Absolute shitshow.

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I couldn't think of a more appropriate title for the current situation with my mother. 

In March 22 she was diagnosed with stage 4 suspected uterine cancer, had a radical hysterectomy followed by 6 stages of chemo over 7 months due to severe gastroparesis caused by surgical complications. In January she was declared in remission, in May she was told there was an 8mm tumor in a lymph node near her neck. She was told this was visible in Jan but they weren't sure if it was cancer. The consultant didn't mention it and they weren't planning to monitoring it at the consultation in May and that she should look out for symptoms. I stated she historically doesn't display symptoms and sufferers from insomnia so is frequently tired so fatigue can not be a reliance symptom. I requested a CT. The results in Auguest noted further tumors and notable a large inoperable  tumor in her liver. Again I had to request a second scan. Since then we've had a couple of consultations with her oncologist and frankly, I don't feel we can trust her oncologist. She stated since mum's cancer came back earlier than they'd have liked (apparently it was on the cusp of using the same treatment), they won't offer her the same treatment which she'd like. They've offered different drugs which have a 30% chance of working with horrendous side effects. We feel her consultations are not a safe space to ask questions, it's almost as if she thinks ks we have a cheek to ask questions. My mother and I understand its not curative but I think questions are normal and shoild be encouraged. I also feel they aren't looking at my mother as an individual who seeks information. It all came to a head when I sent an email two weeks prior to the last consultation asking about thermal ablation. At the beginning of rhe consultation the oncologist said I send an email would we like to discuss it. I said yes, she said go ahead, I began to speak and she cut me off. I can't quite understand what her issue is but I have zero time for it! She went on to state she knows nothing about it or the selection process but can refer me to Radiology. I looked on Radiology Web page which states they have regular MDT with oncologists so why didn't she wait two weeks and behave like she's never heard if them. I do plan to contact PALS and her CNS nurse to request another consultant as dealing with her had become quite stressful. To make matters worse I'm 5 weeks pregnant from IVF and trying to manage stress. On the face of it I'm holding it together but I'm not sure if I'm just suppressing everything. IVF in itself was a roller coaster of emotions. I'm an only child and now fearful ill lose my mother before the baby is born. Me and my mother are acutely aware she'll die from cancer but we want the best possible protocol to prolong life and the quality of her life but it feels like a constant battle and I'm scared ill lose her and my baby prematurely. I think I just needed to get it out my system as I'm so tired of fighting and being strong. 

  • Hi  

    I hope you have some positive outcome from contacting PALS, they have been quite helpful to us in the past. I wish I could somehow give you some answers but perhaps the best I can do is stand beside you and notice the pain and somehow hope that helps give you that tiny bit of added strength.

    <<hugs>>

    Steve

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