That Limbo Feeling

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My timeline started mid 2020 , I had my single mastectomy towards the end of 2020 then all the treatments they could throw at me. The treatments ended April 2021, They said they had to send me to a different hospital a little further afield for my reconstruction surgery. I met that team at the end of 2022 and now I feel like I am trapped in limbo waiting and waiting!! Each time my annual check up comes around it knocks me sick and I pray for the all clear. Each time I see a hospital letter I pray its my surgery but no. My headache has been the lack of communication with the hospital. They gave me a date that covered a big birthday for me and told me not to plan anything, so the family and I had to reschedule a holiday and social events and my husband has had to put a lot of job development on hold in case he gets the call I am going in. We have all been effected by the lack of being able to get word off the hospital what is going on. My local MP has been involved and the waiting list delay was sent to the local news station. After everything the country has been through for people diagnosed during covid would communication off our hospitals been helpful? I know for me it would help just a sort of check in to ask are you coping ok ? Advice on how to ensure you can find resources to look after your body and your mental health. My mental health has taken an epic beating I do not recognise myself at the moment I plod on for my kids but my god do I want to just be whole again and move on. I feel like I am in a postcode lottery there are parts of the country where they are whizzing through these ops but me I am under a part of the UK that isn't whizzing through them.               

  • Hi  

    It sounds like you're going through a lot and I can understand your frustration.

    I haven't been in your position but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

    While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • Hello, I totally understand and sympathise. I have mostly managed to keep my spirits up during chemo and surgery. But now there is a delay in scheduling my radiotherapy and even if in the big scheme of things it is not that big iit has had a horrific impact on my mental health. Like you I feel I just about manage to go along for my kid and my family but don’t know where to find the energy from anymore even for little things. But it really helps to know that I am not alone and these feeling are not just my failures. We are dealing with a huge physical and mental challenge and having to fight administrative processes and systems is exhausting even for people in full health. You are not alone, you can do this. I am sending you energy and sel-compassion. . 

  • thank you ! stay strong Iryvenir i have been on this platform for a short period of time and i am happy i have found it.