Hi Naz
Sorry you are having such a hard time. I was diagnosed in August and had mx followed by ANC in September and started my chemo yesterday. I have a friend who has finished active treatment and is experiencing similar problems to yourself about coming to terms with what she has been through and how to move forward.
Ten years ago I was being treated for Crohns disease, a digestive problem, which after about 3 months of severe pain and extreme weightloss resulted in an operation to remove part of my bowel. Whilst in hospital I developed a pressure sore, unbeknown to me and was subsequently discharged with it. By the next day it was really painful and really deep and after calling the doctor I was re-admitted to hospital. The sore was at the base of my spine, in the crease of my bum [sorry for that but it had a massive impact on my femininity due to its local and the loss of my breast has had a similar effect]. I had a couple of operations to clear the sore, followed by 2 months in hospital until it was in a position to be treated by the District Nurse. As you may imagine I got really depressed and found it hard to see the light at the end of the tunnel. Long story short, I was off work for a year in total but it was 3 years in total before it was fully healed. During those 3 years I felt every emotion possible and felt the consequences in all areas of my life. I was angry at the initial operation being needed, furious that someone elses negligence had caused me so much more pain and further ops, and there was, in my eyes the loss of my femininity and sexuality. At that time I was single and couldn’t imagine allowing anyone to get close to me having scars I had, both physical and mental.
I too took legal action looking for justice for myself and also to prevent, hopefully, others going through the same experience I had. It was difficult to do, because as you say, it keeps the whole experience at the front of your mind while you go through the process. I have to say though that I do think it was worth it. It might just be me but it felt like I was taking back a bit of control in my life, I did feel justice had been given back to me as the hospital accepted liability and took away that feeling that it had somehow been my fault and I was assured that changes have been made to prevent it happening again. Not sure how effective the last bit has been but I feel I have done what I can to prevent it happening again. It was never about an individual person more about the system and processes followed. Hope that makes sense.
I also found it difficult to come to terms with emotionally. Whenever I tried to talk about how I felt I didn’t feel that my friends and family could fully understand. I kept getting told to put it behind me and ‘its over now, forget about it’. If I could have done that I would have! There also seemed to be a bit of change the subject conversation and in my state of mind I assumed they weren’t interested or were just fed up of me banging on about it. I dont think they could understand the impact it had all had on other areas of my life too. I just felt so down and exhausted by the whole experience. My whole life felt it was under a bit of a cloud and I really struggled to see the good or the pleasure in other things and it was always tinged by this sadness. What made it more difficult was that I am usually a strong, can-do type of person. I looked into counselling and eventually found someone to go and see. I’ve never felt the need to do this before and didn’t know what to expect.
About a year after my ordeal I decided to see a counsellor. When I did see the counsellor it was nothing like I expected. She asked me a few questions to get me talking and I spent most of the first two sessions in tears as the words just poured out. At no time was she judgemental, she didn’t offer suggestions to put things right, she just steered the conversation so that everything I was feeling came out and any ideas for moving forward came from me. I had 6 sessions in all and as they progressed I could feel I was changing. It also helped me understand that what I had been feeling was perfectly normal. All in all I felt it was right for me to see a counsellor and I would certainly do so again. Actually spoke to my BCN about it earlier in the week and she has put me on the list to see someone.
I’ve found both with the Crohns/pressure sore problem and now with my breast cancer that friends and family don’t want to see you upset so when you do start to voice your opinions about how you feel they don’t understand where the words are coming from and dont really know what to say, so you end up hearing lots of platitudes and trite phrases [‘you will be fine’, ‘at least they have caught it early’, ‘now they have found it they can sort it out’ - all well meaning but somehow so meaningless to my current state of mind]
I’ve also been told how brave I am. I don’t feel like I am, I just feel that I have to do it. Now of what I went through 10 years ago or what I am going through now has been a lifestyle choice, its been a necessity as a consequence of circumstances beyond my control. I have cried but tend to do it alone so I don’t have to hear the words ‘whats wrong’ [from my sister, while I was in hospital after my ANC - Doh!]
To answer your question, in my opinion I would recommend counselling to anyone who feels they need it. I was lucky in that I found a counsellor that worked for me, the first session was really a trial run to see if we could work together. I don’t think you will get any answerrs but what it does is give you the opportunity to rationalise your feelings, organise and voice your concerns and draw your own conclusions as to the way forward. Ten years on I’m a lot stronger than I was and during those 10 years my femininity returned, I feel I am me and I know the feelings I am going through now are normal and acceptable.
If I can help in any other way please let me know, either on here or by private message. Good luck and I hope you get stronger day by day
Shazza x