Monthly Archives: March 2017

Finally Fibroid Free.

The 24th March was a date I was looking forward to with excitement, dread and apprehension. Knowing I had been cancelled three times previously I optimistically hoped that they wouldn’t cancel again. Arriving on the ward at 7 am I was concerned there was nobody else there, no staff or new admissions. The nerves were kicking in around 7:30 as more people arrived and were ticked off the list of admissions by the receptionist. We were called up one by one and asked to follow a nurse into a room containing six beds. We sat on the bed and began the admissions process, signing the consent form (my operation had changed from myomectomy to hysterectomy) and getting changed into some weird pair of what looked like crocheted pants and a gown. I was first on the list (something tells me they wanted me done and over with) , it was around 9 am when a nurse walked me down into the anaesthetic room, in there I asked the anaesthetic nurse how many times they had cancelled an operation at this point, “never” she replied. It was actually happening.

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The next thing I remember is waking up in recovery with a nurse who was telling me her name, which actually annoyed me as I believed she’d already told me that, and thinking I didn’t want to be laid down, I’ve since found out I actually tried to get up while in recovery. I wasn’t really in much pain but I could feel something different in my lower abdomen. The next few hours are a blur, my next memory is being with Becky in the same room we were taken too, I was feeling sick and felt like I was watching everything happen around me without really being there (does that make any sense?). I was on a patient controlled  morphine pump and although I don’t remember ever pressing it I certainly didn’t feel with it. As I came round more I asked the nurse to take it away, it wasn’t a feeling I appreciated and the pain wasn’t that bad. As the day progressed we were moved to a different part of the ward to wait for a bed to be free on a different ward for the rest of my stay.

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The wait to be moved seemed to take forever, it wasn’t until 12:30 the porters arrived to take me down to ward 24. The journey down was surreal turning corners, feeling every bump and watching/listening to the porters talk about random things all whilst trying to figure out what is going on. I was placed into a side room, met the nurse on duty, given some painkillers and finally I could settle. Waking the next morning was strange, I hadn’t realised how much the fibroid had been taking out of me but waking up I felt so good, yes there was some pain and yes I was tired but everything felt so different from just 24 hours before. As the day progressed drips and catheters were taken out , it finally felt like I was on the road to recovery. Although I had been told there was a good chance that I could go home on the Saturday the nurse stressed that I’d been through major surgery, she wanted to keep me in and to be fair I was in no position to argue. The pain was up and down but other than the feeling of trapped wind it was nowhere near as bed as I’d feared. I even ventured for a walk to the day room and back (literally about 50m in total), it was good to be up and about but the walk reminded me just how much my body has been through and how far I’ve got to go to be back to the activities I love.

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I’ve been honest about my experiences with the NHS recently and it’s important that people are aware that our “free” health service is facing these issues but at the same time it’s also important that people are aware of the fantastic work the health professionals do. My stay in St James’ was virtually problem free (the only issue being having to wait until gone midnight to be transferred after the op), the nurses were lovely giving space to rest and recover whilst getting on with their jobs, even chasing the doctors to do the discharge notes so I could leave. They genuinely seem to care about each and everyone of their patients whether it’s 1am or 1pm. They really are a credit to St James’, the NHS and themselves.

Ward rounds on Sunday a lovey Irish doctor told me I could go home and after a wait for the paperwork I was sat in the mother in laws car on my way home. On more than one occasion I felt like my insides were going to fall out of my incision site – damn you pot holes. Being home is a huge morale boost, basic tasks such as sitting down and standing up are still tough and take twice as long as they should. Coughing is a challenge, you try as you might to hold something against your stomach to ease it just a little yet each pathetic sounding cough feels like the stitches could split. It’s all worth it though knowing I am now fibroid free and can look to the future.

