Hi everyone, I'm 21 years old and I lost my dad on 27th October 2018. Sorry this is quite a long one!
My dad was diagnosed with Acute Myeloid Leukaemia in Spring 2016 whilst I was in my last year of school. He went into remission a couple of times, had countless rounds of chemo, was in hospital in isolation for months on end and even tried out a medical trial. In late August 2018 he was no longer able to receive chemo as it would be far too harsh on his body and would end up killing him, and it would also not benefit him as he was now incurable. So he was offered a new drug (I can't remember the name, I've blurred a lot of stuff out). This would be given through fortnightly injections but it would help on a sort of palliative basis and he was still healthy and doing everything he liked doing, walks etc.
In early October he was beginning to feel the effects of the drugs - we had be told it would be similar side effects to the chemo he had received over the last 2 years. He was tired a lot and even walking up the stairs to the toilet would cause him to be breathless. He decided that the next round of injections would be the last as he couldn't cope with living like this. on Thursday 18th October he decided to have an early night because he felt unwell and tired. Again, we were naive and thought this was side effects hitting him. He never got up out his bed, only for going to the toilet which was a struggle. Over that weekend he had a couple of toilet accidents and went for a bath, but couldn't get out the bath so my mum and my next door neighbour had to lift him out the bath. We contacted his doctor who said just to let him rest and he was just feeling the side effects.
On Monday 22nd October, I had been working and came home at 10pm. Around 10.15, my mum and I heard a massive thud in the toilet. My dad had collapsed in the toilet but he'd locked the door. I phoned an ambulance and my mum phoned my sister to come over to try and help unlock the door. My sister is a nurse - she managed to get the door unlocked and looked at him and the symptoms he was having and said she thought he had sepsis. The paramedics came in and helped my dad up and confirmed he was in septic shock. He was confused, upset and didn't recognise us now
He was taken to hospital and I contacted my other siblings to come. Over the next few hours new waited and waited, no one telling us what was happening. Around 2am, we were allowed to see him. He was sitting up in his bed, conscious but completely unaware of where he was or who we were. Around 8am, his doctor confirmed he was in septic shock and also had pneumonia. He was taken to High Dependency. However, he got progressively sicker and was moved to ICU. This was Tuesday evening. Over the next few days, it was a rollercoaster of emotions. He couldn't breathe without oxygen being given to him as his levels were very low and they were going to ventilate him but this was then scrapped because they didn't think he'd wake up. He also couldn't eat but they couldn't put a feeding tube in because his blood wasn't clotting so he could bleed out. On the Thursday evening/Friday morning things were looking a bit hopeful because he was breathing fine on his own and even managed a few spoonfuls of soup, and seemed to recognise us. We went home on Friday feeling hopeful. On Saturday, we were started losing our hope because he had to be put on oxygen again. He had a few rigors and then fell unconscious during the day. Around 6pm that night, the consultant took us into the family room and told us there was now nothing they could do for my dad. He wasn't going to wake up from his sleep as he was too sick. He told us they were going to remove the machines and oxygens, give him painkillers and make him as comfortable as possible.
We went into his room in ICU, and all the machines had been taken away. He was lying, sound asleep and looked so peaceful. My mum, my 3 sisters, my brother and I sat round his bed and talked to him, sang to him, cried over him. A minister came and did a prayer with us and he as religious. We waited and waited and over the next couple of hours we knew it would happen soon. At 11.14pm on 27th October 2018, my dad passed away.
I can't even remember how I felt over the next few days. I felt numb and couldn't cry. I went back to uni the day after his funeral and through myself into trying to complete my degree as a student teacher. I was told by my uni if I didn't go back by a certain date I'd have to repeat the year and I couldn't bring myself to do that. Since then I had been at uni every day then work all weekend. My family are all very close and my boyfriend and friends are supportive but I just can't talk to anyone. I am now in the last 4 months of my degree and I feel like its suddenly hitting me that my dad is dead. I can't concentrate on anything, I am extremely angry all the time, causing unnecessary arguments. I have no motivation to do anything. I feel like I have a massive hole in my heart and everything reminds me of my dad. I was driving the other day and was looking at the colour of the sunset and it made me cry to the point I had to pull over my car because I was sobbing so much because my dad would have liked the sunset. I am on Fluoxetine and Propanolol for depression and anxiety. I have also tried counselling but hated it so much. I don't know how to cope with this anymore because it is so overwhelming and so, so unfair.
Thank you for reading this. Any help is appreciated at all!
xx
Hi and welcome to the Community but so so sorry to read your story.
Well done for joining the Community and being able to type up your story and I actually think that you will feel the benefit in doing this.
I was the one with the cancer and although I have lost family and friends to cancer everyone’s journey is very unique.
Talking with people who have been on this journey can help so think about posting your story in our very supportive Bereaved family and friends group.
You may find our Macmillan Support Line Services to be helpful - call them on 0808 808 00 00 This free service can give you some great emotion al support mostly open 8.00 to 8.00 but check the link.
Talking with people face to face who have been on this road can help a lot so check to see if you have any Local Macmillan Support in your area or a Maggie’s Centre as these folks are amazing.
I am so sorry to read your story and all have is a ((hug)) xx
Hi Sunflower51 - I was really sorry to read of the pain in losing your father.
AML is a horrible disease and so indiscriminate. In February 2018 I had a random blood test and by the end of that day I was in hospital having been diagnosed with AML.
Nearly two years on I am extremely grateful to be alive, there were times when it was thought that I would not make it. It meant that I spent many hours dwelling on my imminent death and the one thing that gave me solstice was the thought that my wife would be ok, I knew life would be horrible for her but I new slowly over time she would be able to make small steps. Your dad in his passing would have taken so much strength in the thought that his family would be ok.
i worry about it coming back and have had some counselling. It’s hard to equate why I lived and so many other patients around me didn’t. During counselling the cancer “bubble” came up and to try and not live in the AML bubble. Ever though the past couple of years have broken my partner and I - I try to push myself a little bit.
Through all the time I spent in hospital, it was quite easy for me. I was so poorly I was quite oblivious to all. The cluster bomb was the pain it caused my wife, friends and family. They are left watching your decline while still dealing with normal life.
I hope some sunshine slips through the shadows. Your dad would be beaming for everything you achieve.
jake
Dear
i am so sorry of the trauma you experienced during your dad’s illness, aml is one of the most challenging illnesses in the world of blood cancer and places considerable strains on family members. However it seems you have managed to work through in your own mind what happened and now you want to find a way to move forward and live a purposeful life which I’m sure your dad would have wanted more than anything. Counselling is not for everyone so don’t feel bad it didn’t work for you, my advice would be to set small achievable goals and don’t look to far into the future and place so much pressure on yourself to be “over it” it’s unrealistic to think you haven’t been changed by your experiences but not necessarily in a totally bad way, you will be a much more empathetic person now and maybe you could use you experiences to help others in your position, which I’m sure you’ve already done by being brave enough to open up about how your feeling.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
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