Angela´s story

My name is Angela Jones and I'm from Dublin. I'm here to tell the story of my mother's thrombosisThrombosis refers to abnormal, life-threatening blood clots that form in the artery or vein. which she acquired through cancerA term for diseases in which cells grow abnormally with the potential to invade or spread to other parts of the body through the blood and lymph system. treatment and from being a cancerA term for diseases in which cells grow abnormally with the potential to invade or spread to other parts of the body through the blood and lymph system. patient. My mother was diagnosed with cancerA term for diseases in which cells grow abnormally with the potential to invade or spread to other parts of the body through the blood and lymph system. in July of 2009. She had developed a small lump in her neck earlier in the year.Surgery was scheduled for the beginning of August of 2009 and a week later my mother was told she had branchial cyst squamous cell carcinoma and that she would need treatment.She went out for radiology, it was supposed to be initially 16 doses of chemotherapyChemotherapy (also known as chemo) is a type of cancer treatment that uses one or several drugs in combination. and approximately 33 doses of radiotherapy, and started her treatment in October.

I think it was the first Friday of November she went Christmas shopping. She came back that Friday and said “I have a pain in my leg” and I said “Oh you've pulled a muscle” and she said “OK fine” and I think she was kind of rubbing it. So over the weekend she'd had more discomfort and she said “Look I'm going to ring the hospital on Monday morning and see what they say”. So we rang them about half 7:00 in the morning and they said “Come in we'll check you over and see what's going on”.

So we went in and I remember we were making silly jokes because we were both nervous just sitting there kind of waiting to see what they said. The doctor came in and he said “Look I'm going to give you the option you can come into hospital and finish off your treatment. We'll make sure you're eating your drinking. Everything's looked after”.

It wasn't a worry to either of us. So she was in hospital and on Wednesday the 11th November the nurse was doing her rounds and my mother said “I´m so sore”. She was lying on the bed and the nurse looked down at her calf and said “I don't like the look of that”. And we said “What do you mean?” And she said “Well it's quite swollen. I want to measure that- there could be something here”. So she went, she got a measuring tape, measured it and said “Look there's a possibility you have a DVTDeep Vein Thrombosis (DVT): The condition that describes when a blood clot, or thrombus, develops in a deep vein.”. And you know all we knew about this was that you got from flying. But we got a fright. We thought how did that happen? Later on the doctor ordered a venogramA less-common test that identifies blood clots in the leg by injecting a special dye into a vein on the foot. An X-ray is then used to identify if there is a clot.c. They had trouble seeing it at first and then they diagnosed it that afternoon. Later that afternoon they said “We're going to start treating this it will be a daily thing. You may have to carry on the treatment for maybe six months”.

I remember at the time there was a patient in the next patch who'd been diagnosed with a DVTDeep Vein Thrombosis (DVT): The condition that describes when a blood clot, or thrombus, develops in a deep vein. who was having treatment for a different kind of cancerA term for diseases in which cells grow abnormally with the potential to invade or spread to other parts of the body through the blood and lymph system.. So I kind of I thought it was just coincidence that the two of them were there. There was a big age gap this one was 27 and my mother was in her 50s. So I thought OK.

Then at about 10 days later her blood cell count was going down a bit. So they said “Your mother could be developing an infection. Probably nothing to worry about but we will move her into a room over into isolation” .

So she was in that room and I went to see her on the afternoon of the 30th of November and I stayed. I remember sitting on the chair, we watched TV little television in the room and we were making plans. I remember I went to leave and I shut the door and I opened the door again. I looked at her and I just I had never done that before. But I had a feeling that I wanted to see her. Didn't like the feeling, anyway went home thought no more about it.

So I was about to go to bed and at about ten o'clock, the hospital she was in phoned. , They said “Your mother is not feeling well and we're not sure what it is. She's breathing very quickly, her pulse is very fast and she seems very agitated. We're going to transfer her to another hospital.” So I called up to my husband. I said “You have to come with me, my mom's not well and we have to get to the hospital.”

