Wednesday, 30 December 2009
Hello to any blog followers still able to stand up after the excesses of the last few days!! There are currently four, sorry three, mince pies left in the tin in the kitchen, should anyone have the space....
Seriously though, (this is a joint effort - Mike typing, Belinda reclining and searching for inspiration in a Vita Sackville-West way, sorry turban. Belinda has just said she has Jennifer to thank for t'hat) today was FEC 2, our own variation on the movies and sequels we've been watching over Christmas.
Rather than a big green ogre (geddit?) there were two syringes of pinkish/red gunge that are reminiscent of cough mixture (Vita says flat cherryade) and some other lovely liquids and are supposed to be doing some good. They made Belinda's arm hurt a lot while the injections were going in :o( but she recovered from that :o)
The day did not begin well (nothing new here) when we arrived to find that the results of the blood test taken on the 21st December showed the blood count to be slightly too low for chemo. Unfortunately nobody thought to mention it until a message was left at 4:30 last night on B's home number (we were at my flat in Clapham) - too late to do anything! Sooo, blood was taken anew at 11:00, we went to do some shopping, went home and had some lunch, then went back at 3:30 for cocktails, todays blood test being fine. Still, at least it fills the day with activities instead of sprawling in front of the TV (which is giving off a wonderful green glow - anyone know a TV repair-person who could give a free opinion on fixability?)
So Belnda is now calmly waiting to see if the background nausea moves centre stage or if she has got in quicker with the pills than last time. She promises a full account of the transition to baldness and the unexpected reactions it engendered in her, just as soon as she stops being as green as the TV screen.
If we don't blog before, have a Happy New Year!! We'll be toasting the bells with ginger ale!!
Thursday, 24 December 2009
Am moulting like a spaniel so am just about to get in the shower and take the plunge with the barnet. It'll be wigs on for Xmas as I can no longer bear to keep spitting out hairs and have started finding them in the food. So that's the end of that!
Good cheer x
Saturday, 19 December 2009
But back to the theme. There is some loosening of the old follicles but not yet by the handful. Without wishing to sound ungrateful I am worrying slightly that this is an indication the chemo is not slamming the little white ones hard enough. I know they are likely to reassure me at my oncology appt on Monday that some people don't lose their hair but, not to put too fine a point on it, I want to know if those are the chemo patients who keel over within two years. Does the fact that I have rarely in my life felt fitter than at the moment mean they should be doubling the dose?
The thing is I'm feeling a little disappointed at the lack of information I have been given about outcomes and what I can do to influence them. You would think it stands to reason that if certain things greatly increase the risk of certain cancers, then avoiding them would be even more necessary to avoid recurrence of cancer after treatment than to avoid getting it in the first place. But nobody has told me this in relation to anything.
So for example there is an established link between smoking and lung cancer. We all know about the 107 year-old grandparent who smoked 107 a day since he was born and died in his sleep without a cancerous cell in his body, but we tend nonetheless to accept now that not smoking is a good idea if you want to avoid it. This suggests to me that if you contract lung cancer as a smoker (and have therefore entered the realm of 100% having lung cancer), logically most people would expect that giving up smoking to avoid recurrence is a sensible step. Or conversely that continuing to smoke would be madness. So what about all the other things that have been shown or are strongly suspected to cause cancer and which we are beginning to be told the avoidance of could prevent many cancers if we didn't ingest/inhale/cover ourselves or our work surfaces with them? Nobody has told me whether my decisions to knock alcohol on the head for now (and certainly at the rate I was drinking before to reduce that dramatically forever), to eat less dairy or red meat are jolly sensible because they will help to prevent recurrence or pointless because the die is cast and in fact I am ****ing in the wind.
I am not raising this as a complaint because I want to know whether I needn't miss out on several bottles of Chateau varieux because nothing I now do can alter the risk of the cancer returning (although clearly I'd be mightily miffed if it turned out to be a wasted effort), but because I feel that the one thing you want control of is what you can do to prevent said recurrence. Obvious isn't it? Yet all I've heard thus far from the vast majority of those treating me has been a scathing dismissal of the Bristol Cancer Care centre and similar institutions for their approach to diet and its impact together with anything else that comes under the heading of complementary therapies (with the possible exception of physiotherapy). This despite a fairly clear endorsement in a lot of the pamphlets you get given. I rather mind this, as places like the BCC centre (now Penny Brohn centre), the Breast Cancer Haven in Fulham and the Maggie's Centres around the place appear to me to be looking at areas that should be mainstream advice on the NHS and which has been sadly neglected by it, the hole being filled by these totally admirable charities usually started by someone who suffered from that lack themselves. To have this all dismissed as quackery is in my view a quite appalling neglect of duty - all that anyone in my situation is interested in is how to avoid recurrence. If I have a cancer that is hugely hormone-caused and someone (thank you Mary!) tells me that chocolate can mimic oestrogen, I don't want to be met with the answer " a little of what you fancy does you good" if for me it is actually downright dangerous. The sacrifice of a little seratonin would be outweighed by the sheer delight at knowing I'm not hastening my possible demise - if I am in control of such decisions because I have been given the information.
