Category Archives: nhs

NHS courtesy calls and what’s next?

Eight weeks ago I had a six inch vertical cut made in my lower abdomen and the vast majority of my reproductive system removed along with a large fibroid. This week I had my first post-op contact with the gynae team at St James. No there was no anxious waiting in a busy waiting room, no examination of the incision site, no shaking hands with the surgical team, in fact there was no face to face contact.  What I received was a “courtesy call” (their actual words), now in my experience a courtesy call is what you receive after making a purchase or hired a car, never have I associated “courtesy calls” with major surgery (Surgery serious enough to have strict protocols including lifting nothing heavier than a kettle for 6 weeks). What made the “courtesy call” even more unbelievable was that the sister making the call had no idea whether I’d had key hole, bikini line or vertical incision. I was left trying to describe the blister like area of my incision (perhaps if the courtesy call is the way to go they could introduce the use of WhatsApp for such an occasion), a challenge the sister could only respond to by instructing me to go and see my GP. I feel lucky that, blood clot aside, I’ve had a relatively straight forward recovery which I attribute to preparing myself physically and mentally both for the surgery and the recovery.

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It’s fair to say that between the cancelled surgeries cancelled surgeries and minimalistic follow up care (I was also left waiting on the line while she fought with the system to find my histology results.) I’ve been less than impressed with the NHS. I really feel for the clinical staff who quite clearly are frustrated at having to deliver a first class level of care on a third string budget and support system. NHS aside I’m now 8 weeks post-op and getting back to more and more “normal activities” everyday, the countdown to my first post-op fitness challenge is on.

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It’s now just 9 weeks until I take on my first ever triathlon. It may only be a Super sprint (Castle triathlon series, Castle Howard), 400 m swim, 20(ish) km bike and 4 km run (or something along those lines) but it’s a bloody triathlon. At this point My max bike ride has been 6.5kms and I’m on run 1 of week 2 on C25K, not running more than 90 seconds at a time. The most worrying think is that these two disciplines only come into play if I survive the 400m open water swim. Having had to cancel two challenges that just came to soon post-op I really can’t wait for this. This triathlon has really been a motivation on the days when I was sore and didn’t want to go for that walk, or do the same rehab exercises for the umpteenth time.  It also helps to know that my wife and mother in law are doing the tri too, everyone knows you can’t let your mother in-law beat you. I wonder if Castle Triathlon Series know what they’ve let themselves in for.

hospital visits and being patient. – week 2

This week has been full of challenges, reality checks and frustrations. But that’s two weeks down on this road to fitness, two weeks closer than I was prior to surgery.

I mentioned in the last blog that I had been experiencing some calf pain and a cough, after getting sick of me complaining (only joking) Becky insisted we find out if this was something to be concerned about. I called the ward and was told to go to A&E just to be on the safe side. So despite my arguments off we went to A&E. Not exactly feeling at my best it took all my strength not to unleash hell on the doctor who examined me. I was left feeling like I was wasting his time (because spending 4 hours in A&E on a Saturday is one of my favourite pastimes), tutting at the speed I took to move and get on the bed and asking me what I thought was wrong, if I knew that I’d have saved us both the time! Following his examination I was told he thought I was ok but wanted to do some tests in case I had a blood clot on my lungs which is potentially dangerous. The tests an X-ray, being asked if I was pregnant was an obvious irritation here, and blood tests came back potentially positive. I say potentially positive because they aren’t always accurate after surgery apparently. I was given a blood thinning injection in my stomach (ouch!) and told to come back on Sunday for another then more tests on Monday. Monday was a long day of tests and waiting for results, thankfully because the results take so long to come back I was allowed to go home and try to get comfortable – hospital chairs for hours on end are not comfortable at this stage. Thankfully the call came to say results were in and everything was fine for now and just stay aware of the symptoms and go back if anything changed. We’ll never know if it was a clot and the drugs did their job or if the symptoms were just down to the surgery and/or cough. Either way I’m grateful that Becky made me ask the question and that in the end everything worked out.

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This whole experience gave me more food for thought and prompted yet more frustrations. You see the only advise I’ve been given is to take it easy, yet taking it easy leaves you open to the risks of these complications. I was given no exercises or advise to prevent these complications and aid recovery, this may be because I was placed on the breast ward rather than the gynae ward post-surgery. Instead I have had  to research  and find advise given by other NHS trusts on recommendations for recovery. Everything I’ve read suggests the benefits of walking, which I have been doing since day 1, most documents suggest that at this point the majority of women are walking for up to 10 minutes, I’m now at around 20-25 minutes max, is this too much or am I ok if I get no after effects? I now have a series of 5 exercises, (ankle rotations, knee extensions, pelvic floor exercises, pelvic tilts and knee drops which I do 5-10 reps of 2-3 times a day and stop with any sign of discomfort or pain. This seems to be the consensus amongst the documents and with no post-op follow up scheduled I guess it’s the best I’ve got right now.

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Patience and discipline really is being challenged at the moment. Mentally I’m raring to go, physically I feel like I can do so much more than what I am doing which is leaving me with a constant battle between my heart and head. My heart wants to get moving, start regaining some level of fitness whilst my head knows that my body will take time to heal. The external incision is virtually healed but I know that the soft tissue internally takes much longer to regain it’s strength and recover. I’m increasingly fighting between the need to rest (and nap) with my inherent dislike for laziness, Ok I know its recovery and not being lazy but still!! I keep trying to tell myself that being disciplined now will allow me to do the fun stuff sooner, not that that helps when the little chimp in my head that wants it’s fitness now!

