Bereaved family and friends

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Grieving Daughter. My Story of my Mothers Battle with Pleural Mesothelioma

Stephanie91
Posted by

Hello to anyone who will read this, 

I feel so lost and sometimes I feel like I have no one to talk to and barely anyone who understands me. I need a place to air my grief and concerns so I will try to do it here. This will be long so please try to bear with me. My mother passed away on April 30th, 2019 from Pleural Mesothelioma and ever since then I have been a mess. I try my best to get through the day and I am able to when I go to work but the second I get home or I'm alone I fall apart. Because of this, I have started ignoring my mother, pushing thoughts of her away. I actively try not to think about her because every time I do I feel like I'm going to die. Here is her story:

In December of 2017, my parents were redoing their bedroom. I was 26 at the time and still living at home because even though I had my degree and worked in my field I decided to work part-time and go back to university. I was in the middle of finals and was trying to help my mom with the renovations. She was always thin, fit and very health conscious so when she was having trouble breathing after going up the stairs in my house I urged her to see her doctor. I thought she had pneumonia and that a good dose of antibiotics would do the trick. Her doctor gave her the antibiotics but sent her for a chest X-ray as well. The results came back that she had a lot of fluid in her lungs so they sent her to see a pulmonary specialist. I brought her to that appointment and every other appointment she had from then on. The pulmonary specialist sent her for another chest x-ray and was concerned because she had even more fluid in her lungs then the first one. This meant the antibiotics weren't working so she knew something else was happening. They checked my mom into the hospital to drain the fluid from her lungs and test it. My life turned upside down from this point on. After weeks of being in the hospital and asking all sorts of bizarre questions such as "did your mother ever work in a mine" she was given the diagnosis of cancer and sent home until they had more results from the liquid. In February 2018, which felt like a year of waiting, we were given the diagnosis of Pleural Mesothelioma. Once I heard the diagnosis I realized she had been given a death sentence. Her oncologist kept saying they were going for a "curative approach" this term bothered me because from my knowledge no one survived this cancer. I took care of her medication, her food, her activities, her environment, I brought her to all her doctor's appointments and made sure she was never in pain. I was constantly on the phone with doctors and pharmacists trying to get her the best care. In March they did a biopsy to find out which of the three Mesothelioms it was. To our luck it was the slow one, meaning we should have more time with her. Shortly after in March she started 3 rounds of Chemo over 6 weeks. The CT scan showed progression. I could tell even before the scan that she was having progression, she was getting sicker and sicker in front of my eyes and I couldn't do anything to stop it. Immediately they took her off chemo and began searching for other options. We live in Canada but we brought her to Houston Texas where they were doing Immunotherapy trials at MD Andreson for solid tumors. We were hoping to get her into a trial, my father spent a lot of money there just to get a phone call from our oncologist saying they have the same trial for free at our hospital. We dragged my very sick mother back to Montreal to start her on the Immunotherapy trial. We had to wait 9 weeks from the beginning of the trial until the first CT scan; this again felt like a lifetime. Although she seemed to be getting better, her energy was up, her appetite was up, she was gaining her weight back. she was acting like herself once more. Finally, we got the results of the CT scan back and the immunotherapy worked wonders. It had almost completely regressed in the lungs, around the heart and diaphragm. I was starting to feel hopeful like maybe I could have another 2 years with my mom if they could keep this disease at bay. In the meantime again everything was falling on me, shopping and cleaning,  and cooking for everyone, I also had school and worked and doctors appointments. I was very overwhelmed but I knew I could do it so she didn't have to. 

On a side note, none of us ever had a good relationship with my father, including my mother. He was verbally and emotionally abusive to us all our whole lives. He demanded home-cooked meals every night and when he didn't get it he would scream at my mother. He spent my whole life screaming at my mother, my sister, and I. He worked my entire childhood so I never saw him except when he was screaming. As we got older he suddenly wanted to spend time with us but by that point, we all couldn't stand him and it was too late. No one wanted to be around him but we put up with it, me most of all. My sister moved out the second she could but I stuck around to protect my mother. Even while she was sick and going through treatment he expected her to cook for him every night. Even when she didn't feel good. So many times I would get home from the gym or school to find her crying in the kitchen she was in so much pain but had to make his dinner. I would tell her to go sit down and I would finish it for her. The day I found out she had cancer I started crying to any sort of god that was out there begging him not to take her from me. I couldn't be stuck alone with my father for that was my worst nightmare come true since I was a child. 

