The wait seems like a lifetime

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My mum was told she has stage 4 cervical cancer 3 weeks ago and has spots on her lungs too, I am absolutely devastated. She's been poorly since mid May and kept getting told to try different antibiotics for a suspected water infection from her gp surgery, I knew there was more to it as my mum went from a happy always on the go woman to being floored and could only lay down due to the pain. Finally after some fights we managed to get her admitted and we were told originally it was a cyst on her kidney but the following day after a ct scan and biopsy she actually has stage 4 cancer..its been so much to take in. The waiting is making it so hard, so that was 3 weeks ago and today we finally have an appt for the oncology consultant to call my mum in another two weeks time. Its likely she will have chemotherapy every 1 in 3 the macmillan nurse has said and a total of 6 cycles. 

Last week she had to have a nephrostomy bag/tube put into her kidney as her tumour is blocking the tube from her right kidney to her bladder. 

She's currently taking tramodol for her pain but she has no energy, it's like she can't make the most of her life and I'm so worried about her, she's lost so much weight and muscle mass and I've never ever seen her this way, it breaks my heart. I see her 4 times a day and cook her meals, it's hard work at the moment as it's the summer holidays and my two children come with me which is fine but she can be agitated some days. I am 35 and I feel like I've gone back to being a clingy baby where actually all I want to do is be with my mum 24/7..that's the only way I can describe it. I feel guilty that this summer holidays isn't the greatest for my children too. I've already lost my dad 8 years ago and I am so scared of loosing my mum. I know it's my mum going through all of this but I just needed to get it all out really. 

The waiting is the hardest, two/three weeks waiting feels like a lifetime to cancer patients and their loved ones

  • Hi   and welcome to our group.

    I can feel all the fear and worry coming through your post as you come to terms with your mum’s recent diagnosis and I‘m so sorry you are all having to deal with this-it’s like your world turns upside down and you start spinning out of control. We all understand how difficult the waiting is in this process too-we want things to be moving quickly in terms of getting answers and getting treatment started but things seem to take so much time. But there are lots of steps which need to be completed in terms of determining and arranging the best treatment.

    You are clearly doing your very best to help your mum and that’s a really tough job, especially when you have young children yourself. Please remember to think about you in all of this and what you need to be able to keep functioning and take care of your mum’s needs. Do you have anyone else in the family or among your friends who can help you? Maybe help out with the kids for example to allow you to focus on your mum when you are with her? It can be a full time job in addition to your own life and it’s hard to do that on your own. Plus you need some time for yourself, even just to recharge your batteries ready for the next day.

    The guilt feelings are natural as you try to help everyone and don’t feel maybe that you are doing enough. But try if you can to know that you are doing your best-your love for your mum comes through your words here and your best is always good enough. It’s understandable she will be agitated at times if she’s in a lot of pain as that wears a person down, and it will be important to make sure that her pain relief is adequate. Her team should monitor that to be sure, but don’t be afraid to speak up yourself and ask questions. The tiredness is natural, but is your mum continuing to eat and drink? Maintaining her hydration with plenty water is important in particular with a nephrostomy.

    I’m assuming that you are getting help maybe from a district nurse visiting to help with the nephrostomy care? I do hope so as you should be getting help with bag changing etc. 

    We are a mix in this group of patients with cancer and family members dealing with this, so you are very welcome to be with us and post as often as you want-there will be someone to listen, and you don’t need to feel alone. Some ladies in the group may be able to offer some advice when it comes to chemotherapy, depending on the drugs your mum will be on. 

    Meanwhile I’m sending you a big virtual hug, and assurance that you are not in your own.

    Sarah xx


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  • Thank you for replying Heart

    I will chase the District nurses up actually as we haven't heard and was just sent a box of bags through the post..maybe they are expecting us to do that?

    Thank you x

  • I think I would check up with the district nurses. Has anyone explained the process of changing the bag and taking care of the site where the nephrostomy goes/the dressing etc? It’s important to try to avoid any infections so I would have thought a district nurse would be making some visits to check on how things are. It’s important that you feel comfortable with dealing with this as you will be the person to help with it. 

    Sarah xx


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  • No, she has a dressing change at the doctors tomorrow which is day 8 but we've heard nothing about the change of bag. I will speak to the practice nurse tomorrow and may even take a bag to see if she can help me to show me.

    X

  • I am sending you a virtual hug having also been in your position too x I understand you feel like your world has been turned upside down xx sending you and your mum strength and love x

  • I hope you’ll get some advice today  

    Your poor mum being left without advice or help with this is really not good. I’m so glad she has you to speak up for her.

    Sarah xx


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    Cervical Cancer Forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm