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Tuesday 9 April 2019

At home recovering

Reading over my last post, I sounded a little down, which I think is understandable given that I was in so much pain, feeling incredibly sleep-deprived, and completely immobile. Now that I am home and slowly regaining my strength, my spirits are also rising. It's so great to be back in my own bed, although I'm having broken sleep, and I'm still not able to really do much more than occasionally move from the couch to the bathroom and back. I'm slowly regaining my appetite, and the doctor has recommended I eat a protein-rich diet to help my wound heal, so I'm trying to make sure I eat lots of protein. I have a craft project on the go, as I'm still not really ready to focus on reading a book just yet, and I'm listening to the fifth Tales of the City book on audible. Tanai is working from home this week and basically doing everything around the house, as I'm not allowed to lift anything and can't even bend over to pick something up off the floor. He's being a total legend.

Eating lunch at home

I want to take a moment to acknowledge how incredible our NHS is. For those of you not UK-based, this is the National Health Service, a 70-year-old institution funded by our taxes, which provides universal healthcare free at the point of delivery for all people residing in the UK. I received all my treatment for breast cancer through the NHS and now I'm having my ovarian cancer treatment with them too. I haven't paid a penny and won't need to pay anything, which I know differs markedly from the healthcare provisions in other countries. Having cancer is stressful enough without having to worry about getting into massive debt to pay for healthcare! Yes, their systems and processes need updating (it's very paper-based) and they are being run into the ground due to chronic underfunding by the Tory government and a major shortage of nurses due to Brexit, but it's still (just about) creaking on, and I am so incredibly grateful. They are saving my life for a second time.

I stayed in hospital for 6 days after my surgery. Each day the NHS worked like clockwork around me and the other patients on my ward. I had my temperature and blood pressure checked hourly in the first few days, and every 3 hours once I had stabilised. The doctors did their rounds in the morning, assessed me, and revised their judgements about when I should go home. My bed linen was changed every morning and I had a little wash and donned a fresh gown. All my meals were provided, as well as regular coffees, teas, hot chocolates. The food is a bit like school dinners, and consisted mainly of overcooked, bland vegetables with questionable meat, but it was nutritious, and also free. The nurses work in 12-hour shifts, a day team and a night team, so there is round the clock care. I had a buzzer on my bed which I could press at any time, and a nurse would come and attend me, so when I was feeling incredible pain at 3am, someone came and brought me liquid morphine to ease the pain. My wound dressings were removed by two student nurses under the supervision of the ward nurse, which they did very well, and they thanked me for allowing them to get experience doing this as it all counts towards their nursing qualifications. And when I was discharged, I was given a massive bag of meds: 3 different types of pain relief to last me 7 days, the rest of the course of antibiotics they have put me on, some tablets to prevent stomach ulcers due to the pain relief, anti-sickness tablets, and 28 little injections that I have to inject myself in my belly for a month to prevent blood clots (due to being immobile). Once again, no payment exchanged hands for these. 

They do so many thankless tasks, changing my bag of pee when I had a catheter, turning and lifting people who are immobile, dealing with people who are cranky and distressed, and in one instance, racist (the lady next to me was on the phone complaining to her husband about how 'all the nurses were blacks'!), and they are paid in some instances less than the London Living Wage. It makes me so angry that we live in a culture which values care work and other vital professions, such as teaching, on such a low level, and yet values other types of work (eg banking, politics) so highly. Our society relies on people in the caring professions to have some kind of 'vocation', and to do the job because they love it, not for the money. This is fine, I've never been particularly motivated by money, but you need to pay people a decent living wage. One of my chemo nurses quipped that she would be better off getting a job in retail as it pays more and is less stressful than nursing! And this is being borne out by the numbers of people leaving the profession, and the reduction in people applying to train. Last year there was a shortage of 70,000 nurses applying for job in the NHS. Brexit has a lot to do with this, as Europeans are uncertain of their rights to work here, but also other non-Brits are feeling less and less welcome in the UK. I would say, over the two years of being treated for cancer, around 10% of the people caring for me have been British. The NHS would fall apart without migrant workers, and that is exactly what it is doing. I am witnessing it crumbling from the inside. The nurses and doctors are all so overworked, you can feel the strain on them of being short staffed. They are all having to cover each other's duties and it's taking its toll. It's incredibly tragic to see, but with the continuing conservative governments and their ongoing privatisation of NHS services, I don't see how this trend can be reversed. I feel lucky to be getting my treatment in the twilight years of the NHS, and hope that I can once again be cancer-free before it totally falls apart.

