I've had to cut a lot out over this due to the 10,000 character limit, like a lot of people I’ve lost someone I loved recently…my mum. She had spent almost 30 years battling cancer, however I’m angry not at the fact that she’s gone but how she’s been misdiagnosed and treated over her life. When she found a lump on her breast her doctor told her that she was “too young to have cancer” annoyed with this she went and got a second opinion where she found that she had quite an advance form of breast cancer. She had got that treated and we enjoyed quite a while without cancer until she ended up having severe headaches, over the year her doctor advised her it was simply migraines and gave her painkillers. It wasn’t until she was unable to walk and couldn’t write her name that they realised they had made a wrong diagnoses and found that she had a brain tumour the size of a golf ball. She had a number of other cancers (chest/adrenal etc) and she fought hard against each one of them, her second brain tumour would cause issues with her speech and we’d find out later it caused other issues too.
Over the years she complained of having a "lump" in her throat as she swallowed and went to a speech and language therapist for this, they got tests and scans done on her and even gave her an endoscope down her throat but found nothing cancerous and said nothing was wrong. She kept complaining about this lump that I kept telling her it was more than likely in her head as a result of her last brain tumour....and more importantly the radiotherapy that occurred after....how right I was.
Now comes to the last few years and where my anger stems greatest from. Her sister who is was a nurse constantly was asking her how she was, telling her what she should be doing etc etc, honestly thinking she was giving the best possible advice. After mum passed I had found documentation from her for painkilling drugs for terminal cancer patients....firstly she was never actually diagnosed terminal so to tell your sister that she may as well be dying while she still got fight in her is horrible. It really made mum feel depressed, I even seen some of the texts from mum saying that she "hadn't kicked the bucket yet". Painkiller I believe helped with her decline though.
Over the last year she had suffered from a pain in her arm, she put it down to stress and then eventually carpel tunnel from working at home with lockdown. Her sister continuously texting her "have you taken your painkillers"....masking the symptoms for something she doesn't even know she has. She had went to multiple doctors, mainly regarding joints and arthritis who told her it was nothing but "wear and tear". She believed them and kept taking painkillers...mainly codeine (and opioid based painkiller) for her pain in her arm. During this time she ended up having increased chest infections as well and would end up catching on certain foods (mostly cold/ice cream) and would put her asthma in overdrive. She kept on going back to the doctors up until a few months prior to her passing who again said there was nothing wrong with her arm.
Over the last 6 months of her life she found that she had multiple brain tumours, I believe that this was mainly due to the fact that she was on painkillers over the last year which has weakened her immune response and caused things to pick up (there is research done on the connections) She had undergone radiotherapy and the treatment appeared to halt the growth of her tumours.
The month or so before she passed her pain was so great that her sister came down and told her to go to the out of hours doctor, I believe her sister requested this doctor to give her morphine and pregabalin, which would affect each other. This would be the case and caused her to lose consciousness and collapse in her bedroom hitting her head square on a hard wooden chair. She would start going down from here, her inability to swallow (that would go into her lungs), her pain in her arm would increase.
She would go down and get another check up on her treatment of her brain tumours when she had showed them her painfully swollen arm they were quick to deduce that she had a blood clot, a DVT of the arm per se. They quickly started on giving her an anti clotting agent that she would have to be on for about 6 months and would be injected into her from my fatter. She had only started this for about a week when she was unable to swallow and when she did she started gargling and spitting up froth from her mouth. She was quickly admitted into hospital to find out what was wrong with her. Going over the last year or so I should have spotted her Dysphagia, she pretty much had this since her second brain tumour when she had the lump in her throat and such...I had told her about the condition years ago and she had advised her speech and language therapist of it but nothing had ever been done and this would end up killing her.
She was in there for a few nights, I was FaceTiming her every night, she was on a NBM (nil by mouth) regiment and was getting fluids intravenously. On her third day her speech and language therapist came to see her and got her to drink water and then some yogurt. That night when I spoke she was coughing a lot and was quite annoyed with what they had to do, she did say however that they would be back tomorrow with her consultant to see how she was coming along....they never came. I spoke to her the night before she took a turn for the worst and asked did anyone come, she said no, she was flustered....breathing quickly and coughing harder than before...I asked about the speech and language therapist if they came, to which her reply was "don't talk to me about them". She was clearly very distraught but there was nothing I could really do, I trusted the nurses and doctors in there to help her and keep her comfortable.
The following morning came quite quickly, we got a call to say that she had a turn for the worst, we got down there to find that we couldn't go in...they had to make sure she hadn't got COVID. When they finally stabilised her and found that she was negative they advised us that she had suffered from aspiration pneumonia (ironically this would be the last time they would use aspiration...but change it to simply pneumonia). After my father seen her I went down to see her too, the noise was immense, she was wearing a nebuliser mask to help with her breathing, her eyes rolling to the back, but she saw me and winked...I knew she was still there and fighting. She always fought for us throughout what she had though, we were always her reason for living.
She had stayed strong for a good few days, trying to fight the pneumonia she acquired from drinking and eating food from her speech and language therapist who never watched to make sure she was ok. But the pain in her arm and everywhere else for that matter was too great, she didn't want to be in pain anymore and request to ensure that she wasn't in pain in her dying days. I had only found this out through her consultant however this was after I had found a note that she had made my father write regarding her treatment the night she went downhill, she told him to write: They were cruel. Had to wait for 4 hours in panic. This happen twice on night shift. Pressed buzzer 4 times. I had brought this up with her consultant and the nurse that was there, they both denied this happening which led me to lodge a complaint regarding her treatment. How could they have left her there drowning and panicking, not doing a thing about it?! It infuriated me and response that I got from the lead nurse was less than satisfactory. They knew she had issues swallowing, they knew she was spitting up frothy sputum...but they still went ahead and fed her food.
She stayed with us for just over a week, and it wasn't as painless as she wanted it to be with her last words to me "shoot me". I'm sure it will haunt me for some time, how that week went, how we stayed over every night to make sure that she was fine and after how the nurses treated her that night. She wanted us to stay with her and we did, I don't regret that for a second, I stayed there more than my dad, didn't sleep a wink, trying to keep her in bed when she wanted to get out after being told by the nurses she needed to move around because of the sores she had.
You can see why I would be angry, I had wrote one final complaint back to them and they never replied, never phoned me at all. They want to deny all responsibility of what happened to save their hides, I honestly don't want any of them to lose their jobs....I just want an honest answer from them of what happened and not a kick around. I'm also angry about how this was missed by her previous appointments regarding her blood clot in her arm and more importantly the aftercare after her brain tumour to help with her speech and swallowing....both never happened. I'm angry about her sister who thought she knew what she was talking about, goading mum into painkillers as she was certain her pain was due to her cancer when it wasn't, it was simply masking her blood clot in her arm. With her on these opioid based painkillers helped decrease her immune functionality and further her dysphagia symptoms....I'm really not happy about it.
I'm sorry if I've been too honest about this, but it's been eating me up, and before you say I should get counselling...I have done that before she passed, I don't think my anger is anything to do with the loss but how she was actually treated in her last years.
