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Patient Perspective: My Cancer Anniversary

written by

Leukaemia Care, Charity

  • Vickie

28th January 2018 was my 8th year anniversary since I was first diagnosed with chronic myeloid leukaemia (CML). This was three days before my sons 4th birthday, and I was also pregnant at the time by 21 weeks.

I went to the doctors for a routine blood test for my pregnancy. Within two days, I had a phone call from my doctors and the hospital. They asked me to go hospital as my blood test had shown something in it. They wouldn’t tell me over the phone what was wrong, so I went in. Me and my husband went together, and my doctor explained what was wrong with me. He gave me another blood test there and then and asked me to come back to hospital the next day. That’s when I was told I definitely had CML. I was hoping they perhaps had got it wrong, but no, I had CML at 21 weeks pregnant and whilst mum to a three-year-old son.

Prior to my diagnosis, I thought all my symptoms were down to being pregnant. My first pregnancy was amazing; I loved being pregnant. However, this pregnancy was horrible. I couldn’t walk far due to becoming breathless, exhausted and tired. I would go to car boots but had to leave early as I couldn’t walk around them anymore. I would be so exhausted I was out of breath, trying to catch my breath back. My belly would hurt. All I wanted to do was sit down and not move. I would also feel sick and be sick. I remember going grocery shopping with my husband and at the till I nearly collapsed. I asked for a chair and sat down for quite a while, feeling embarrassed.

Running around after my son, changing his nappy and bath times were horrendous. I was always tired, always exhausted, not feeling well at all, but I put this down to being pregnant. I was always adamant I was having a girl as my boy didn’t give me this much grief. But like I said, life was difficult being pregnant and not being well. I couldn’t go out anywhere that involved walking to much as I would collapse. Couldn’t go to family get togethers, go out for a meal. It was horrible.

When I was first diagnosed, I am not going to lie, I never even knew what leukaemia was. So, when the doctor said it was blood cancer, I thought my life was over. I asked him, when am I going to die? Leaving my three-year-old son behind and husband. What have I done so wrong in life to have this? It was all why? Why me?

However, eight years on, I have learnt a lot. Everybody deals with things in different ways. I just did what I was told by my doctors basically. Don’t get me wrong, emotionally I was a wreck, but me being me, I didn’t really speak to anyone about how I felt, how I really felt deep down, how I’m coping. People would ask and I would always say I am fine, when really I wasn’t.

My advice to anyone is don’t be afraid to ask for help. Don’t be afraid to let it out. Talk about it, no matter how stupid you might think it is, you need to talk. Whether it be with family or friends or a charity, you really do need talk. Keeping things bottled up will not get you anywhere. Don’t think you are a burden to anyone. People listen. They might not have the answers, but it’s always good to talk, cry, or have a moan.

Also, I have two children, and explaining to them was the hardest thing ever. I told my son when he was about seven years old and now he is 11. I also told my daughter not long ago, as she is seven years old as well. I told them both because I didn’t want them to hear it from anyone else. Plus, if I am having a bad day, I thought they needed to know the truth. I told them I have CML, which is cancer in the blood, so sometimes mummy isn’t well. I also told them I go to hospital to have my bloods checked to make sure mummy is ok. I have also shown them the tablets I take and explain to them how they help mummy. I don’t go into a lot of detail as it’s hard for them to understand, but they both know I have cancer. If they ever ask me any questions I will always answer them to the best I possibly can. So, don’t hide anything from your children either. You don’t have to go into mega detail but telling them is better than not telling them.

Also learn about your illness, understand more about it. When I was diagnosed, I did not understand the doctor’s terminology at all, and found it all very confusing. I googled things and asked charities for booklets. I read through them and learnt a lot on the way. Always be truthful as well. If you are having a bad day, watch tv, eat chocolate. You deserve it.

As such, the build-up to my ‘cancerversary’ isn’t the best. I will admit it’s hard. It makes me think about when I was first told my news. When I had my leukopheresis. My bone marrow biopsies. The in and out of hospital. I thought it would never end. Being 21 weeks pregnant didn’t help either, always being in the maternity block getting checked and scanned.

It makes me feel low, knowing how long I have actually had my CML. Eight years on and I’m still going to the hospital every three months for my bloods. Still having side effects from my oral chemotherapy. Still on the same dose as eight years ago. Why hasn’t it been lowered? Why am I going every three months? Is it going to come back?

When my renewal date comes, I always get reminded. I always feel low. I do have a hard time dealing with it, but I talk to my family and friends for support. I do cry to get it out of my system, which makes me feel better.

It’s not nice being reminded, but we have to somehow deal with it. We all have our ways of doing just that. Talking to people about how you feel, whether it’s family, friends or Leukaemia Care. There will always be someone to talk to. Don’t bottle it up. 

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