So here I am. I made it through my operation for stage four ovarian cancer.
My surgery, which was already going to be quite racial, ended up being even more extensive than originally planned, with all of my reproductive organs being removed plus three other organs completely removed and 4 partially removed.
No… I didn’t realise you could have so much removed at once either!
I went down to theatre at 9.30am on Monday 9th May 2016, where I was taken straight in to have my epidural. Due to the requirement for me to be put to sleep immediately afterwards, my husband was unable to join me for this part and so I had been feaking out about this all morning but the anesthetist team were exceptional. Recognising I was anxious they took their time talking to me and reassuring me. As it turns out my anaesthetist and I have a shared favourite Indian restaurant so I was comforted talking to him about the place as he did his work – I’m easily distracted by the talk of South Indian food!
Following the epidural, the team lay me down and got me ready to be put to sleep. I thought I’d still be anxious at this point but they were very kind and kept talking to me until I drifted off.
I don’t remember much of being in the recovery room following surgery but I’m told I was in there for a few hours. All I do really remember is a lot of people around my bed, beeping machines and falling in and out of consciousness.
I also don’t remember being taken to the High Dependency Unit (HDU) but I do remember my husband being there.
I know my parents and sisters came in to see me shortly afterwards too (I’m told it was about 1am by the time they were allowed in) but I don’t remember much else thanks to a wonderful cocktail of drugs and the epidural being left in.
When I woke on Tuesday 10th I was in a whole new world. I slipped into sleep quickly and easily and I wasn’t ever really aware of the time, just the many different medical and surgical staff coming to see me for checks and medication. At some point my surgeon came in to explain what had happened during surgery:
- My operation had lasted 11 hours.
- They had conducted a complete hysterectomy – removing my cervix, womb, ovaries and right fallopian tube (I only had one prior to surgery due to a previous operation)
- They had removed my omentum
- They had removed my appendix
- They had removed my spleen
- They had removed part of my colon
- They had removed part of my liver
- They had removed part of my diaphragm
- They had removed part of my pancreas
But, most importantly:
- They had removed all visible disease!!
This is certainly no small achievement with a stage four cancer patient! And, although I’m still only part way through my journey, it was exceptionally great news to hear (I’ll receive further, detailed updates over the next few weeks).
I spent the rest of the week in HDU receiving oxygen and although I tried to remember everything (after being told that people often forget their time in HDU) I remember only snippets. But I did ask my husband to take a daily photograph which he kindly obliged to do. It frightens me to look at how ill I appeared at that stage so soon after my surgery but it also allows me to see the progress I am making now.
My epidural was left in for a few days, however it only worked on my right hand side so, although my pain was manageable I struggled to move and I felt nauseated all of the time. In order for the nurses to check where the epidural was working they would rub a piece of ice over different parts of my abdomen and legs every couple of hours – an oddly settling sensation when you are lying in bed for days burning with heat. Having the epidural in for the first few days meant that I was unable to get out of bed and so the nurses had to change my bed with me still in it!…a tricky task involving plastic pull sheets and discomfort!
The feeling of constant pain is hard to describe. It’s never easy to get someone to understand what someone else is feeling, but I think the main factor with the pain was the frustration it caused me. I was suddenly unable to do so many things I’d taken for granted previously. I couldn’t sit up or roll over. I couldn’t wash myself or brush my teeth. I couldn’t eat or drink due to the need for my colon to recover post surgery. The list goes on and, at that stage, was seemingly endless and the light at the end of the tunnel still very dim.
A turning point for me was when two physios managed to help me do a 60m walk using them and my drip for balance. Although I was knackered the following day I began to realise that I was slowly overcoming all of the things I couldn’t do and starting to build up the list of things I could. Taking advice from someone I deeply respect who has had to overcome similar physical challenges, I started to make a note every time I achieve something I hadn’t before: the first time I brushed my teeth unaided in bed; my first mouthful of food; the first time I manged to wipe my own face; the first time I managed to sit beside my bed rather than in it. Baby steps yes, but each hugely significant in my recovery journey.
One of the things I thought I would find most challenging was the nurses helping me to wash me whilst I was still bed – something that I thought would be awful and degrading but was always done in a manner to ensure my utmost modesty and comfort. And, let’s be honest, when you are in that much need of care and support you are beyon caring about such trivial things as how you are washed, so long as you are comfortable. That said, the first day I was able to wash my own arms and face while they just washed my legs and back was utter heaven!
This week I’ve been back on the normal ward but I’m now struggling with new daily physical and emotional battles:
- I feel nauseated all of the time and so don’t eat much which, as anyone who knows me will confirm, is completely out of character and hugely frustrating for me.
- I am completely exhausted. I still fall asleep often and struggle to converse due to breathlessness.
- I am always in pain. Whilst I’m certainly not in the pain you would expect from this much surgery, thanks to so so many drugs, I am still obviously sore. This upsets me emotionally, rather than physically. In just 10 days I’ve gone from walking 3 miles a day to struggling to get out of bed unaided.
- I’m struggling to come to terms with the extend of what my surgey involved. Every time I think about it I feel sick. When I typed it out in detail above I was actually physically sick. It is certainly a lot to take in and come to terms with.
- I frequently brake down, hysterical from the emotional and physical burdens surgery has left me with. One night I was sedated just so I could settle for a couple of hours while me incredible(!) husband sat by my side until the early hours of the morning, holding my hand silently in the darkness.
- I feel a lot of anger and frustration all of the time. This is mainly around not being able to do simple things like self care but also because I have a throat infection and breathlessness and find it challenging to converse.
However, I’m also seeing progress with things I couldn’t do during my time in HDU:
- I am now able to lie on my side
- I can now have a shower without even the aid of a seat
- I can dress myself
- I can manage small bits of soft, cold food with the help of a range of anti-sickness tablets
- I can walk unaided, albeit over very short distances and slower than a tortuise in treacle
- I can brush my teeth at a sink unaided
- I made it to the front door of the hospital in a wheel chair and saw outside for the first time in 10 days.
Despite recognising my physical progress I continue to struggle emotionally much more than I had expected. You would anticipate such major surgery to be a physical battle but I think the emotional struggle is playing a much more significant role. Many aspects of my life will change as a result of my surgery and it will take time to learn how to adjust to and live with my new world. It is mostly so challenging to go through something that your nearest and dearest could never relate to – and you deeply hope they will never have to experience. It can feel lonely and frightening. Even the medical staff don’t know how you ‘feel’. At this time I find myself so grateful again for fellow warriors holding my hand on this journey, from which I hope great friendships will emerge.
My recovery will obviously take a number of months. During that time I’ll be learning to take each day as it comes and trying to regain my old positive sense of self.
I know my journey is long.
I know my journey is challenging.
Most importantly though, I know my journey is possible.
For now I just need to keep making daily progress and focus on getting home – hopefully soon!
Love and light, Fi xxx
I know people will have many questions but, at this stage, please respect that I am currently too weak to reply to messages and have shared all that I am comfortable sharing just now in the blog post above.
Comments of support and positivity below are very welcome – and indeed never more necessary! – but I am going through a lot of recovery and, with the best will in the world, do not have the strength to reply to loads of messages.
Just now it’s about me getting through the next phase so that I can begin to regain my strength.
I’ll write again soon xxx