So the surgery I’ve actually had was an abdominal hysterectomy with vertical incision. They’ve removed my uterus, cervix and fallopian tubes plus the fibroid through a 5-6 inch cut from my belly button down. The reason for cutting down instead of the traditional bikini line cut was the size and position of the fibroid (approximately 15cm). It’s early days (3 days post op) but I am so pleased I opted for the hysterectomy. Everyone is different but the effects of the fibroid and the knowledge that there’s always a chance the problem will return helped me make the decision. Keeping my ovaries means I’m not facing early menopause and I look to the future without worry of fibroids, cervical cancer or other “women’s problems”.

I’ve got to say how lucky I feel to have the support I do at home. The mother-in-law has been amazing baby-sitting the animals and the wife. Becky has been by my side through everything, no matter how moody, angry or annoying I’ve been she has taken everything I’ve thrown at her. The past few days she has been by my side at all times, sitting with me whether I’m awake or sleeping, getting up at 3 am to help me downstairs when I couldn’t get comfortable and helping me with everything and anything. I really wouldn’t have wanted anyone else there, and the words in our vows and wedding song really do hold true.

 

 

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Another cancellation – Where to next?

This year one of the challenges I’ve set myself is to not get angry or worry about things that I have no influence over. If only I’d have known how challenging this would be.

I’ve tried to be honest throughout these blogs, whether the focus has been on fitness, events, feelings or physical well being and plan to continue this throughout this journey to surgery, recovery and back to fitness. So here is an update on my recent experiences and their impacts.

When my operation was cancelled for the second time I found it tough to move on and carry on with everyday life, just waiting for the third date. The constant questioning and sympathetic looks or comments that are well meaning just wound me up. So when the hospital called with a new date I told very few people. In the build up I tried to remain positive, “third time lucky” and all that. Despite my best efforts I don’t think I every truly committed myself to the possibility of the surgery actually happening, I was anxious about the surgery but more scared of the feeling of disappointment at another cancellation. Things began to feel real the night before, packing my hospital bag I was left wrestling with myself, was I really prepared? Am I really patient and disciplined enough for this recovery process? Would it actually happen?

The morning of the surgery I got up half an hour before I was due to fast to eat some fruit, then went back to bed contemplating what the day ahead might bring. The nerves really hit in when the phone rang. I recognised the number immediately. My heart sank. With trepidation, I answered and to my surprise it was the nurse asking if I could go in early. After discussing my breakfast, it was decided that an earlier slot wasn’t an option but I was reassured everything looked positive. Arriving on the ward everything felt real, the journey to “normality” would soon begin. We sat and waited in the reception area watching other visitors eat and drink and come and go for their appointments, one and a half hours we sat there with the only update coming when I asked the receptionist what was happening – “they are just waiting for the bed to be ready” I was told. The longer we sat there the more convinced I was that not all was well.

A voice I recognised called my name, it was the nurse that had called me 24 days previously to cancel my operation. We went into a side room where she began “it’s not good news I’m afraid”, following it with something about a bed crisis. To be honest I didn’t really listen to her, and my response was not particularly positive, how many times can this happen? what happens now? and how much longer do I have to live through this? She explained that these decisions were not taken lightly and when we fired a response of how long can this go on for she confirmed that actually cancelling “electives” was becoming normality over the past few months (note to self must time needing the NHS outside of the bed crisis next time). She could offer no other advice, no clue as to where I go from this point, other than confirming that my operation wouldn’t be happening within the next 4 days and would therefore fall outside of the NHS 28 day pledge. Her only other comment was that the surgeon (who had never spoken to me let alone met me) wanted to know why I had chosen a myomectomy over hysterectomy – Do they really think this was an appropriate time for this discussion? I left the room with anger, frustration, confusion and sadness all flying around in my head, I wanted to scream, shout, kick and punch yet here I was sent away with no answers, no support (other than a leaflet) and expected to just get on with it.