Getting back to her story, I was incredibly overwhelmed but it was worth it for my mother, the woman who gave us everything and did everything for her two girls. It was the least I could do to repay her sacrifices. In life, I have learned that nothing good lasts forever. After another 9 weeks of treatment, they saw progression in the abdomen, this was a dangerous place for cancer to go, this was a location where cancer could kill her. They said they would do two more treatments and another CT scan and if there was more progression she would need to be taken off the clinical trial. Obviously you know how this story ends so 6 weeks later her abdomen was full of fluid and tumor and they took her off the treatment. This was in November 2018 and this was the beginning of the end. After she was taken off the treatment her pain came back, she needed meds again to control it, she was losing weight quickly because she constantly felt bloated and couldn't eat. Her abdomen was quickly distending, she looked like she was 9 months pregnant and she was so uncomfortable. The doctors seemed to have forgotten about her and I wanted to know how quickly the cancer was moving and how much longer I would have with her. I forgot to mention earlier that my sister got engaged in June 2018 and was to be married on April 28th, 2019. I pushed for another CT scan and they complied. On January 30th, 2019 we went for the CT scan that changed my mother's condition. They found a lot of liquid surrounding her heart and were worried it would compress her heart and it would stop so they sent us to the hospital to get the liquid removed. I brought her in, stayed with her for the procedure, my father and sister met us there and she was staying the night to make sure she was stable and was to be released in the morning. The next day I was getting ready for school, my father left for work and I was on the phone with my sister discussing my mother's condition. All of a sudden my father returned to the house about 5 minutes after he left which was very unlike him. He told me he received a call from the hospital and that my mother had a stroke. I could not believe what I was hearing. On top of all the suffering my mother had gone through and how she spent her whole life being healthy and overly cautious she had a stroke?!?! I was confused and angry but pushed those feelings aside and we ran down to the hospital. my mother was in critical condition, she couldn't breathe, talk or move the left side of her body. They intubated her and put her into a medically induced coma so they could do a scan and find the clot. We were then told she had a very big clot in the back of her head and it needed to be removed immediately. They could not give her the drug for strokes because of the tube draining the fluid from the heart, her heart was compromised. They sent her to the Neurological Institute of Montreal and removed the clot. They told us to go home and we would be given a call when she was back at the hospital so we could go see her. That day felt like it lasted forever. My mom was not good at going through procedures by herself, she had a lot of anxiety and was easily frightened. I was with her for everything because it comforted her and all I could think was she must be so scared. She's all alone, probably confused and didn't know what was going on. The last time I had seen her was the evening before at 10 pm, I told her I'd come back to visit her the next day and she never got to see me. because I had been taking care of her for a year already she relied on me for everything. She knew as long as I was around everything would be okay. So the fact that I couldn't see her or be with her or talk to her made me crazy. Finally, at about 11 pm on the 31st of January 2019, we were able to go and see her. I can't even describe how she looked. Seeing your 61-year-old mother in that sort of condition, it scarred me. no one should ever have to see a loved one like that. However I put it all aside for her once again, I didn't want to freak her out so I had to be calm. She started to cry as soon as she saw us but I reassured her they got the clot out and that she would come home as soon as they would let her. Over the next week, she improved a lot. After about 4 days she was able to swallow again so they took the tube out and she was able to eat. She got most of her left side working again and only had a mild weakness. She was in the hospital for nearly 4 weeks and then they wanted to send her to a rehab program. We got to the rehab program and the building was so far from our house, disgusting, everyone spoke French and my mother didn't, and they stuck her in a room with a man that wouldn't stop staring at her. I could not leave my mother there. I fought with the rehab facility until they finally let me take her home. We decided we would do private rehab from home. I now know this was the best decision I could have made for me and my mother. We worked so hard every day at home on rehab we got all the specialists, speech, physio and occupational at the house. We even hired a caretaker so I could go to school and work and not have to worry about my mother being alone. I ended up dropping out of school that semester because I could not concentrate and even with the caretaker all the responsibility was on me. I has no help from my father and no help from my sister. My father would leave for work every day around 9 and come home around 10 when the day was over and my mom was going to sleep. I barely got sleep because I couldn't and because she was always moving around at night and I was scared. I never knew if that would be the last night I saw her alive. There were days where no amount of pain killers were enough and she would cry to me and there was nothing I could do because I am not a doctor and I could not take her pain away. That was the worst feeling of all. Every day my mom was getting sicker and sicker and my sister's wedding was getting closer and closer. I was so scared she would die before the wedding. Finally, the wedding day arrived and my mother was there. She sat through the ceremony and immediately went to a hotel room to relax with the caregiver. My dad had to take care of her and spend one night with her and he couldn't do it. He called me in the morning angry because he got no sleep, even though I never got any sleep. I helped put her into his car and then followed them home shortly after. I was hungry and went out to get something to eat, during my meal the caregiver called once again and said my mom is scared and can't breathe, she's choking on phlegm and is crying so I ran home. By the time I got home she was in a state where I knew she didn't have 24 hours left. She couldn't swallow any of her pain killers and was unresponsive so I called the CLSC for the doctors and nurses to come to my house. She had been registered for this palliative service after the stroke. They inserted needles into her arms so I could push the drugs subcutaneously. I stayed up all night pushing the drugs whenever she sounded uncomfortable or when her breathing became rattled. All while my dad was getting his beauty sleep. The next morning she was supposed to be going to palliative care because she reached the point where I couldn't help her anymore. When the ambulance finally arrived shortly after 9 am on April 30th, 2019 my mother passed away while being put into the ambulance. I had her bag in hand, I followed them out to the ambulance, I was going to ride with her. She opened her eyes for the first time in 12 hours looked up at the sky, the sun was shining brightly, she looked at me and took her last breath, her head fell backward and the bottom half of her face turned blue. At that point, I knew she was gone. 

