff. Such a nice pleasant atmosphere.
I always see young and older people smiling when they see the musicians playing. You always see someone clap to thank the musicians'.
This simple act of playing music helps to put a smile on everyone's face.


UCH Cancer Fund told me on Twitter that some of their benefactors are:


"@UCHCancerFund: @LoveEirelieva we are lucky to many benefactors who support us
directly with music @uclh including Andor and Concordia Foundation" 

What is nice, is that a little while ago someone I went to school with emailed my blog email & said she saw my tweet in the morning and she works for Concordia Foundation that helps bring music to UCLH! Imagine the odds. It was such a sweet email to receive especially as she's such a nice person and told me about some music events they do, that I'm hoping to attend. 

Concordia Foundation - Concordiafoundation.com
"The Concordia Foundation was founded by international singer and broadcaster
Gillian Humphreys OBE. Perform public recitals at Chelsea and Westminster hospital
and University College London Hospital and work with patients on their wards."

Attending  an  appointment, I met the lovely Bethan Semmens who was the
Harpist playing at UCLH that day. Bethan, kindly let me take her picture & video her. Thank you! I explained I wanted to show my followers the beautiful music we are treated to at hospital. Bethan is associated with Live Music Now who train musicians to deliver music to a variety of people including those in hospital. 


             (At UCLH main hospital) 







"Live Music Now's distinctive approach has been developed over 55 years. realising the
vision of our founders. Yehudi Menuhin and Ian Stoutzker. We Support inspirational
professional musicians to use their talents for the benefit of those who are
otherwise excluded from the joy of experiencing live music." 








Examples of charities that help make you feel better especially mentally below:


Youth Cancer Trust

"Youth Cancer Trust was established in October 1997 by John Scott OBE and Brenda
Clark. The house was named in memory of Brenda's daughter Tracy Ann who died aged 21
from cancer. During Tracy‘s illness there was nowhere she could go to be with
others of a similar age going through a similar experience. "Tracy Ann House" is run
today by Brenda and a team of dedicated helpers" - Youth Cancer Trust


 The most recent cancer trip I went on was to the "Youth Cancer Trust" in Bournemouth where I stayed in "Tracy Ann House". It was so nice to escape the city for a while. I loved simple things like being near the sea and meeting new people.
 It was a relaxed approach & they let us choose as a group what we wanted to do for the week together. I really enjoyed myself and actually got some sun & vitamin D for once! I loved the art room and a room if you wanted to do a manicure as well as a TV room, pool table and karaoke machine! 








Ellen MacArthur Cancer Trust - (I went on this trip a few years ago):



"Dame Ellen MacArthur DBE' — MacArthur is a Successful Solo long distance yachtswoman.
On 7 February 2005 she broke the world record for the fastest solo circumnavigation of the globe, a feat which gained her international renown."
— httpS://en.mwikipedia.org/wiki/Ellen_MacArthur

 Dame Ellen MacArthur set up the Ellen MacArthur Cancer Trust. 
I've been sailing twice with Ellen MacArthur Cancer Trust and I absolutely loved it! People like myself who cant move around as much physically, they did the best thing by not excluding us, if you get too fatigued you can always sleep downstairs while they sailed (which I did lol.) I liked this because I felt they weren't putting too much pressure on me and gave me support and empowerment to complete the things I could do on these sailing trips. Being in such closed company with other young adults, it can be easier to talk to each other about your worries.
One trip I did, there was a really nice skipper who was ex-Royal Navy and he was such a nice man
and made the trip fun for all us young adults. Everyone who sails will get to meet Ellen and have an opportunity to take lots of photos.

 I liked with EMCT that it was getting us out in the crisp fresh air and doing some kind of
small exercise for us moving all the time and helping them sail takes a lot of energy but the adrenaline kicks in and staff help take your mind off the fatigue for a bit by getting you involved & helping out. 




Spero for cancer (Cancer App)

Rowan was diagnosed with cancer the day after Christmas and a couple of months
before his 13th birthday. Rowan was diagnosed with a rare cancer called Ewing's Sarcoma which is a Bone Cancer. Rowan's cancer unfortunately came back when he was in high school but thankfully he is now in remission. 
Rowan is CEO of Spero for cancer.
Both Rowan and Alex are Co Founders of the App. Spero for cancer is a new App on the App Store on Apple.   
I was one of the first beta testers to see what it was like. I first got to know about Spero for cancer (formally Cancer Spot) through the "Jedi" of the cancer community Chris Lewis. 


 Thanks Chris for introducing me to these two lovely American guys from California, Rowan and Alex through Twitter!
 A little while ago I met them for coffee and a chit chat about cancer and any ideas I had for them regarding their cancer app. I also helped them by sharing my networking circles within the cancer community and getting cancer patients who wanted to be involved with "Spero for cancer".                

I think this was exactly what the cancer world was missing especially when most charities have a cut off age limit. With the app I get to make connections with people who have/had cancer but also
supporters and people without cancer from across the world and all different ages. You can chat to each other about a variety of different topics, whether mentioning cancer or not.


   The psychologist I have seen in the past, doesn't patronise or judge, but
listens, offers supporting ideas on how to help make myself feel better plus he is Irish. I'm actually going back to see him again soon so hopefully he'll get me back on track. 


  Just remember whoever you are, YOU can start again at anytime to rebuild your life. That gives me motivation that as soon as I feel well enough or at a good place I can get back to simply living life and doing what I'm passionate about while enjoying more time with my great supportive family and friends. 


Remember tomorrow is a new day to start again and there is always time to change your mindset in life after you've got the help and support you needed, to be able to start to think and feel positive about life again.


