Breast Cancer lesson number fifteen: Everyone needs a hospital survival guide

As I lie here waiting to be helped into my tracksuit bottoms and discharged from the ward, I thought it would be a good time to see whether the ‘I-wish-I’d-known-that-before-I-went-in’ checklist would be extensive. You know what? It’s pretty short and mostly focused on things to think about – not items to buy.

In care terms, hospitals are the easy bit (someone washes you and even remembers when you need to take your pills). In psychological terms, they can be a trial, as patients battle with the comforts of being looked after and the often uphill struggle of getting through the day without pain.

So, here are seven little insights to keep you positive and make sure you don’t overstay your welcome:

Doctors and nurses know best: a hospital stay after major surgery is a strange experience. Within 24 hours of being sliced up, put back together and monitored closely, talks turns to getting you up and out of there. On the surface this may seem a bit mean (the NHS’s attempt to turn beds around quickly at the expense of a bit of after care). But, you know what, if you’re out of hospital, you’re further down the road to recovery, and that’s what anyone caring for you should want the most. I remember being told to get up on Sunday and thinking that it would be impossible to try. You know what? I immediately felt more human. I remember being told to start doing everything myself on Tuesday. I had a little cry thinking no one cared, but once I have washed my own face and managed a solo toilet trip, I felt more in charge of my recovery. It gave me the confidence to leap up the stairs and both the nurses and the physios thought I was amazing. That felt better than any amount of stroking and sympathy, I can tell you. Anything for a little gold star for being a good patient.

If you are uncomfortable, just ask: I have spent the last few days (with the exception of Saturday) trying to stay out of trouble (there were a lot of tears on Saturday). I asked for morphine only when in tears and I made do with everything in an attempt to be easy. Two things would have made life a lot better. More pain medication to relax me and a soft and static bed. I have just had a great night of sleep, because I listened to my body and made a simple request.

Don’t forget yourself in hospital: how easy it is to think that every swelling, shooting pain and a new ache is a life-threatening side effect. How easy is it to think that life is only as big as the four walls of the ward and a bed in the corner. The trouble is, if you fight to get back to who you are from the start, the chances are, your body will respond positively. The guy in the recovery room described me as a perfect patient, not because I didn’t ask for help, wasn’t in pain or didn’t say random things about my hand leaking. It was because I responded to everything, I was patient even when the morphine wasn’t working and I treated each person caring for me as a human being. I even found some time for humour, at which point the nurse said: ‘I can’t believe you’ve actually just general anaesthetic, let alone major surgery’. Where there is humour, there is happiness.

Do what it takes to have a good night sleep: hospitals never sleep, so don’t expect to. The bright lights in hospital make you feel like you are lying in a sports centre. Add in a few loud and random noises (the medication trolley, the blood pressure monitor, a bed brought in from surgery) and it’s hard to imagine ever being able to get to sleep. There are times when you won’t want to sleep at all (I got very anxious when I was on a combination of heavy drugs and thought I would stop breathing if I went to sleep), but when you feel like you can, you have to do everything in your power to try. I have had my first good night sleep in two weeks and I feel a lot more like me. Ear plugs and eye masks are a great idea (the hospital provided me with some, so just ask).

Thin clothes are the answer: it may be February, but the hospital feels like a Hawaiian Island (that could be due to the morphine). If your clothes are cotton and thin, you are more likely to feel comfortable and relaxed. I had a few nightshirts, a couple of bras and three pairs of big knickers and that was enough. The Royce post-surgery bra is amazing (so soft and comforting). I will probably be living in this and my abdo binder for months.

Keep strong in your mind: there are people there to treat your symptoms and take away your pain. There was no one there when I was left to look at myself in the mirror yesterday and see the results of the surgery. I cried and then I remembered why I am doing this. I drew on my inner strength and I got through. No one knows the real you when you are wheeled onto that ward and they can only respond to the person you decide to be in hospital. Be strong and they will be strong too (you might even get extra biscuits).

Order mash with most meals: just try it for me! It’s pretty special.

So, if you are about to be admitted, or find yourself in one of these caring institutions in the future, try and be the best patient you can be. You will be rewarded in so many ways – the ultimate prize being a discharge note and a bag of pills!

Breast cancer lesson number eleven: There may be leeches!

Ok, so what’s the word I was least expecting to hear today at my pre-assessment clinic? Yep, you’ve got it: leeches (followed swiftly by ‘glue’, ‘girdles’ and, that old favourite, the ‘catheter’!

You could be forgiven for thinking that the introduction of leeches into the breast surgery mix is a bit random. I certainly did. The good news is, the chances of meeting them are slim. The bad news is, they tend to come in pairs (or worse threes) if they do make an appearance.

A fascinating tissue reconstruction fact for you. New bionic boobie (sounds better than tummy fat shoved up top) gets checked every 15 minutes or so for around a day after surgery to make sure it’s still alive. If it’s looking a bit sick, in come Mr and Mrs (and possibly auntie) leech to have a play and help things along. This is a party to which only the boob gets invited, but I have been reliably informed that they will be monitored closely in case they fancy going travelling.

Today was fascinating in many ways. Here are some fun facts of the day:

1)    My lovely breast care nurse mentioned that, because the tummy is tight, it is likely I will be fitted with a band or girdle to keep it all in and make sure the ‘glue’ sticks. That and big knickers! Oh, cancer you are spoiling me.

2)    I am now a research guinea pig. I am participating in a clinical trial with the exciting title of: Multifrequency Bioimpedance in the Early Detection of Lymphoedema. This basically means they will measure the volume of liquid in my arm at certain intervals over the next five years to see whether or not they can spot changes that may lead to a rather nasty arm swelling

3)    I currently have 2.5 litres of fluid in my right arm. This means nothing (yet), but I thought it sounded like a lot of liquid for a little arm.

4)    They use a giant old-fashioned called a perometer to measure your arm. You even get to hold a plastic tool that looks like a cake polisher while you are holding it up in the air (oh the glamour). Note to self: when they say sleeveless top they mean a sleeveless top. The other test lasts about a minute and involves three stickers (one on each wrist and one on the right ankle) and a few electric wires. I was intrigued, as was the nurse getting a lesson in taking the test.

5)    Today’s blood test was completely painless. I didn’t even know when the needle had gone in. Amazed, I applauded her on her incredible skill. Her tip: she used to practise by sewing socks. A skilled phlebotomist, a seamstress and a thifty lady (who also had a similar bag to me) = my kind of lady!

Aside from the leeches and the well-sewn socks, I have established that there are many positives to being on the surgeon’s slab for about a day (beyond the induced sleep):

  • I will have a flat tummy by Saturday
  • I get breakfast, lunch and dinner in bed
  • I get a compulsory week of no exercise
  • Having the lymph nodes out on the dominant arm is actually better because you are more inclined to start moving it more quickly. Less fear of ‘robot arm’
  • There is a good month before I can do any heavy lifting (I would put kettles, groceries and hoovers on that list. The physio did suggest this could be a ‘flexible’ deadline if that helped me avoid tasks for a little longer. Lovely physio, nice tip!
  • I can wash my own hair
  • I probably won’t need to use a bedpan (quiet whoop)!
  • Some pilates moves are already part of the post-op exercise plan (albeit lighter than my normal Wednesday early morning reformer class.

Only real shame is the op part. Let’s not dwell on the seromas, nausea, wound infection or, best yet, dead boob!

Tune in for the post-surgery hospital ‘I-wish-I’d-known-that-before-I-went-in’ checklist!