 

1 Week on.

 

A week on from my hysterectomy I am surprised by how well I feel. I was aware of being in pain and tired for the past few months but not at quite how much this was affecting me. The change was almost immediate. Now don’t get me wrong the surgery hurts, basic movement (sitting/standing, walking etc), laughing and coughing are hardly a walk on the park right now. I’ve also found a new hobby of taking regular naps, the likes of which I haven’t enjoyed since being a toddler. I’ve had some issues with a cough and random leg pain but even so I feel raring to go and am consciously putting the breaks on my activity levels.

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The most difficult aspect of recovery for me so far is the lack of guidance/timescale for rehab. With previous injuries I’ve been given guidelines and milestones to work towards, with this you’re told “you’ve had major surgery, take it easy for 6 weeks”. What exactly does “take it easy” mean? My taking it easy is probably quite different from a lot of the women having this surgery. I have researched and searched forums for basic guidelines which at the moment is helping me set very basic targets and map out my journey for the next couple of weeks.

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Activity wise I’m pretty mobile already. I’m walking slowly but fairly freely, I’ve taken short walks around the local area and even to the pub and back. I try and have something booked in everyday and that’s my aim for the day. I’m learning the warning signs and call it a day if I feel any discomfort or pulling/soreness and am careful to have plenty of rest throughout the day. Prior to the operation I’d read about how uncomfortable seatbelts were after this type of surgery, I can honestly say I have had no issues with this at all. The potholes however, now there’s a different story.

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The biggest surprise for me has been the emotional toll of this surgery. I’m sure that much of this is relief at it finally going ahead, that and a natural reaction to the drugs and trauma of surgery. However I have been surprised on more than one occasion by an ever stronger desire to cry for apparently no reason. His was one side effect I wasn’t expecting.

 

Pain wise I’m pleasantly surprised, I’ve taken nothing stronger than paracetamol and ibuprofen, even that has pretty much stopped other than at night. All in all I’m one week post-op, feeling ok, if not a little frustrated. The next few weeks are sure to bring their challenges, but with the support I’ve got by my side I’m sure I will make it out the other side a stronger and better person.

 

 

 

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.

 

 

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!

Spare bed anyone?

As I write this I can’t help feel a sense of deja vu.

Its just over a month since my original surgery date and the phone call cancelling it due to a “lack of beds”. The new date I was given was 31st January, my dads 50th birthday and the last day of our first planned trip since all this began. Fast forward to the 3oth January, the whole day my partner and I were on edge everytime the phone rang, the perfect way to prepare for surgery, but the dreaded call never came.

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Having spent the weekend in Dorset we cut our break short and made the long drive back to Leeds, set the alarm for an early breakfast (I was to fast from 6am) and I started to believe this surgery might actually happen. I was woken at 8 am by a phone call. I recognised the number straight away. My heart sank. It was the ward sister telling me not to eat but not to go in either, they were trying to find me a bed but it didn’t look hopeful. So there I was stuck between preparing mentally for a surgery that may then be cancelled, or, preparing for it not to happen and then not being ready if it did. For 4 hours I was left in limbo not knowing what was happening. When the phone did ring I was told the surgery was cancelled, not by an administrator but by a ward sister. A lady who had no doubt spent much time, effort and money training to look after patients not chase beds. Anger, frustration and disappointment all needing to be released, but you could hear all of these in the sisters voice.  I was then told that because they had cancelled the surgery I would be made a priority, funny, they said that last time!

NHS notice - This is a bring your own bed hospital

The surgery I was due to have was an open myomectomy, similar to a C-section but rather than deliver a beautiful baby they take the fibroid(s). The surgery requires a short stay in hospital, a recovery of 6-8 weeks (as a supply UQT I am only paid for the days I work and therefore loose 6-8 weeks pay to have surgery) and is termed an elective surgery. Elective surgery, the very term suggests it’s a choice. Yes I opted for surgery over an extended period of taking a synthetic hormone with mixed research that has only recently been licensed for extended use (A treatment I did try for 3 months and with side effects including pain and extreme exhaustion that made it difficult to function effectively). What I did not choose was to have fibroids, a condition I and many other women live with daily, a condition which has had a huge impact on my ability to work and maintain the hobbies I enjoy. As a result of this condition pain and fatigue are daily battles, my teacher training has been put on hold, holidays affected and family events missed and/or postponed. So to use a term that implies “choice” seems insensitive. I am not writing this for sympathy, I am aware there are people worse off than me, but more to raise awareness of the issues caused by fibroids and that whilst news reports are no longer covering the “crisis” it is still there. How long can a situation be termed a crisis before it become normality? If it becomes normality at what point does accountability raise it’s head and solutions begin to be found – a question for the administrators out there.

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So for now I am concentrating on my resolution to not waste energy on things I can’t change, admittedly with mixed success. I’m continuing to prepare for surgery whenever that might happen. The first time around I was ready mentally but not physically, this time round I was more ready physically but less mentally, maybe next time I’ll be good to go fro both perspectives. All we need is a new date and a bed, if not I may have to take an airbed with me.

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For those interested here is  my journey with St James hospital Leeds, since I entered the system of “care” at St James I have never seen a consultant, took Esmya for 3 months and have not seen a single member of staff from the department since 29th September.

July-September – Outpatient appointments all with different registrars.

September 29th – Consent for surgery signed – Esmya treatment began.

Early December – Pre-op (at Leeds General infirmary)

December 31st – Initial surgery date with Dr Tay (Cancelled on 30th December)

January 2017 – informed by Dr Tays secretary she is away and the next date available is late February.

January 24th – Given a cancellation with a new consultant for 31st January

January 31st – Surgery cancelled for the second time.

What does the future hold?