I called St James hospital Patient Advise and Lisason Service (PALS), these guys apparently deal with complaints and ease concerns over issues such as operations cancelled at short notice. The lady I spoke to was quick to comment that my experience was “not good”. She then told me she had logged the issue and someone would be in touch within two working days, since this was a Friday it would be Tuesday before I heard anything – this also happened to be the 28th day from the previous cancellation. Why did I feel like I had just called a helpline and reported my kitchen appliance wasn’t working? Not happy with this response I called Leeds west CCG, the response? Pretty much the same only I would be left until Wednesday for a response.

Tuesday arrived and no response, I called, left a message and eventually got a call back from a woman who was as rude and patronising a woman as I have ever spoken to, she gave me the feeling that I really was nothing but an annoyance to her. She offered no advice, no date, no new information other than I needed a new pre-op assessment and that “they were not working to the 28 day pledge”, that was that! When I asked her whether she would be happy if her family member had received the service I had, she told me she could no longer help, a manager would call me back and the phone went dead. Yes St James this is your PALS service, I’m sure you are proud! Leeds west CCG was just as helpful with continuous empty promises of phone calls back. I found myself a week on with no answers – for those counting that’s 7 of the 28 days wasted.

Desperate to make some progress I took matters into my own hands, called the secretary of my original surgeon. In that phone call I had a (potential) new date and a phone consultation with the surgeon. If I could do this in one phone call why was the hospitals own organisations having so much difficulty? The date was some weeks off and so I continued along the PALS and CCG route in the hope of a sooner date. After numerous more phone calls I finally received a call from Emily – GM of women’s services. Firstly, thank you for actually apologising and at least acting as if you were listening to my concerns. Unfortunately, the information you gave was so far from reality it could be filed in the “fiction” department.  I was given a new date, a number of a secretary to call to arrange a pre-op and everything looked hopeful. I called the number and was told the list for that date was full and there was no way I would be placed on it since…..wait for it……none of that surgeons cases ever gets cancelled – not only that but (in her words) it shows how out of touch management is because she doesn’t even deal with pre-ops. Imagine, if you will, you are a patient that has had numerous cancelled surgeries, you are given hope, made to feel like someone was actually listening and trying to help then you get this response.

The final straw for me was calling the CCG to tell them about the call with Emily and subsequent disappointment of false information. I explained how I’d arranged a surgery date and a phone consultation but just needed help arranging a pre-op, I’ll look into it and call you back was the response. Less than an hour later I actually received a call back, “Good news” it started, now here I was thinking they’ve sorted everything out, everything will be moving forward someone is actually going to help. Then she continued, I had been moved from the surgeon who’s list was full to my original surgeons list and her secretary would call to arrange a pre-op. Hardly good news and proof of just how well they listen since this was the information I actually called to tell them earlier. Hoping for something useful to come out of the conversation, I asked what the chance of the surgery happening and what happens if it’s cancelled again – the response well we just have to hope that it’s not and if it is call her back. With that my “complaint” was closed.

Throughout the past two weeks of calling numerous people, waiting for call backs, listening to empty promises, trying to arrange operation dates, pre-ops etc, I still had to hold down a job, manage constantly fluctuation emotions, pain and fatigue as well as holding myself together while every Tom, Dick and Harry gave useless advice or commented on how frustrated they were. Not exactly a walk in the park.

I’m aware that there are individuals in greater need of a bed than myself, but I’m also aware of those that are medically fit but in need of social care beds or care packages that are left in hospital beds because of issues within these systems. My frustrations – beyond the obvious of 3 cancelled surgeries, 2 on the day, 1 whilst actually on the ward – if as stated by the staff this is becoming a common issue there must be an outlet that is able to deal with those of us lost in a cycle of preparation, disappointment and uncertainty. A complaint/liaison service that allows people to express concerns and have these dealt with in a swift and reassuring manner should be the corner stone of any organisation with such fragile systems.  This is not the first time we have experienced a bed crisis in the NHS, nor will it be the last!