Patience…patient

6pm July 30th, my head was pounding. I began to wake, in a morphine haze and found it hard to adjust to my surroundings. I searched for the comfort of my partners touch but alas it was not to be found. I was in H bay of the Frederick Salmon ward, St.Marks Hospital, Harrow. My partner had gone home the evening before, after I woke from my major operation.

It was a quiet ward with a lingering, pungent smell that I just couldn’t place. (I would later learn it would be the odour of emptying an ostomy bag). I was wheeled into the central bay on one side of the ward, with a lady either side of me and two opposite. Smiles were exchanged briefly, through sad, tired and pained faces. It appeared to be as much as we could muster at this time. I was left by the porters in my home for the next week and took everything in.

Prior to moving here, I had spent the past 24hrs in a high dependency unit. I had been through 8 hours of surgery to remove my entire colon and rectum. My surgery was done via a single incision and so the surgery had taken a bit longer than usual. I had woken from my anaesthetic, feeling excited and eager to see my stoma. I was however too drugged up at this stage to do anything.

I did however wake to find Nurses and Doctors fussing around me and a button thrust into my hands. I was told that this was my morphine and I was to press it when needed. The first button I was given didn’t seem to be working and so I requested it be changed. Now I couldn’t get the hang of the thing and my thumb was getting very sore. The nurse during my pre op had advised me that I should keep pressing the button, to ensure that if I dozed off I would still get a dose. So this is what I did…

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‘Miss Lawes, can I ask that you stop pressing your button so often’, requested the nurse. ‘Erm…I’m So sorry I was told to keep doing so to ensure I get the dose.  Am I doing it wrong?’ I asked, somewhat embarrassed. The nurse chuckled, ‘I understand, however the dose only releases every 5 minutes and all you need to do is press it at least once between each shot and it will set it. Listen for the click of course to confirm’. ‘Thank you so much and I’m sorry for misunderstanding, you must think I’m crazy’, I giggled. ‘Well Miss Lawes, you’ve been here 2 hours and pressed the button over 300 times, with just 32 doses being given. We were wondering if you were ok?’, she said with smiling eyes. Oh how I giggled! I felt very silly and when my partner arrived 5 minutes later, I had to be woken again. That morphine was good stuff!!!

So back to H ward. I had been transported to my ward and woken to find that my fluids had not been hooked up and I was beginning to feel very unwell. I called the nurse for her to hang the bag up, to which she replied ‘I’m already late finishing my shift, you’ll need to ask the next staff nurse’. I was too weak and in too much pain to question her, as she walked away in a hurry. Later the Matron would speak with me and ensure that it would not happen again. The nurse had been a French agency nurse and her bedside manner left much to be desired.

I lay there quietly, not wanting to disturb the strangers on my ward and felt the pain increase and the dehydration setting in. As the minutes ticked past, it was becoming unbearable and the gravity of what I’d been through in the past 24 hours had started to sink in. Whether it was genuine fear or the drugs, I felt incredibly overwhelmed and began to sob hard. I tried to stay quiet, so as not to disturb my neighbours but they would notice regardless of my attempts.

I felt a warm hand on my shoulder and a voice saying ‘oh sweetheart you’re allowed to feel emotional, you’ve been through a big operation. I’m Christine and the other ladies are Lily and Caroline (I can’t recall the other ladies name), and we are all here if you need anything’. I felt instantly comforted and tried to sit, to greet my neighbours. These ladies would be of much comfort over the following days.

Later that afternoon, I decided to take a peak at my new stoma. I had waited a long time for this moment and had put so much hope into this operation. I pulled the covers back and my gown up and took a good look. I wasn’t shocked in any way. I had requested this surgery, after 10 years of suffering with Ulcerative Colitis and too many failed drugs to mention. This was to be a new beginning. I quietly recited to myself ‘I don’t have UC anymore, I don’t have UC anymore’, and again began to cry. Words don’t do this moment justice!

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The next few days I would progress better than I expected and the ladies on my ward would make a huge impact on my recovery. We talked at length about our reasons for our stay and all found common ground in our journeys.