I'm going to post a photo of my scar at the bottom of this post, so don't scroll down if you're squeamish, as it's quite a Frankenstein-esque scar! I have 42 industrial-sized staples in there, which I need to get removed at my GP on Friday. Then next Wednesday I go back to clinic to see my surgeon and find out the pathology of all the elements they have removed, and get the next steps. Until then, it's a glacial recovery, slowly getting stronger and more mobile each day.












































 What a scar!

Thursday 4 April 2019

Recovering from surgery


I drafted a post last week about how I was recovering from my oophorectomy, but didn’t get chance to publish it before I headed back in for my second surgery. The two experiences are markedly different. I guess all of that is irrelevant now, as this more major surgery has taken over. I thought I'd give a summary so you know how I'm getting on. I won't sugar-coat it, it's tough. This is the most major operation I've ever had in my life, and I've got to admit I'm struggling. But each day I'm getting a little stronger, so I just need to be patient and take it day by day.

In Recovery

Jugular cannula!

The surgery went well, the surgeon had a look around and didn't seem to find anything untoward, and I only lost 220ml of blood, so didn't need to have a transfusion, or go onto the High Dependency Unit, which is good! I was in the recovery bay until 2.30am on Wednesday morning though, as my blood pressure was really low, and they wanted it to come up before I went on the ward. I've been on the ward since then. So they removed my uterus, cervix, all my abdominal and chest lymph nodes and my omentum, which is part of the peritineum, and to do this they had to open me up from just below my breasts to my lower abdomen. I'm going to have an epic scar! It took them almost 6 hours. I also woke up with way more tubes than I was expecting.

- They put a cannula in the jugular vein in my neck, and then stitched it to me! This was an emergency line in during the op which I don't think they used in the end. When they removed the tube from it, it was about 6 inches long. Eurgh.
- They also put a cannula in an artery in my left hand.
- They also put a cannula in a regular vein in my left hand, which is still being used to give me pain relief
- They also put a cannula in a regular vein in my neck, which is still being used for pain relief and anti-nausea. They used my neck because I can't have sharps in my right arm due to having lymph nodes removed a couple of years ago during my breast cancer op
- They also gave me an epidural in my back, for pain relief during the surgery and for the first couple of days afterwards. I assumed I would never have an epidural because I thought they were just for childbirth! It was pretty cool, and when they removed it yesterday the nurse showed me the blue hooked tip which is used to deliver the anaesthetic
- They also had a feeding tube hooked into me via my nose all the way into my stomach
- They also had an oxygen tube hooked into my nose and round my ears, delivering me pure oxygen
- I also had a catheter as I couldn't walk so needed to be able to pee


Now, two days later, I just have the two regular cannulas and my oxygen tube, so there are slightly fewer wires to worry about!

I'm in a room for 4 people, and unfortunately the woman in the bed opposite me is the world's loudest snorer! She's been at it like a generator and seems to have an incredible capacity to fall asleep at all hours. I have earplugs and I can still hear her grating snore through them, it's so loud! Also, they have to do observations on me hourly, checking my blood pressure and temperature, so I'm not getting much rest. My pain relief has been switched to a PCA, which is controlled by me, so I press it every time I require pain relief. This is all very well, but it's forcing me to choose between sleep and pain relief! I'm still not allowed to have solid food, but I've graduated to soups and yoghurts, which means I can now also have ibuprofen in my mix of pain meds.

On the first day they insisted that I stood up and got out of the bed and into a chair. I felt very dizzy and only did it for a few minutes, but it felt like a great achievement. Last night I had a burst of energy and did it again, and managed to stand for about a minute. Today I've been able to walk to the bathroom twice, although very gingerly.

I'm significantly more incapacitated this time round, although I was lucky enough to have some friends bring me yummy food after the last op, so hopefully that will continue to happen after this one! Once again everything they removed will be sent off to the lab, and we will get the pathology reports in about a fortnight, and then we will crack on with the rest of treatment. I'm keen for it all to start, as the sooner it starts the sooner it will finish. I've also donated my tissue to a tissue bank -- so once the lab is done with it, instead of being incinerated, it will be sent to the tissue bank, for both local and international studies. Another opportunity to help medical science and improve cancer care for patients in the future!

I suppose that was a slightly pedestrian, descriptive post, but I felt the need to document it. I'm confident I shall get stronger every day and continue to fight back.