Now here I am 6 months later with a human-sized hole in my heart and I don't know what to do with myself. I am so depressed, I have gained so much weight because the only thing that makes me numb is food. I hate my dad more than ever before and I am moving into an apartment with my boyfriend of nearly 8 years. I am 28 years old and I am back to working full time. When I told my father part of the reason I'm moving out is that being in the house around my moms stuff by myself is too hard he told me so grow up and get over it because it's already been 6 months. He told me to clean out her shit and get rid of it. He is such a disgusting and distasteful person. He treated her so badly their whole marriage even while she was sick. If it weren't for me my mom would not have been able to stay at home until the end and he doesn't seem to recognize any of this now that it's over. While she was sick after the stroke if he had to spend even one day with her he would complain about it the whole time. Texting me annoying questions that he should know the answers to. He continued to scream at her even post-stroke. The last time he yelled at her was in April the same month she passed. My mothers 86 year old mother is still alive and I have always been very close to her. He makes rude comments every time I go to see her. I miss my mother so much and wish every day that she was still here. I can't even think about her without crying. She was my only support system besides my boyfriend and now she's gone. I find myself pushing thoughts of her away so I can get through my days without crying. I still picture her post-stroke, sick and dying all the time. these images come in flashes and I feel like I have PTSD but I don't know if this situation counts as PTSD. I'm scared I'm going to forget her, her smell and her voice. I'm so angry that she had that stroke because I feel as if it took away the last 3 months that I could have had with her. She was never the same after the stroke. Physically she was almost back to herself only slightly weaker but mentally she was very different. At the time it felt like everything took forever but now looking back it feels as if blinked and she died. I feel very lonely and I get angry very easily, I have no patience anymore but I also have developed anxiety. I cannot be around a large group of people anymore. it makes me want to cry and hide. Every situation makes me nervous, I overthink so much that often I cannot sleep and I constantly feel exhausted. The only time I perform well is while I'm at work. I work at a daycare and my class is so cute and I love them so much they make me forget everything while I'm there. The second I'm alone I'm a different person. Nobody would think I am this way inside sometimes I'm so good at acting I even fool myself and think I'm okay until it hits me all over again. I am angry and sad at the same time. I have so many regrets and so many things I would do differently which most people think is crazy since I did everything I could for her. I feel guilty that she died and like she thinks I gave up on her. She wanted so badly to live but nothing more could have been done, rationally I know this but I still feel like if I had pushed harder maybe we could have found another treatment and worst of all I am angry that she got sick and not my dad. I feel like she was the last person who deserved to suffer like that but he does. Why did it have to be her???

