Mental Health Awareness Week 2018

Today marks the beginning of Mental Health Awareness Week 2018 (14-20 May) and we want to use it as a platform to talk about the interaction between cancer and mental health. Last month a survey from the Mental Health Foundation revealed that one in three people with cancer will experience a mental health problem such as depression or anxiety disorders before, during or after treatment. 

We reached out to our lovely bowel cancer community to see what they have to say about how cancer has impacted their mental health, whether they were offered enough (or the right) support and what their advice is for anyone else going through life with or life after cancer. 

Do you think you’re offered enough support for the psychological impact of cancer? 

"As a relative no, definitely not. Obviously the focus is on the patient and informing them about treatment etc, and whilst myself amd other family members were kept informed about this as either me or my brother accompanied Mum, no-one at these appointments actually asked us how we were coping. I had some people ask me at work but not many. I did have some counselling sessions though that I arranged through work which was of some benefit."

What tips do you have to cope when things get too much? 

"We are a very close family and we support each other when faced with issues such as this by talking about whatever might be affecting us. 

"I have been involved in the live music scene for a couple of years by attending Open Mic nights, that has definitely helped me cope. Playing live music is very enjoyable and therapeutic, and you also get to meet people of various backgrounds, some of which have been affected by cancer and they also offer their own coping mechanisms."

How has cancer affected your mental health?

"When I had the first appointment with the Consultant Surgeon, he confirmed that not only did I have bowel cancer. (which was expected), but that the cancer had spread to my liver. The 'How did I miss this?' feeling was very hard to cope with, and I don't remember any offer of help or counselling for either myself or any close family members. The focus was on getting rid of the tumours as soon as possible, and any further treatment that would be needed."

Do you think you’re offered enough support for the psychological impact of cancer?

"I think that the general public really need to be informed about the side effects of chemotherapy treatment, that, although some patients do suffer some awful side effects, not everyone is nauseous or laying around all day. We found that before treatment, the phone didn't stop ringing and it was quite hard for me to find time to see everyone, but as soon as treatment started, almost everyone disappeared. Although, of course, family life can change dramatically during treatment, this misconception can cause the patient to feel very isolated and perhaps feel that they have brought the illness on themselves. It must also be hard for their immediate family, who are trying to support them throughout treatment and encourage them to live as normal a life as possible. I used to comment that I had cancer, not the plague!"

What tips do you have to cope when things get too much?

"This is a tricky one for me to answer as no two people would react in the same way. I tried to go out as often as I could, even if it was only to have a coffee or walk round the local shops. If I wasn't able to go out, I tried to keep myself busy by doing crosswords and concentrating on hobbies, (card making, crochet, reading, etc.). I think it is very important to have something positive to focus on and not to just sit and think about what you are going through, although this is so very hard at times I know. Also, try to remember that EVERYONE is on your side, medical teams, family, etc, although again this can be hard going!"

How has cancer affected your mental health?

"As soon as I heard the words “You have bowel cancer” my mind and thought process went into panic mode.

The shock of hearing those words was so intense – it’s a terrible feeling. Even now, it’s hard to describe how I felt that day. For several days after my diagnosis, all I could think of is “I’ve got cancer!”. I went to my GP, he gave me some sleeping tablets, but luckily I only felt the need to take them for about four or five days.

At the time of my diagnosis, I knew very little about bowel cancer. During my first colonoscopy appointment, approximately two weeks after my initial diagnosis, a nurse said to me “The good thing about bowel cancer is that it can be treated”. Her words were music to my ears! Until that moment, it didn’t occur to me that I would ‘get better’ or even survive bowel cancer. Even though I had this tumour thing growing inside my body, I began to relax and feel calmer.

After a few days, I realised that telling my friends and family that I had bowel cancer actually helped me come to terms with my condition. I was also comforted when friends shared their cancer experience. of having a relative or family member who had also been diagnosed with some form of cancer. The more I talked about my bowel cancer the more I relaxed.

At each consultation with my Consultant and Oncology doctor, I was able to ask all sorts of questions about bowel cancer, my treatment, surgery. After each appointment, I became more relaxed because I was no longer feeling anxious and I was gaining knowledge and learning more about bowel cancer.

I had decided that I would be going on a ‘journey’ with my cancer, rather that ‘fighting’ cancer. I saw a fight as a battle and more stressful. I called it a journey because it would take me in different directions, with a few bumps along the way – eventually my journey would come to an end. Fortunately for me – at the end of my journey was a rainbow of good health and an ‘all clear’.

I have learnt that with bowel cancer, and probably any form of cancer, it’s important to be able to release emotions without feeling embarrassed or guilty. I also learnt that talking about my cancer helped me come to terms with it. Talking about my stoma helped me accept my change in bowel habit and diet.

Being diagnosed with bowel cancer did affect my mental health but mainly in a positive way."

Do you think you’re offered enough support for the psychological impact of cancer?

"As my bowel cancer journey began on 25 April 2016, I didn’t realise how many people would be involved in my treatment, surgery and recovery. I have met so many people who have helped me. The support that I have had has been a major contributing factor to my recovery and to where I am today.

I have had support from my Consultant, my oncology doctors, the Macmillan nurses, the stoma nurses, ward staff and fellow bowel cancer patients. Knowing that I was able to contact these teams and people at any time if I had any concerns was so valuable. The environment at my hospital was so friendly and supportive which is so reassuring and important to cancer patients."

What tips do you have to cope when things get too much?

"For a bowel cancer patient – when things get too much I would say:

• Remind yourself how well you have done on your journey so far.
• Talk to your family and friends as often as you can about your bowel cancer and how you feel, talk about your progress and your goals. (This really made me feel more positive about my cancer, my recovery and ultimately, getting the ‘all clear’)
• You’re not alone – talk to other bowel cancer patients, share your experience - this should help lift your spirits. Everyone’s journey is different.
• If you’re struggling with your diagnosis, treatment etc – join a local bowel cancer/stoma group – hearing other peoples experience and sharing yours will help and you’ll make new friends.
• List any questions or concerns that you have regarding bowel cancer, treatment/surgery. Discuss them at your next appointment. Staff don’t mind at all and it will put your mind at rest. Make sure you have the contact number for Oncology/Macmillan/Stoma nurses. 
• If you’re informed that you have to have a stoma, try not to feel embarrassed at the thought. It doesn’t have to be a bad experience. A stoma nurse once said to me “In a busy high street of any town, you can’t tell who has a stoma and who hasn’t!” Her words immediately made me feel less self conscious about my stoma.

Read Jackie's full story here

How has cancer affected your mental health?

"Being diagnosed with cancer has left me feeling low at times, I’ve also struggled with getting my confidence back in my body and coming to terms with my diagnosis." 

Do you think you’re offered enough support for the psychological impact of cancer?

"I wasn’t initially offered any psychological support which would have really benefited me. I took it upon myself to seek out some support two months after my diagnosis, originally to the GP who advised me to contact Macmillan. I have since had a few sessions with a counsellor."

What tips do you have to cope when things get too much?

"Understanding your mental health and the mental journey that you go through following any big event in your life helps initially. I found that talking to a counsellor helped me understand that my physical actions directly affected me mentally. This meant that if I overdid it physically then I might feel low the following day, similarly if I was feeling low, going for a walk and holding my head up high might help me feel better. She explained that a cancer diagnosis was similar to a radio: on the day of diagnosis it would be perfectly in tune and at full volume, whereas other days it would just be in the background."