Update on Jenny’s operation and week in hospital – October 2015

Jenny arrived back home from hospital at 9pm yesterday. She is a lot worse. Her heart was too unstable and her condition too fragile in the first place for her to be moved from her bed onto a stretcher, let alone survive a 6 hour ambulance journey to a hospital in London, being in the noisy and hostile hospital environment for a week and undergoing surgery. But the situation was life-threatening so the trip had to be made. Hospital is the worst possible place for very ill people, for whom sound, light, smell and movement (people entering the room constantly) is very painful and makes their condition deteriorate. We are hoping that the damage that Jenny has acquired during her week in hospital, especially to her heart, is not permanent. She had zero sleep while in hospital and can’t really cope.

Jenny is also in a lot of distress because the operation hasn’t been successful – she is still bleeding and the whole point of her enduring the hellish week in hospital with her deteriorating so badly and being in agony the whole time, was so that the blood would be stopped. But the surgeons wouldn’t perform the operation that Jenny wanted (a hysterectomy) because they were too scared that she was too ill to survive it and they didn’t want to be held responsible for that. So they performed an endometrial ablation (which Jenny didn’t really want but they gave her no other options; she was sceptical as to its effectiveness because of her research on it (and she was right; why is she always right?!)). The surgeon reassured her that the operation would render her amenorrhoeic, which we now know was a lie because she has been bleeding constantly ever since the operation and is in severe uterine pain. She has also had a bad reaction to the anaesthetic and painkillers that she was given afterwards. Her heart and body are in a bad way from the physical trauma of the operation.

While she was in hospital, she had to yet again face abusive and hostile doctors and nurses who knew nothing about her illness. She had different consultants visit her (unrelated to the haemorrhaging problems) who breezed in and out of her room to tell her just to get up and exercise. They told her that she was choosing to be ill and that she had to get up. Jenny can barely breathe or swallow, let alone sit up. She has an incurable degenerative disease, for goodness sake. They didn’t even look at her notes. Suffice to say, she burst into tears once the consultants left the room. The level of incompetence, ignorance, abusiveness and arrogance of doctors continues to boggle the mind. She has so many test results showing how ill she is; we don’t really understand why doctors continue to treat her so appallingly. It leaves Jenny distraught and traumatised. She never wants to see an NHS doctor ever again, even if she’s dying. She still has flashbacks from her awful hospital stay in 2011 when doctors told her that she was ‘a waste of space’, ‘a waste of life’ and tried to physically pull her out of bed, hurting her in the process.

The whole family have been pushed to the limits of stress, worry and exhaustion this last week. We are all shattered. At the moment, it’s a ‘wait and see’ situation regarding Jenny, to see if the operation might have a delayed effect and start working. Meanwhile, the level of her suffering has hit new heights.