If anyone has information they can point me to in this (although obviously I shall be pursuing my own research and trying to get answers from the hospital) please do send it to me.
By the way since I started writing this this morning I have tried on a number of precautionary hats and bought one. I think from the one that a little hair got caught in which came away without a hint of pain or resistance I can safely say the farewell process has begun, after all. Watch this (widening) space!
Monday, 14 December 2009
There are only a couple of exceptions to this, one of which is the wave of tiredness which can suddenly hit but only seems to do when I've really gone for it and used up all stamina reserves. So last Wednesday for example, I was going to post an entry which went "Felt so well I decided to go to Kingston to experience a bit of Christmas atmosphere, which was fun but has pushed me slightly over the edge zzzzzz zzzzz" - but I was too tired!
The other is sensitivity of gums and mouth generally. Mouth ulcers is something they warn you about and I have felt I am right on the edge of them since the chemo. On Friday night I went with Mike for a lovely Christmas meal with one of his work firms and decided to have my one Christmas drink (couldn't resist the glass of fizz which I thoroughly enjoyed) which I think has bitten back by finally delivering two little ulcers. But they're not severe yet so fingers crossed they won't become so. Oh and a few spots which come and go.
Slightly disappointingly though, my arm seems to have stiffened up along the nerve which has become a bit taut and painful again, despite the fact I have only missed one session of exercises since the operation. :-( Hopefully this is not the onset of lymphodoema, which can set in even months after surgery, apparently.
Apart from that I am feeling almost fully energetic. And hairy! so, in Christmas TV classics vernacular, you won't yet be able to see the join! Onwards and upwards.
Monday, 7 December 2009
I think it's all down to the pills. You have to get on top of it. Having eaten quite happily during the chemo and come back on the bus all smug because I felt ok, I then started to feel nauseous before having taken the next anti-sickness pills - mistake! So for anyone else in that position, it's the same as the pain management - take it before it gets to you is the clue. I then had to suffer the return of many a tasty morsel in a most unpleasant way until bedtime. I slept really quite well overnight and woke up feeling empty-stomached and very happy that way thank you. I took the anti-sickness pills and promptly brought them back, rang the chemo nurse and asked her how I should deal with it if I had to start taking the steroids on a full stomach that day too (which as well as helping with the sickness are there to prevent allergic reactions so do need to be taken). As far as I was concerned, not eating or taking pills of any sort for about the next fortnight seemed a very attractive option, but she warned me against this. The problem, she explained, is that I was treating it like a bug that passes and you think ah, I'll leave my poor stomach alone for 24 hours now and I'll be right as rain tomorrow, but it doesn't happen like that because it's chemo, not a bug, and comes and goes in waves for days. It was a huge counter-intuitive leap of faith to believe her that it was not the anti-sickness pills that were making me sick but the cocktail of poisons that had been injected into me. However that is what you have to do and of course she knows her job and she was right. So the moral of the story, as ever, is suspend what your experience tells you because you ain't never been here before.
Otherwise I have been exceptionally lucky this round so far. My sister Liz came to look after me, coming through the door on Thursday as Mike went out the door having had all the bad bits, and I spent the weekend thoroughly enjoying her company, and the kids who were with me from Friday night, and feeling a total fraud. We even went and enjoyed Pelham school fair. It's weird though because actually, although I'm feeling fine, it wouldn't be true to say I'm feeling normal. You can still feel the faint background nausea and heartburn, a funny buzzingness in the background that is undoubtedly the chemicals floating round your bloodstream wrecking your internal systems along with the good they're doing, and a vague internal crash-helmet bizarrely lining the inside of your skull. It's sort of like a painless invisible pressure that's almost imperceptible. Very hard to describe.
And hallo steroids!! wow! so the anti-sickness pills start to wear off and you take more and feel a bit better, but the steroids do everything you've always suspected they would and you end up redecorating the back bedroom three times in an afternoon before cooking for 12 and servicing the car yourself. Energy or what! Time-limited of course and just another illusion of wellness but boy did they help! Ration ended yesterday :-( but another lesson in why to take your pills as directed - they really helped enormously. (Talking of enormously, the other thing they do of course is to allow you to eat some of the lovely chilli served at the school Xmas fair and think, yes I could tidy up another six portions of that. Not because you're hungry, or want more even though you're not hungry, but because you feel that you can, there is a seven-portion area in your stomach and with a little patient work you could fill it all up. So if you don't see me for a few months be kind when you next do and no I'm not pregnant).