I went straight up to the ward, I knew where she was and where the room was. They said “You can't go into the room at the moment because she's had a cardiac arrest and they're trying to resuscitate her”. There was a family room beside that ward and my husband and I were in there sort of pacing up and down wondering what to do. And then two young doctors came in holding the file from the original hospital and I said “What's going on?” They said “We´re trying to resuscitate your mother because she's had a cardiac incident.”I said “What's caused this?” And they said “Well it looks like a pulmonary embolism”.I thought it was just the worst fright ever because I knew an embolism was a very serious thing. I knew that much. So we went back in, and time seemed to just sort of…

So they came in at about 20 past 12:00 and they said “We are sorry. She's not responding in any way. You have to give permission for us to stop trying” I thought, I don't want that responsibility, but I knew it was me because my mother was intubated. I was her next of kin so I knew the decision was mine. So it was like a dream at this stage, it wasn't a real thing. I just wanted it to stop.

It never in a million years occurred to me this could happen. She was 54. My mother was helpful, terribly kind and incredibly funny. The funniest person ever. It's what I miss the most. That we laughed so much together.

Before my mother's diagnosis and before she was diagnosed with the deep vein thrombosisThrombosis refers to abnormal, life-threatening blood clots that form in the artery or vein. I didn't know there was any connection between cancerA term for diseases in which cells grow abnormally with the potential to invade or spread to other parts of the body through the blood and lymph system. and DVTDeep Vein Thrombosis (DVT): The condition that describes when a blood clot, or thrombus, develops in a deep vein. whatsoever.All I thought was that people on long haul flights or people who didn't move around a lot could get blood clots. I didn't know there was any connection.

And even after she was diagnosed with cancerA term for diseases in which cells grow abnormally with the potential to invade or spread to other parts of the body through the blood and lymph system. I read up on cancerA term for diseases in which cells grow abnormally with the potential to invade or spread to other parts of the body through the blood and lymph system. quite a lot and I spoke to the doctors a lot and never was DVTDeep Vein Thrombosis (DVT): The condition that describes when a blood clot, or thrombus, develops in a deep vein. mentioned just sort of a possibility to do with the treatment or the diagnosis at all. I knew nothing about it. I would say most people don't know anything about it. I wish that I knew, that we've been informed so that we could have been aware that day when she had symptoms.

Before the diagnosis of deep vein thrombosisThrombosis refers to abnormal, life-threatening blood clots that form in the artery or vein. my mother was experiencing symptoms for approximately 4-5 days not impacting her life in any great way. Because at that point she was resting a lot anyway. She wasn't going for long walks or anything and she was at home in bed a lot of the time she had gone. The only reason she noticed the pain was she had pushed herself a bit and gone for a walk on the Friday to go out and do a bit of Christmas shopping and just came home and was complaining of this pain in the leg.

Following the cancerA term for diseases in which cells grow abnormally with the potential to invade or spread to other parts of the body through the blood and lymph system. diagnosis we didn't receive any information whatsoever that there was a possibility of DVTDeep Vein Thrombosis (DVT): The condition that describes when a blood clot, or thrombus, develops in a deep vein. or thrombosisThrombosis refers to abnormal, life-threatening blood clots that form in the artery or vein. or anything related to that.

Once the treatment started I thought it would be just breaking down and that would be the end of it. I had gotten a big fright from it and nobody sort of validated the fright or said “Look you're right to be concerned and if you notice it getting worse or you feel anything tell us”.

For any newly diagnosed cancerA term for diseases in which cells grow abnormally with the potential to invade or spread to other parts of the body through the blood and lymph system. patient, whatever the cancerA term for diseases in which cells grow abnormally with the potential to invade or spread to other parts of the body through the blood and lymph system., wherever it is, this is something to take seriously. We don't want to scare people but people need to be aware.

I think patients should be made aware of the symptoms because an awful lot of people don't know the symptoms of a DVTDeep Vein Thrombosis (DVT): The condition that describes when a blood clot, or thrombus, develops in a deep vein.. Emphasize to patients and to patient´s families. Let them know the prevalence of thrombosisThrombosis refers to abnormal, life-threatening blood clots that form in the artery or vein. from their cancerA term for diseases in which cells grow abnormally with the potential to invade or spread to other parts of the body through the blood and lymph system., their treatment their surgery.

This is a real possibility for people who are diagnosed with cancerA term for diseases in which cells grow abnormally with the potential to invade or spread to other parts of the body through the blood and lymph system. and we know if people are aware of the facts, aware of the symptoms and the seriousness of the symptoms, then they're armed with the knowledge to avoid this.

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