Victoria W.
Posted by

My Chronic Myeloid Leukamia Journey.

Victoria W.
Posted by
18 Jan 2016

A journey into the unknown....

  • I was 21 weeks pregnant, when i had the dreaded phone call. Well at the time of the phone call, when i recieved 4 phone calls, i thought i was amenic (not sure if spelt correct), i eventually visited the hospital. My husband came with me, and a friend looked after my 3 year old son. We got to the hospital, and was called into a room, with a DR and a nurse in a dark blue uniform(didnt realise she was a McMillan nurse). My haematologist said i have leukaemia. I wasnt really sure what it was, i remember my husband holding my hand really tight and looking at me. I asked what it was and he said you have, CML, Chronic Myeloid Leukaemia, cancer in the blood. I cannot tell you the feeling i experienced. I remember thinking my son, he is 3 years of age....i havent seen him grow, i havent took him on holiday, he hasnt even started school. I did ask my DR, am i going to die? He replied "We all die, but we all experience death in a different way. But we will help you as much as we can and be very supportive". As i was pregnant, it was a hinderance to the hospital as they wanted me to start medication asap, but i couldnt as i was pregnant. So at the beginning i had alot of hospital appointments, blood tests, and scans, and meetings with the midwife. They put me on leukopherisis, which was not nice at all. Hate needles, and having needles in both arms, with my blood been washed, sitting there for an hour or two, was very hard work. I had to get through it for my unborn child, and my 3 year old son, plus my husband. The hospital was still asking do you want your unborn child. I wasnt having it any other way, yes i was having my unborn child. As the months went by, with this leukopherisis, i couldnt do it anymore. I couldnt breath properly, walking down the street was hard work, breathing properly, feeling sick, not my normal self etc. At first i thought it was because i was pregnant but obviously not. I had CML and didnt know it. My journey was hard work, in the hospital at least 3 times per week. Having blood tests, leukopherisis, scans, doctors appointments. I was constantly tired and exhausted and having a 3 year old aswell, not being a normal mom, i was heart broken. 6 years this 28th January 2016, was when i was first diagnosed with my CML, So i have had alot to deal with, physical and mentally. I was unsure how my daughter, now 5 years old. Would be healthwise. The DR's wasnt sure how she would be either. She could have been handicapped, slow growth, they did scans etc and nothing showed on there. They also said they dont know how it would affect her mentally aswell, with her education, and learning. Well i can say my daughter, Jessica, is perfect in everyway. Having her 4 weeks prior to her due date and by ceserean as my blood became worse they had to bring her birth forward. As i was put to sleep during the operation, i couldnt hold my beautiful daughter for a few hours, i was dazed, confused and not with it. When i awoke, and her her, well she was beautiful in everyway..... My husband was the first to hold our precious baby and he was over the moon. When my son came aswell it was the icing on the cake. My family and what i had just been through, well i never thought of that. The next day, the DR's phoned down to my ward wanting me to have another mild operation, they wanted me to have a bone marrow biopsy. I was in tears, i was so weak, with metal stitches in me, tired, could hardly move. The nurse on my ward said no, she is not ready just yet and she is very upset. So i never had it that day. I was in hospital for a few days bonding with my daughter, then she became ill. She had to go into the baby ward where there was babies on tubes. My baby had done something to her finger where the skin was coming away and it was getting worse. I was panicking, blaming myself. She stayed in that ward for a night and was ready to come back to me. Phew. We came home and was happy. I was tired and exhausted but stayed positive. 6 years on, i have my blood tests done every 3 months and it seems to be going. I have side effects from my medication, as i always do. I have taken the same medication and nothing different. I have had 2 bone marrow biopsy's. They wasnt a nice experience. I am only 38 years old and was diagnosed at 33 years of age. I want to share my story and experiences with anyone who has been affected, family friends or the one with the horrible disease. If i can help answer any questions, be a shoulder to cry on. I have remained mostly positive about what i have, with the odd day.

Comments

Eleanor Baggley
25.01.2016

Hi Victoria, thank you so much for sharing your experience with us. I can't imagine how difficult it must have been for you to get your diagnosis at 21 weeks pregnant, but it's wonderful that your daughter is so healthy. It sounds like you have a very supportive family and it's very kind of your to offer your support to others in a similar situation. Please know that we're here if there is ever anything you need. Very best wishes, Eleanor

Lizzie Goates
25.01.2016

Hi Victoria,

 

What a lot to have gone through. Your positivity is inspiring and I am so glad that you and your daughter are okay. Thank you so much for sharing this with us, and I know this will encourage and comfort others to get through some personal and sometimes horrible experiences. You have very kindly offered support to others and please know we are here to support you in any way we can. I am sending all my best to your wonderful family. Please do keep in touch as it would be lovely to know how you are getting on.