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How do I find my support network? – Sophia’s Story

I am an older woman – 77- and feel very alone and unsupported. My family and closer friends are a long way away, and I did not feel able to leave everything and go to live with my daughter for a few months, having the procedure in her home area. It’s a lot to ask of her when she has family and a very busy life, and she lives hundreds of miles from my current home. I foolishly assumed I would be able to do more post-op, and also that there would be support via GP and hospital.

Now I find nobody will commit to a thing until after the op, so how can I plan? I did not expect a firm date or specific details at this stage, just to know what might be available on discharge. Nobody will even discuss it with me, and my daughter has been heavily criticised by the hospital staff on two occasions, which is outrageous. She has young children, a husband etc and to leave them for a month or more would be crazy. If the (small amount) of information given had been more thorough, I might have realised that I had little option but to go to live with her.

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I was supposed to have a chest X-ray – consultant wanted this pre-op – but it has been omitted from appointments and when I enquire I am told I can “have one post-op”. That seems crazy. I have good contact if I want it with nurses, but had just one meeting with consultant, and as others have pointed out, one does not have all the questions prepared when the diagnosis has just been presented and the decisions are being made.

So, I have ended up feeling very ill and strange, now think I am suffering from “fear of surgery”, had to go to A&E in early hours last week, and after hours of “dry vomiting” and exhaustion was given anti-depressant. Seeing GP today, but I know he is disapproving of the medication. However, he has given me a minute daily dose for the moment. I am seeing him today, with a list, but he never seems to know much or volunteer information.
I have often felt that I will get to the hospital and turn round and come away without the treatment. This is not typical of my attitude, but I am also recovering from the recent death of my husband. I had to watch him having ever more inappropriate treatment at the local hospital, and however hard I fought for him it was not enough.

Normally I would keep things to myself, but I want to say – help!! I will be in a town I don’t know well so that I don’t have to face the local hospital where my husband died, a couple of friends are making journeys to visit me, some of the nurses at outpatients have been very kind, but I need much more support or I am terrified I won’t go through with it, and that I am told would be a one-way street with pre-cancerous condition.

My nature is to get on with things and look after myself, but, will I even manage to get out of bed on my own? Will I be able to survive those first weeks with occasional help? I know everyone is different in their rate of recovery and their attitude to the op, but I do even at my age, feel I will be physically less and mourn somewhat the loss of what makes me a woman.

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in my own words book coverNow available on our online store and all other online book store’s. In My Own Words: Women’s Experience of Hysterectomy is full of many other real-life stories from women the world over.

Other people’s stories help women feel less isolated. They show that they aren’t going mad, missing the point or stupid.

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Linda Parkinson-Hardman

Transformational coach and founder of the Hysterectomy Association. Professionally I'm an information scientist who specialises in the adoption and engagement of digital technologies. I am a writer and author of nine books to date, and I've edited a further seven; phew what a lot for a Thursday afternoon :-)

This Post Has 9 Comments
  1. Dear Sophie,
    I have recently had a full abdominal hysterectomy and found post op support from professionals very difficult. My sister and husband were very supportive but neither knew what emotional affect it has ad on me and how going from a confident person to someone who cries at the most stupidest of things affects me. I also feel alone and tired I could not have any visitors until y 3rd week and even then was exhausted afterwards. I have a post check in 2 weeks time (6 week check) and feel no where ready to go back to work either physically or emotionally but just want to be able to speak to someone who exactly knows what I am going through.

    I just wish there were support groups to attend who can give advise and show post op exercises rather than give u one demo in hospital and a leaflet to read afterwards. My thoughts go out to you and hope things have improved and that your not on your own even though you may feel it.
    Best wishes
    Lynne