GRANNY59
Posted by

Hi Stephanie91 welcome to the forum. I did read your post and I extend  to you my sincere sympathies on your sad loss.

It sounds like you were all things to all people whilst your mum was very unwell and nobody seems to have stopped to think about how you are in the whole scenario. All the feelings that you are describing seem to be all as a result of grief so you are not alone. However, I do wonder if it might be worth seeking out some grief counseling where you could chat with someone about how you are feeling.

You have absolutely nothing to reproach yourself for reading your post you did everything that you could for your mum often in very challenging circumstances so be a bit kinder to yourself as there are lots of things in your  post that couldn't have happened for your mum if it hadn't been for you.

It must be very difficult to focus on anything that is good at this time but it sounds to me like this was one special mum and she must have had some very special qualities for you to have the depth of love that you have for her. That my friend is very special even by itself as not everyone has that special relationship with their mum. Maybe in the darker times it is these things that you need to focus on and remember her with much love and part of her will always be with you. 

If your mum was here now what would she be saying to you?

I don't know what else to say to you to make any of this feel any better for you but I do want you to know that people are listening and people hear you and feel your pain.

Meantime Im sending some huge big hugs your way for now. xxxxx

sarahlouise1973
Posted by

Oh Stephanie, I read your post from beginning to end, nodding at parts and shaking my head at others. You are a wonderful human being for everything you did for your mom, despite getting no help from your father and sister. They should be ashamed of themselves. If I were you I would cut your father out of your life completely. I know he is your father, but to let you go through that on your own and to gripe when he only had to do it once, that is not normal behaviour. He should be singing your praises to everybody who will listen and attempting to build a relationship with you now, albeit late. I'm glad you have your grandmother around to talk to and remind you of good times and that you are moving out to live with your boyfriend. That's great. And your job sounds amazing too. Those are really positive things to hang onto. 

I think you may be suffering from PTSD. I think I have it too. Those flashbacks from the hospital just keep knocking me over time and time again. I can't shake them and they cloud any happy memories I have. I can't seem to get to the happy memories as the devastating ones seem to be blocking access to them. Does that make sense? I'm not surprised you feel so alone. Unless somebody has been through this awful trauma they will never truly understand. I am considering going to see a counselor or somebody to talk to about my grief. I'm also not sure what to do for the best. Some days are much better than others, but the past couple of days have been bad. I think with Christmas approaching I'm feeling worse. That was always the time she came alive with excitement planning everything to the last detail. 

Do you talk to your mom? I talk to mine all of the time. Just silly things and then I imagine her talking back to me. I can hear her voice when I do that. I can imagine exactly what she would say. I am sure that if your mom was looking down on you now she would be immensely proud of you and disgusted with your father. I don't think you could have physically or emotionally done any more than you did. It was not your burden to manage alone, but you did it so well right until the end. 

I think one thing I am learning is just to go with it, to not expect to ever be "over it" and to take each day as it comes. I also push thoughts of my mum to one side and then feel so guilty. I don't do it consciously all of the time and so I do think it's the brain's survival tactic for getting through each day. 

I just wanted to let you know that you are not alone. Please feel free to drop me a line if you feel like a chat or getting anything off of your chest. We're all here to support you and each other. Take care of yourself. Xx