Friday, 27 November 2009

six weeks on

Well it's six weeks since the mastectomy and I have been thinking about the recovery rate of different things. Of course the thing you get caught up in is asking your medical team for timescales - how long have I got, how long will it take to recover, how soon can I get back to crane-driving etc. And of course the frustration that inevitably ensues from either them saying, correctly, that everyone's different, there are statistics galore if you want to depress yourself with them, there is nothing you can do particularly to help with x, y or z (which usually isn't actually true) or alternatively giving you an answer which you then beat yourself up for when you don't measure up to it.

So, recovered after six weeks then? Well now, let's see:

- General anaesthetic - tick. Now I have form on this one and (like the second baby I referred to in a previous entry) had a fair idea of what to look out for. I did gather some additional tips too though. So for anyone going through any kind of surgery involving general anaesthetic, here's the tips I put into good effect:

1 drink as much water or non-acidic, non-milky drinks like berry squashes as possible right up until you have to go nil by mouth (in fact Helen, who is a cardiac nurse and knows a thing or two, tells me you should drink right up to two hours before surgery - the nil-by-mouth bit is more because they can't be sure if they're going to get you in to a slot which becomes available early). You do come round absolutely parched and literally dry-mouthed, and you can't drink a lot without being sick, so this really is the best recovery tool. And recovery from the general anaesthetic (which can hang around in your system and whack you out for weeks and even months afterwards) is the single biggest thing to helping you cope with everything else. Apart from getting enough sleep of course (and so on to pain relief!):

2 pain-relief - take the attitude that only you know what your level of pain is. There is nothing wussy about feeling in five times as much pain as your neighbour in the next bed - if they have a fifth of your pain then bully for them and you get on with yourself. A couple of really important things to be aware of: there are three strands of pain relief you can take up to a maximum, so you may need to ensure you are getting the whole combination up to the levels that are safe. I was on a strong opioid to begin with called fentanyl (or I could have had morphine but have experienced horrid dreams with it before) on a drip that you administer to yourself (this can make you feel very sick), with an NSAID which is non-steroid anti-inflammatory like aspirin or a brufen (mine was diclofenac), and paracetamol. None of these will have any impact on nerve pain so you need to sort out with the surgeon how they will deal with any possible nerve problems in the weeks before surgery unless you want the nightmare I had. (Write down the names of the drugs they tell you you can have and when you last had them. Yes it should be on your sheet but they kept walking off with mine and then being unable to find it - do not assume things will work as they should). Once I was off the fentanyl I had a weaker opioid tablet called tramadol (others are codeine and dihydrocodeine). If you are on high levels of pain relief you stand a higher risk of being sick so ask for an anti-emetic to prevent this. I wasn't offered this until I had been sick, which was stupid because a)why not and b)it meant I was trying to reduce my pain relief to counter the sickness but ended up sinking back into screaming pain (not least because I'd puked up the tablets I'd just taken before they could work). The important point about pain management is that you have to build it up and then work down from the acceptable plateau of discomfort, otherwise you don't get enough sleep and relaxation to let your body do its own recovery work. My rule of thumb became the point at which you would expect to feel discomfort or soreness (not actual pain) that any reasonable person would expect having had a bit of their body chopped off. Boy did I get sick of nurses telling me that I must expect some discomfort after a major operation like that. No kidding! oh sorry, was that a particularly heavy metal object I just managed to throw at you with my good arm despite the pain? If in doubt or being fought about it ask to see the pain management team. They know what they're talking about but you don't necessarily see them that quickly (one of the bad things about Fri surgery is that the weekend cover inevitably follows). The irony of it all is that the quicker you get the plateau under control the quicker you can manage your way off the pain relief. And you really do want to do that because of the other thing they don't tell you enough which is:

3 constipation! you really don't want this. If you've never had any problems in this dept in your life you need to know right now that it is neither funny nor minor. After I broke my arm nine years ago I was close to needing additional surgery to fix this problem and it was more painful than the op had been, so I was determined to be on top of it this time. Painkillers cause constipation. There is a ghastly syrup called lactulose, which is efficacious for some but didn't do much for me, a drug called Senna and the usual advice about fruit particularly high-fibre prunes, figs etc. But the thing that got both me and my neighbours on the move(!) was the delicious bars of organic liquorice (Panda brand, available in some healthfood shops, As Nature Intended in Balham and GMC in Wimbledon). Go in armed!

