Saturday, 28 November 2009

why thank you!

There I was thinking I was going to leave you all alone after that last impossibly long entry, when I get a delightful card and flowers from you lovely people in Year 6 - thank you very much (and for the tokens)! I feel like Christmas has come early (and accordingly shall act like a child in a sweetshop when I take my token to the biggest M&S I can find). Thanks for all your thoughts x

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!

Wednesday, 25 November 2009

chemo and orthotics (that's wigs to you)

Well the first chemo is set for the 2nd December which is next Wednesday. There will be six sessions in all with three weeks between, unless my blood count is too low and they have to postpone it a week. However they are kind and do let you miss the Christmas week if you feel that being wiped out and nauseous when your kids want you to enjoy their presents with them is too great an interference. So the timetable should be:

2nd Dec
30th Dec (and a Happy New Year to you too!)
20th Jan
10th Feb
3rd Mar
29th March.

All of these are Wednesdays and are preceded by blood tests on the Monday before, to make sure my blood count is up to it. It takes about 2-3 hours each session, longer for the first, and my regime for the first half of the course (entertainingly called FEC which I have decided always to pronounce in capitals) is highly likely to give me the classic nausea, sickness, tiredness and hair loss. Oh and bringing on the menopause, but at least that would switch off the hormones which have contributed so much to this in the first place I suppose. Won't be able to have any more babies though.

So the pattern is that the worst of the side-effects generally happen in the first week after the treatment, but the blood count (i.e. my immunity to infections, contagions and other ills) is likely to be lowest in the second week afterwards. I will therefore be avoiding all contact with people noticeably walking around with pomanders under their noses, ringing bells and shouting "bring out your dead".

When all that is over there is a gap of three weeks then I start the radiotherapy (5 days a week for probably 3 or up to 5 weeks) and a 5-year course of Tamoxifen. Must think I'm going to last that long then!

But the really fun bit was getting my scary wig. Tempting though it was to go for something completely outrageous (and there was a candyfloss pink Cleopatra jobby going by the name of Sugar, though it looked nothing like his hairstyle to me), I ended up with something that looks the same colour as my hair if I had highlights and is about the same style. Most impressive for an NHS wig I think. Although it is a bit scary when you just put it on your hand and move it about quickly - I've had Mike running out of the room screaming like a kid a couple of times, and the children think it looks like It out of the Adams Family (I don't think they meant when I was wearing it). My hair should be departing within the first three weeks of the first session apparently, so by Christmas I'll be bald as a coot (yes, from everywhere, which hadn't really occurred to me). I would like a knitted nightcap for my Christmas present. I was intending to set up a little competition with a picture of me bald and inviting people to adorn it with whatever hairdo they thought the most appealing, but as Mike pointed out, most people can't work out how to put messages on this site let alone how to put a wig on a head, so the chances of anyone getting a prize is about nil. However, if someone finds a way, just let me know and I'll set it up!

Going to eat and contemplate next Wednesday - goodnight all.

Monday, 23 November 2009

the swine!

flu jab is the thing that's been entertaining me this last few days. I thought, well given that I'm an NHS priority for once I'll get down there and get both flu jabs before I start the chemo. (Although astonishingly no-one at any point told me to. I just got encouraging nods and "oh yes, that would be a good idea wouldn't it!" from the hospital when I had the foresight to suggest it). Also in the priority category are the children (high infection risk at school) John (high infection risk from the high infection risk children) Mike (looking after me a lot)and our pets and all their offspring (not really and we don't have any anyway).

So I turn up and have my jabs (one flu, one swine flu) and am then told that although everyone else (children, carers, pets but not really etc) will just have one swine flu jab, I will have to have two because I will be immunosuppressed (immunoimpressed?). And that the second jab has to be three weeks later (11th December). So exactly at the point when the first course of chemo will have wiped out my blood count. Not thinking this is ideal, I ask why I didn't get called sooner then, so as to get the two jabs out of the way before the chemo starts, and should I therefore delay the chemo so as not to be needlessly carried off by swine flu when the NHS has put so much effort into saving my life from cancer?

Turns out the GP's surgery hadn't contacted me to suggest this because technically I'm actually not a priority after all. That's because I've only had (or only may still have)cancer which does not, of itself, put me in a more vulnerable category. Undergoing chemotherapy does. (Undergoing radiotherapy doesn't because it doesn't knacker your immune system). Not a lot of people know that. So you don't get called until you are actually in the at-risk category of having chemo by which time you're immuno-suppressed and having to deal with a)the risk of your resistance to it being nil (although, granted, it's not a live vaccine)and b)any side-effects this might provoke at the same time as all the side-effects from the chemo. Fab!