Getting Closure (not necessarily getting rid of the problem but dealing with it and moving on.) Just like Rock 2 Recovery, you Focus on what the problem is. Learn to deal with it then Refocus on your hobbies/passions and enjoy life again. Then inspire others to do the same.
It's never too late to ask for help for whatever you're going through. 

 Everybody needs a little help sometimes but never be too proud to ask for help as there's no shame in it and it doesn't make you weak ever.
I know it's easier said then done but please reach out if you need someone to help you get back to being yourself and enjoying life again. Talk to someone you trust if you feel you're not coping well or your mental health is getting worse and I'll leave contact details below of mental health charities you can contact if you'd prefer a stranger.

"You wake up every morning to fight the same demons that left you so tired the night before, and that, my love, is bravery." - Anon

Have you dealt with Depression or PTSD since getting cancer?

Was there enough support from medical professionals for you?

Was there enough support from medical professionals in the community for you?

Did you have to wait a long time to see someone about your depression?

Did you have a positive experience?

Did you have experience of PTSD related to being in the military? 







**This blog post is dedicated to my Dad, my hero. Yesterday was his second anniversary of passing away from Pancreatic Cancer.**



                                  ©jasonbrooks - drawn especially for Coping with the Big C.




Living with remission but having hope for the future....




Please leave your thoughts and comments below! Thank you! :) 





**Some great sources below for info & organisations/charities that help.**


References: 


Cancer:



Trekstock - thrive cancer support (There are more than 100,000 young adults living with cancer in the UK today. They lack support because little is known about the challenges they face and few services are dedicated to them. Trekstock is committed to understanding and supporting their needs, so that no young adult has to face cancer alone.)


Dr Alex J Mitchell recommended links on cancer and mental health:

Cancer Stories

http://www.psycho-oncology.info/

http://www.psycho-oncology.info/MDThesis (A J Mitchell)

MD Thesis - Implementation of Rapid Screening for Depression and Emotional Distress in Cancer (A J Mitchell)

Improving psychological cancer care for patients

American Psychosocial Oncology Society

I Had Cancer - Cancer Support Community






Mental Health:

Samaritans

Clasp charity - We are Counselling Life Advice Suicide Prevention Charity also known as, CLASP Charity

Equality 4 mental health

Innovation labs - Better mental health for young people

Doc Ready - Mental Health

Time 4 recovery - Mental Health


(MindED) e-learning to support young healthy minds


Depression: Asking the right questions

Oxford Academic Health Social Network - Mental Health

Achieving Better Access to Mental Health Services by 2020 - Department of Health (NHS England)

Talking Therapies for Mental Health Problems: Statistics (Parliament)

The British Psychological Society

Mind - tackling negative thoughts with distraction

NHS Choices - Mindfulness for mental wellbeing

Mental Health Foundation - Mindfulness

UK Armed Forces Mental Health quarterly statistics financial year- 2015/16

Independent - children waiting six months to be assessed for a mental health conditions after referral

Mental Health Foundation

Mental Health Foundation - Armed forces and mental health

Mind Science - Mental Health

Depression Alliance

Depression Quest

Mind Yourself - Promoting happier and healthier lives among Irish people in London, and enjoying doing it...Always room for one more.

The Campaign to End Loneliness believes that nobody who wants company should be without it and that the third age can be the best age.

Young Minds - The voice for young people's mental health and wellbeing

Shelter - The housing and homelessness charity - Homeless ex-forces

Sane - mental health support forum

Rethink Mental Illness - Leading the way to a better life for everyone affected by mental illness.

www.bemindful.co.uk

Big White Wall

CALM - Campaign Against Living Miserably




Military charities:

www.Rock2Recovery.co.uk

South West Veterans' Mental Health Service

Horseback UK

Veterans Aid - mental health

Adam's hoofing hut

Save our soldier

Combat Stress - The Veterans' Mental Health Charity

Wounded Warrior Project (USA) - PTSD




MilitaryVeterans' care in the UK




PTSD:


Talking2Minds was established in 2008 with the sole purpose of helping those suffering from PTSD or other severe stress related conditions

#PTSDCHAT





PTSD UK

Combat PTSD Angels

Mind - Understanding PTSD

NHS Choices - Post traumatic stress disorder

The Phoenix PTSD Garden

Veterans PTSD Support Group (USA)

PTSD Recovery. Resolutions, Solutions and Practical Recovery Help

A new independent Charity-Support Group specialising in PTSD for Emergency Services

About Face - USA Military PTSD

Military with PTSD - HELPING FAMILIES CONNECT DESPITE PTSD (USA)

PTSD Army

Military Minds INC - PTSD Awareness


Art: 

Create Arts


Paintings in hospitals




The Foundation for Art and Healing - Art and Healing PTSD
Creative arts therapy can help veterans (USA)

Making Art Personal - Cancer Support Community






Exercise/Outdoors and Mental Health:

The SAS session aims to boost your self esteem to do more, enjoy more and feel better, also it is hoped that you will increase your confidence to access mainstream swimming sessions in the future."
















Example of free App Apple: Colorfy itunes app














"Join the Once We Were Soldiers community. Our purpose is to provide accommodation, financial advice and support for health issues including PTSD to homeless veterans of the British Armed Forces. The number of military personnel now suffering with PTSD or other mental health conditions are rising rapidly. Many veterans find themselves homeless, with no hope, no support and through no fault of their own. They turn to alcohol or drugs or both to help them through each day, to block out the horrors they have persistent flashbacks of." - www.owwsoldiers.co.uk






Time To Talk Day will be on the 4th February 2016 - http://www.time-to-change.org.uk/



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3 comments

  1. After 2 of my brothers took own lives. After over a decade of fighting stupid diagnosis. Now changed to PTSD. I live like a prisoner. Deppresion is very personal and unpleasant . 💔💔💔

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