4 arnica tablets a few days before surgery is supposed to help with the bruising, as is arnica cream to rub on once the dressing is off. I never know how you judge whether it speeds up the recovery but even the effect of massage will help the circulation. Apparently cranberry juice is good for internal bleeding.

5 if you have had surgery in a particular arm do NOT let them take any blood/inject you/ do anything to you on that side (not even take blood pressure). There is too much risk of lymphodoema/pain/other problems. Be warned - if they want to take your blood you will have to be disconnected from the saline drip for 20-30 mins first if it's in the good arm. The fact that they are pushed for time to get it in for analysis is not a sufficient reason for you not to insist they wait - and one of the handouts even tells you to insist. There is no excuse for any risk to be taken with something as horrid as lymphodoema, which can debilitate you for years, but some of the staff are just not aware of it. Be adamant!

So I would say 9/10 for my recovery from the general, 0/10 for my recovery rate from the nerve pain although it seems to have settled down to fairly near normal in its own good time, 9/10 for recovery from pain resulting directly from the surgery and 10/10 for the liqorice. So tick for those. The bruising is nearly totally gone and the swelling in the reconstruction has too I would say. The scars are healing beautifully and I haven't even started on the marigold cream and lavender oil (which reduces redness and speeds up healing) yet. More ticks.

And now for the less good bits. The football under the arm (which is the muscle they moved from my back to create the flap on the front of the reconstructed breast) is now more like a large tennis ball (slightly softer). It will apparently take about a year for the muscle to waste away as it is no longer in use. There is still a lot of numbness on my back and the back of my left arm and I continue to have fluid drained every week although the amount removed is reducing. The area that the muscle was moved from is still sunken and a bit sore inside. I have been masochistically vigilant about my physio exercises which has paid dividends, but today I decided to test it all out at the swimming pool and managed 10 (gentle) lengths. And goodness me has that made a difference! It's done wonders for what has become a very odd set of aches and pains resulting from me holding my back and hip differently with the build-up of fluid and (I guess) the weight of the implant. They tell you that the exercises you manage to do in the early stages yield the best results - I would urge anyone to do theirs religiously even though it's boring and time-consuming becuase they're right. I get Lucy to accompany me on the harp while I'm doing mine. Should really teach her to peel me a grape too.

One of the things about all this is that you don't return to normal. You recover to a different shape, posture and, well, body. So now the swelling of the breast has gone that's good, but I have the strange awareness of a slight soreness where my self really is, which is well behind what appears as my breast, flat on my chest wall. Very odd. Just like what it actually is - an amputation. And still slightly sore, but not anywhere I can touch. I confess I have found this strange awareness rather depressing. The look is fine, but I'm really feeling how changed I am.

Anyway that's way too much writing to have kept anyone's attention so I'm signing off, possibly until Wednesday. Chemo's at 9.30, with the echocardiogram (which they do so they can monitor possible weakening of the heart throughout the chemo) squeezed in before it at 8.30. Nothing like leaving it till the last minute! If I think of any more hints on surgery etc I'll post them another day. Meanwhile have a nice weekend and I'll be back after the chemo.

PS Sue Sunderland bakes the winner of all chocolate cakes - would you like your container back Sue? You've given me many happy pounds to shed, thank you!


  1. Hi Belinda
    So good to hear you sounding so positive about stuff, despite everything you have been through, and the treatment programme coming up. I will be thinking about you on Wednesday, and hope that all goes well. I have been reading your blogs avidly, but I'm not sure my previous messages have worked, so hoping this one does. Despite the difficult circumstances, you still make me laugh out loud!
    Lots of love
    Rachel xxx
    p.s. Simon sends his love and best wishes too

  2. Thanks Rachel, lovely to hear from you! Glad it's tickling you - no doubt there will be more fun and games to report on Wednesday. (Wouldn't it be weird if Wednesday's post just read "all went smoothly"... - dream on!)