  2. Sophie I hope by now you are feeling a little better and more hopeful, I am also in my early 70’s I had my ab hysterectomy on 29th December after diagnosis for a large cyst on my ovary, thankfully it was benign, the specialist who operated on me was brilliant and let me home in 48 hours but I had no support at all afterwards and considering I had the op in a private hospital the after care was no better than NHS. My specialist did ring me after ten days to tell me the results but that was all, even the doctor’s at my local surgery gave me no help at all apart from offering tables. Your letter touched my heart because I know how I felt after it and I did have my husband and family near by. I just was so glad that I found this site as you find that other people have had similar post op symptoms and you get so much more consolation from it. I was also very apprehensive and extremely nervous before the op and was put on medication which did help, but afterwards it is a no goer, I hope you are feeling much less alone now and hope your operation went well, but you do feel so vunerable after it. Hopefully you can look ahead now and each day you will feel stronger and more able to deal with things as I did. I have a part time job and am now back a couple of days a week and enjoying it we also look after my grand daughter once a week so there is life out there after it. A lot of love to you x

  3. Hi Sophie, I am so sorry you have had such a poor response regarding your post op support, that’s awful. It is good to know you are home and have lots of visitors, you will get tired for a while yet but trust me it does get easier. I am now 5 months post op and I still get my tired days and I do have to remember that I am not super woman! You did make me laugh bringing back the momentous bowel movement moment… as they say it is the little things in life that mean so much, never thought I would be grateful to have one.. but it did at the time as it meant I could go home. With regards to the thoughts of joining your husband, it sounds like you have post op blues these do pass but if they get any worse please go talk to your GP.
    well dinner is calling so keep getting better and take one day at a time, I promise it does get easier and better…..hugs

  4. Some further comments on your replies:

    Thank you for all the helpful hints.

    I do order online as I am a non-driver, and so once a month or maybe less I get in a great deal, especially of course the heavy and bulky and non-perishable.

    A friend takes me shopping one Saturday a month, and today on my 2nd day home, she is getting some more fresh fruit and veg on her way home. As you can imagine, with most of my friends being my age with problems of their own, I don’t want to take advantage.

    I am told that when the district nurses come (today) they will talk about backup, but that will probably be for washing and dressing which is not so much what I need.

    I had a long talk with the Discharge Officer yesterday before I signed up and came home. That was again a circular discussion getting nowhere. I had done just as I was told, and nothing happened “because that’s not how we do things here”. Oh, for a seat at the Mad Hatter’s Tea Party which would now seem so calm and logical in comparison.

    It all brings back what I have always maintained – in the long run we are on our own and dependent on our selves. I am deeply grateful for any help when appropriate, but also shocked that at my age, after a lifetime of not asking for anything for me, it doesn’t matter that I can come home weeping, happy, tired, fearful, weak.
    I was able to prepare quite a lot for what might happen, but going to bed last night was a worry, I had to make the bed more tilted using an old sofa cushion, and it was not so easy to get up again. I have a stair lift from my husband’s period of illness, which I never thought I would use, but now I do – that’s just fortunate.

    For the op, I was called early because I told the very sympathetic anaesthetist that I was hyper-nervous, and when I came round I found I’d had a spinal block as well as the anaesthetic!! It took a while to get my legs back.

    There has not been much discomfort from the incision, only from the efforts required for the bowel opening on Sunday!! That was the longest 50 minutes of my life so far.

    I have been very alarmed at my inability to see life in a few weeks or months, which is very unlike me, and also by my wish to give up and go quietly with my husband. I cannot believe I have changed so much. That might be some pre- and post-op syndrome. If so, watch out everyone!

    Last night, my daughter (who has been laid low with a vicious virus since Saturday) and I sat at our own ends of the phone, wishing Dad/husband could be there, holding our heads when we threw up, offering a can of peaches (standard and effective remedy) when we felt a little better.

    Oh, and a postscript – I had visitors a plenty, but after two lots I wanted no more. It was infinitely more exhausting than I could ever have imagined to sit and talk. Visitors, please keep it to 20-30 minutes. You don’t always realise what you are taking from the patient!

