Patient Perspective – Mental Health

In this latest blog from our patient blogger Vickie, she discusses the impact a leukaemia diagnosis can have on your mental health.

When I was first diagnosed, my family and friends were all shocked; they didn’t really know what to say. Telling my parents was the most horrible thing, as my husband was already with me.

I remember leaving the hospital in total disbelief. My second support, on that day, was Leukaemia Care. They had a stall at the hospital I go to. I was in and out of listening, but my husband heard everything. They gave me leaflets, spoke with me and offered support, which was great.

Once my family and friends all knew, they didn’t really know what to say or do. However, some of them did say that if I ever needed any support, just to ask them and they would lend an ear or shoulder for me to cry on.

At that time, my mental health was OK. I had so many hospital appointments as I was 21 weeks pregnant when I first found out I had cancer. Plus, running around after my 3-year-old son, I was always on the go.

I have had my cancer for nine years now. In that nine years, my life has never been normal. Always wondering if you are going to be OK, even though everything is in a good place at the moment. You always have that in the back of your mind.

I have never had any type of counselling for this at all. I just go to the hospital, have my bloods taken, have a little chat and then go home. My doctor is great, but I felt and still feel – nine years on – lost. Why me?

As time goes on, people tend to forget what you have and don’t really ask how you are doing anymore. I even find that with the hospital. I think because you have been going for so long, they think you are OK with everything.

Well, no, you’re not. I have side effects from my tablets and every day is different for me and the people around me. I always think, this time next year this could be worse. Will I still be here next year? My brain over the years hasn’t got any better with blocking out these thoughts. In fact, I have just been diagnosed with depression and anxiety. My doctor has said this is all to do with my cancer. I have not very good thoughts at times.

Even though I have the support of my family and friends, it’s not enough. It’s very hard for them as well, but they don’t get it. Mental health is a big issue, and so is dealing with cancer alone. I would like to see more support from doctors and hospitals, not just for new patients but for patients who have this for years and years. We shouldn’t be forgotten about just because we have had it for so long. This doesn’t mean we are OK, because we are not. The doctors should ask how we are feeling, how we are coping.

Please don’t try and put things off if you are feeling very low, upset, alone, or lost. Please speak with your family and friends and, if you cannot, there is help out there. Ask your doctor.

Fighting mental health is nothing to be embarrassed about. I did say to my doctor that I was embarrassed and felt silly about it, but she said, ‘Please, that’s what we are here for.’

I am so glad I visited my local GP. It’s the best thing I have done, but I wish I didn’t leave it for so long. She has advised looking into mindfulness and possibly counselling, and not to worry too much about my cancer. The doctors always monitor you, but you cannot help how you think.

Please speak to someone. Don’t be in that dark place, that can suck you in.

 

If you are struggling with your mental health following a diagnosis of blood cancer, you can now apply for our new Ann Ashley Leukaemia Counselling Fund, providing access to private counselling services through the provision of grants. Find out more and apply here.

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