So I've suggested wouldn't it be a good idea to take two simple steps -
1 the hospital advise people to get their flu jab as far in advance of the chemo starting as soon as possible after they've recovered from surgery and
2 the hospital write as soon as possible to the GPs to warn them that chemo will be commencing in roughly so many weeks which will put their patient in a priority category so can they get their flu jabs out of the way now please.
Just an idea. I can't think there would be many people who would queue-jump to avoid dying of swine flu at any cost and then decline chemo, though I could be wrong...

Anyway the happy news for me is that the nurse did in fact give me the full dose so my oncologist will probably think that is sufficient, as I wasn't immunosuppressed when I had it. I'll know on Wednesday when I see her. And am going to orthotic services as well (that's wigs to you).

On a more cheery note I had the kids for the first time since my surgery, for the WHOLE weekend! and jolly good fun it was too. They even thought so!

ta-ra a bit.

Wednesday, 18 November 2009

things you wouldn't want to do on your day off.

Had the oncology meeting this morning and the order of play appears to be that

1 I go in again next Wednesday so they can repeat everything I didn't take in and ask any questions I hadn't thought of and have a wig fitted (in what's called the orthotic services department);

2 I have a regular blood test and checkup appt on Monday 30th Nov then have the first chemo on 2nd December (AAAArghh!!!!!);

3 I then have the checkup and chemo repeated every three weeks, with a total of six treatments.

Brighter sparks among you will realise that that makes my second course due on the 23rd December, but they are prepared to slip it by a week if the prospect of nausea, possible sickness and all the other fun side-effects might ruin Christmas for me and those around me. And the real girly swots who know when my birthday is will be able to work out that it won't all finish until after that, at about the end of April/beginning of May.

This all assumes that there isn't slippage which can occur if my blood count drops or I get any horrible infections. Unfortunately the blood count leaves me very open to infection which can be life-threatening. So if I avoid you because you or even your nearest and dearest have a cold, please don't take offence, but I do find it sufficiently scary to be really prissy about it and would greatly appreciate it if you would go on the overly-cautious side with me if you were planning to visit and just don't!

I need to read up about all the other side effects of this wonderful cocktail I shall be taking and will let you know more once the full impact has sunk in (now you'll see the real wuss!!)

Tuesday, 17 November 2009


I have just had confirmation that there is no spread to the liver and that all the little cysts that appeared there are benign chappies that don't mean me any harm. I am a happy bunny.

Just think, technically that means that I could actually even now, as we speak, be a cancer-free zone! Think I'll do the chemo and radio though. You know, just to make sure. Innit.


Thursday, 12 November 2009

news from a broad

Hello all. Apparently people are still looking at this (which is nice to know, do keep your feedback coming!)so here's an update.

I had another MRI scan (the one that makes loud clangy noises and is a claustrophobic's nightmare) to check for spread to the liver. I confess I did think they'd done that but apparently it was only the neck they checked last time for spread to the bone. They had recommended follow-up of the liver from the CT scan to monitor it generally as there were some ambiguous things that showed up, but I think they have got a little alarmed by the fact that all the lymph nodes under my arm were affected so they have now gone for this MRI ahead of the oncology appointment. Not the best news.

Quite funny though. I turned up with Jackie (who having been through the mill on all this with Harry knows this stuff backwards, as well as how to be the ultimate advocate and is a star!) to be met with a tut-tut, slightly despairing shake of the head and the news that they can't do MRIs sooner than 6 weeks after surgery (with the clear implication that the surgeon should jolly well know that). I explained that my original appt for 30th November had been cancelled and brought forward by my cancer team because they want to start my chemo at the end of November, and that presumably they will have explained that (ha!) when they asked for it to be scheduled sooner. YYeeessss...

So the radiologist came out and explained to me that because the MRI stands for magnetic resonance imaging, it really does what it says on the tin, and so they don't like to do it before the titanium clips have healed over properly in case the magnets wrench them out. Jackie: what titanium clips? Radiologist: the ones they use to seal off the blood flow during surgery. Jackie: and they're still in there? Radiologist: yes. (me in thought bubble: obviously! how could I not know that?).

However he then helpfully reassures us that this is only a theoretical risk (as opposed to a real one where things actually do happen?)and he's happy to go ahead. So with images of bits of metal flying out of me at speed and sticking to the machine, I ask him if he could perhaps phone my surgeon to find out if the chemo should be postponed to allow for this. Just so as to avoid the (only theoretical) possibility of mass internal haemorrhaging because I have haemorrhaphobia. Wussy I know. And to be fair he very obligingly does just that and comes back to say that the surgeon is happy for me to go ahead. That's all right then! so I do, and I'm delighted to say that no clips that I did not know were left inside me have come undone that I can tell and I haven't had massive internal bleeding. Which is nice!

You'd think the different disciplines would communicate this sort of routine thing and that they'd know all this, wouldn't you? Perhaps they do and it's all to do with targets. Who knows?