  5. Thank you all for your comments. I have just returned home – in a taxi I ordered and paid for myself, I just wanted to be me again.
    Yes, I have asked/informed all appropriate agencies until I am blue in the face.
    It ends up each time with ” let social services know when you are post-op”. The hospital said they did this, but I don’t think so. There has been nothing, zero, no response.
    I have everything where I can reach it, and in a day or so I will get a cleaner to come twice a week, I have a freezer full of prepared food made by me, and all in the kitchen that I need is at waist level. My fresh bed was made and covered over before I left for the op. I can and do order online as I don’t drive, so my only concern now is outside contacts – but hey! I have the cordless phone and a mobile, people have over-visited in hospital so I had to put a stop to it – imagine!
    Finally, the hospital food was bad enough to make one ill. Amazing, all that money on nurses and equipment, a lovely room which I had to myself for half my stay, and yet the less said about the edibles (or non-edibles!!) the better.
    I am feeling very tired now, but will respond further later.
    Thanks so much for all the interest, and, it wasn’t the op that was the worst, it was the continual nausea, also the Ceremonial Opening of the Bowels – one of the worst hours of my life!!!

  6. I am so sorry to hear that no one is able to give you the information you need about your after care. I am not an expert on this and the following information is just what I have been told by friends with aging parents and an elderly neighbour after a stay in hospital. The hospital will not send you home after major surgery to an empty house. I was in hospital with an old lady last year and they would not discharge her as her primary carer her daughter was away on holiday. Various staff came to talk to her to ascertain what carers etc she had come in to help her. I also know from my neighbours recent stay in hospital and also a friends parents living in different area of the UK that you are entitled to six weeks of free care i.e. someone coming into your home once or twice a day to help with washing, dressing and food etc. Also for your food shopping could you make use of the on line shopping of various of the major supermarkets. If you don’t have use of a computer your daughter could do this for you from hers. The drivers of the supermarket I use are very helpful and will lift the bags of groceries into your kitchen. Also have you heard of the company Wiltshire Farm Foods. They deliver frozen dinners all over the country. You can order these over the phone or by computer. They will bring the delivery in and place in your freezer. Again I know a few elderly people who use this service. If you need regular prescriptions most pharmacists now deliver. Hope this information helps a bit and makes you feel less anxious.

  7. Hi Sophia, Your e-mail is so moving. Firstly let me say you sound like you need a hug, it will have to be a virtual one but the sentiment is the same… hug. Secondly don’t be afraid you are not alone and thirdly there is a lot of support out there if you now where to look. I really hope I can help in some small way. I would like to send my condolences following your recent loss.
    Now pre op…. I found this site a few weeks before my op last December and am still using it, we are a friendly supportive bunch on here of all ages. Pre – op you are bound to be nervous we all were, it’s nothing to be ashamed of, you wouldn’t be human if you were not scared! It does not help as you say with only being able to see your consultant once or twice before your op and not being able to plan, well I say that’s out rageous! I was very lucky I had the very best and she is NHS! ask those questions, after all it is your body, even the daft ones. My consultant nearly cried wth laughter when I asked her ” once you have taken all the bits out, what stops the rest of me falling out?? ” sounds daft but bless her she explained in detail and I felt better, and we had a good laugh. Post op there is support for you at home if you want it or at your daughters to take some of the strain off her. You can ask at your pre-op appointment to be referred to Social Services, now don’t panic, in most areas you can have what is called a “welcome home” package of care for up to 6 weeks. This is the suport you need until you get back on your feet, I was lucky I have a lovely fiancee who I know I drove mad those first few weeks, but the support is there all you have to do is ask for it. Sophia, having been though a total abdo hysterectomy I am willing to share my experience with you and pass along the tips that were given to me by my friends who have been through the same op, it effects us all in different wasy but we are strong aand find ways around the little daily issues. Please if you need someone to talk to….. huge hugs
    Meg

    (Meg gave her email address for you to contact her Sophia however for the sake of safety I have removed it. If you would like to contact her, let me know at linda@healthyhappywoman.co.uk and I will send it to you. Linda)

  8. Sophia’s story is the reason I wrote the blog post ‘How Many Women Does it Take to Change the World?’ which is here https://healthyhappywoman.co.uk/latest-news/how-many-women-will-it-take-to-change-the-world/ With a little more information and time taken to pass that information on, Sophia’s experience would have been healthier and less worrying. There was no need for it to be this way and it makes me so cross when it happens. Sophia, you need to talk to your GP and the hospital as soon as possible as it is outrageous that you aren’t being given the opportunity to plan.

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