Lily was in her early 30s like me and had been through a real tough time, suffering with severe endometriosis that had destroyed much of her bowel functionality and chances of becoming a parent. She was on TPN tube feeding and no closer to getting better or home. She was married and a good couple of hours from home like myself, so our company was important to her. She isn’t on social media and is quite private with regards to her struggles and I respect that very much still.

Caroline used to be a Police Officer and was largely involved in the Utilitarianism and a huge Celebrity Big Brother fan. She was married with 2 beautiful daughters, one a Barrister and the other a nomadic living the simple life in S.Africa and doted on her only granddaughter. Caroline was a kind soul and had a huge effect on me during the few days we knew each other. She had come in to have surgery due to bowel cancer. She informed me that all hadn’t gone to plan and they had found primary cancer on her liver and she’d woken with a colostomy. She was finding it hard to adjust and found my positive attitude, really helpful. For her an ostomy wasn’t her choice, for me it was and she could appreciate the positive life changing properties of having one.

Caroline worked like a trojan horse to get home and engaged in her daily strolls and gentle physio. We were all incredibly sad but pleased she could go home to her family. I kept in touch online and enjoyed hearing her progress. She had a stair lift fitted and joked about her adversity daily. She was so inspiring.

Just 6 weeks after we met, Caroline decided to seek respite in a hospice. It would be here she would spend her last few days. Laying in the sun with her devoted husband Jim and still being grateful for life’s small beauties. I was very sad to hear of her passing. Her humanitarian views and big heart, inspired me more than I would realise and ultimately it would be Caroline’s encouragement and wise words, that would inspire the birth of Stoma in a Teacup.

Now let’s talk about Christine. Christine was in her 70s and a published poet. This lady was an absolute diamond who kept us all sane with her witty remarks and tantalising conversations about politics, history, feminism, art and poetry. We had many common interests and we found ourselves engaged in interesting conversation most days.

Christine appeared a very strong individual. She joked and smiled to make those around her feel warmth, however it transpired that she had nursed her dying partner just years prior and struggled with loneliness. There was no doubt she had many who cared for her but that one person who would be most engaged with her and keep her fire burning, was no longer with her. I encouraged her to talk about her partner and tell me all about their adventures, interests and discrimination at coming out as gay many years ago. I realised how lucky I had been, to be open about my sexuality in 2003 without much fear. Discrimination is of course still around today but it’s far removed from the stories Christine could tell me. Being secretive was the best way to be it seemed.

Now Christine amusingly called herself the ‘faker’. We were all in for major bowel conditions and she was in due to a rectal prolapse. She believed herself to be unworthy of sympathy, amongst all of us very broken ladies. I never saw it that way and we offered her much comfort during healing and all waited with bated breath for her to pass her first stool post op! She found my openness about poop and bowels quite refreshing and I believe it alleviated much of her embarrassment.

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One particular day I was feeling quite down. I was missing my family, so Christine wrote me a poem and I will keep it forever more. I remind myself of these ladies often and it gives me the drive I need to stay positive and chase my goals. They were all big supporters of my goals and believed I’d do a good job of raising awareness and supporting sufferers like myself. Caroline in fact said it was my destiny.

Christine went home the day before me and we stayed in touch via email. Lily was to stay in hospital a bit longer and I left 6 days after my surgery. We keep in touch via text. She now has a peg and is doing ok. As for Caroline, I think of her often and like to follow her daughter’s incredible work with immigrants. She fights for those with little voice and I admire this so much!

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Then there’s me, still unwell but far knowledgeable about everything and incredibly grateful for my time with these women. Some people touch your life and you see things so differently. I will continue supporting those in need and remember Lily’s sadness, Caroline’s fear and Christine’s loneliness and try my best to help anyone feeling these emotions too. I will also remember their big hearts too.

I’d like to share my poem with you. I hope that if anyone is in hospital now, that this will make you smile like it did me.

Patient

Here where night never falls 

but vague dusk under the ceiling’s moon.

Listen, as these slow breaths

fill the space like darkness.

Pain tunes its instruments

precisely, counts its bars of rest.

Observes its cue to enter

piano or fortissimo.

Be patient, says the moon

outside, while the squishing tress

Free under the clouds repeat

be patient, patient, patient…

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