So in theory the next step is that the results are done in time to be reported to the multi-disciplinary team meeting where they discuss me next Wednesday morning and I then go to hear the results and my treatment plan later on that morning (10.45). Gives me something to look forward to. Thanks Jackie for being with me - you really do need that second pair of ears with you for these things. Not so much to hear and understand things that you, as the distracted patient, miss as to witness the occasional you-couldn't-make-it-up factor.

Out with Karen and Helen for lunch tomorrow (now that does give me something to look forward to!)


Saturday, 7 November 2009

doing lunch

just to report that lunching with Janet at Limon yesterday (which was lovely, thank you Janet!) meant walking all the way to the foot of Wimbledon hill (bumping into Anna on the way) and all the way back and not feeling wiped out afterwards (or indeed tired at all), so I am taking great heart from that. I'm still a bit twitchy about crowds but getting less sensitive if anyone does knock into me anyway, so gradually feeling like I'm getting back to normal. Shame that's not the end of the story really cos of course every day brings the chemo nearer and I don't know what side-effects that will hold. But the feeling of tiny little improvements making such a happy difference continues, with its strange familiar echo from those early days of just having had a baby..!

And disappointing to hear, from Anne who visited yesterday, that my description of the nursing care on the recovery ward rang many bells with her about her recent experience there, but inspiring to the extent that I hope we will be collaborating on a letter to the Patients' Association and more importantly the Patients' Advisory Liaison Service. If anyone has similar experiences to share that they would like to add in to our letter please let me know, as this treatment is the last thing anyone should have to go through when they are vulnerable after major surgery like that. And there are many older and more infirm than us two going through similar things every day.

Have a nice weekend all.

Thursday, 5 November 2009

trouble with posting

Hi all,

After hearing umpteen people say they are reading this blog but not able to post comments on to it I thought i would run through it from outside and see how to do it. There are a couple of hiccupy bits but if you follow these instructions it should work:

• Click on the comments link under the blog entry (the one that says number comments after Posted by Belinda’s updates at time)
• Type your comment into the box entitled Post your comment. Don’t forget to put your name as otherwise it will come up as anonymous.
• When you're ready to post, select Google Account from the dropdown list next to Comment as:
• Press Post Comment
• For some reason it seems then to come up with Your request could not be processed. Please try again. So press Post Comment again.
• When the login screen comes up, type in the email box and belinda1 in the password. Do not tick stay signed in. Press the Sign in tab
• Fill in the word verification as requested and press the Post Comment tab.
• Remember to click on Sign out when the next blank Post comment screen comes up again.

Sometimes it comes up with a preview screen and asks you to enter another verification word again - just go with it! hopefully you should now succeed - please do give it a go and let me know if it doesn't work. otherwise I'm not sure if anyone's out there reading it and it can feel very lonely! :-( (except of course people are e-mailing me and telling me so!)

Tuesday, 3 November 2009

feeling less like an 80 year-old..

And I'm sure it's thanks in no small part to all my lovely visitors! Lovely to see you Jackie and Emma (and thanks for the fab advice about the physio, will definitely follow up) and looking forward to Gill popping round shortly and Janet taking me for a walk and a bite to eat Friday lunchtime. See there are positive things about adversity if you have good people around you to cheer you on!

Well I've ditched the painkillers except for overnight, the bruising's slowly starting to fade and (dare I believe?) there may just be a bit of a reduction of the swelling... I definitely feel the after-effects of the general anaesthetic have gone. Had Gabriel with me yesterday and we walked up to M&S, with him on my left-hand side and slightly behind me acting as a very effective bodyguard! I felt totally up to it when we set out and totally wiped by the time we got back (and he carried the shopping), so obviously I need to guage these things. Was out and about trick-or-treating with the kids on Sat and that was the same. To state the bleeding obvious, there is a massive difference between pottering around your own manor and walking in a straight line of more than ten steps round your neighbourhood! But I do need to get out and about so if anyone's thinking of visiting but would be prepared to take me for a short walk instead I would be delighted to do so (though avoiding crowds is advisable at the mo!). I can be let off the lead.

I am saying to (female) friends and family that if you want to see the surgeon's magnificent work I am happy for people to see. Just ask, or if you would prefer to wait until it looks less bruised and swollen ask later. If I have any reason not to I will ask for a raincheck, but the reason I am offering is because I am keen for anyone who is newly diagnosed to know that, of all the many things there are to worry about with this (and I have to say it is the cancer itself for me rather than caring greatly about the appearance of my boob), at least there is the comfort of knowing what a great job they can do these days. What used to be disfigurement from this is really a million miles advanced.

Going to the hospital on Thursday to empty the hot water bottle on my back again so onwards and upwards!