Other than that, sleeping and being very well. The anti-sickness pills run out today so let's hope that's not speaking too soon. I'm not sure whether the hair has started to loosen a bit or whether I've always lost a few like that here and there but I am a little suspicious...thanks to everyone who has said what an improvement my shorter hair is! short-lived perhaps but it gives me ideas for the regrowth.
Right, better start catching up with Christmas - it won't do itself!
Wednesday, 2 December 2009
Owing to a somewhat anticipated reaction to the first chemo session, Belinda has handed over responsibility to me for tonight's briefing,
First things first, owing to that reaction B may be asleep a lot over the next couple of days and not want to be woken so if you want to check how she is with Liz (her sister who'll be here while I'm in Munich) or me, feel free to phone the home number. Feel free to send texts or leave messages on this site too.
As for today... well, we turned up at 8:20 for an 8:30 scheduled heart echo only to find the Cardiac Investigation room empty. Staff began to arrive without acknowledging us. When B asked what was happening we were told the desk would be staffed from 9am. When she said she'd been told to be there at 8:30 and had arranged childcare there was a flurry of activity and then.... nothing. I went off in search of action while B asked a gowned member of staff what was going on. The reply was rude and improper (words to the effect of "It's not my problem. Don't talk to me like that") but a scan was forthcoming and we got to the Chemo Day Unit in time.
The attitude there couldn't have been more different. Everything was clearly explained by kind and gentle staff. The treatment began just before 11 and was over by about 12. And then we caught the bus home!! And all was well until about 3pm when the effects of the anti-emetic tablets given before the chemo wore off and the feeling of sickness began.
As I write B is lying on the sofa struggling with reactions I can't begin to understand. She's been sick twice and hasn't been able to eat anything yet tonight. Might be down to the snack we had during the chemo....
On a different note, she has asked me to tell you about "What Can I Do to Help?" by Deborah Hutton. Its a fantastic book about dealing with cancer - both for the patient and those who watch and try to help. A big thank you to my friend, Henry Stewart of Happy Computers for the gift...
Tuesday, 1 December 2009
Saturday, 28 November 2009
Friday, 27 November 2009
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
30th Dec (and a Happy New Year to you too!)
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
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
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
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
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
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
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 email@example.com 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
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!
Saturday, 31 October 2009
Have had the kids quite a bit during the day this week, which will change to after school next week, but they will continue to stay overnights with John for the while. Am improving though and reducing the painkillers gradually. There's a lot of improvement to be made with the physio exercises to battle against what they call "cording" under the arm. This is a pulling on the nerve that results from the movement of the muscle from the back and I have to pull on it for weeks with a variety of exercises 3 times a day to try and get it back to normal. Very tiring and time-consuming.
For those who haven't already heard this from me, the wonder of reconstructive technique these days is quite awesome, and the surgeon was very proud of his handiwork. What they do is:
- remove the nipple (which is breast tissue so has to go anyway)
- remove all the breast tissue through that opening - they make no other incisions to the skin of the breast at all so there are no other scars
- put in an implant
- make an incision in the back and remove an area of the muscle (known as the dorsal flap), but they don't take it out, rather they move it round underneath the skin and sit it over the implant (this is what can cause the cording). So what you end up with is the breast (rather swollen at first) with all the original skin saved and sensitive, with just the nipple removed. To cap it all (can't resist these puns, they just suggest themselves!) you can later have either a tattoo (I'm toying with the idea of a safety pin and chain) or you can even have a reconstructed nipple. Somehow I don't feel very drawn to any more surgery than is strictly required at the moment, but you never know, maybe in a year's time...
In any event, amazing thought it looks now, it will inevitably suffer damage because radiotherapy hardens the implant. It's a catch-22 because unless you have the reconstruction at the same time as the mastectomy you can't take advantage of the skin-saving technique, but they don't know for sure that you'll need radiotherapy until they've analysed the cancerous tissue. But they can go back in after the radiotherapy and patch it up, these clever bods.
I gather that not everywhere in the country has this wonderful option. I don't know whether people in areas where this is not on offer can ask to be treated elsewhere or how it all works within NHS budgets, but if you know anyone who has been diagnosed and would be interested please feel free to invite them to this blog.
Thursday, 29 October 2009
Wednesday, 28 October 2009
The good news for me is that they are confident the diseased tissue was well within what they removed, so there is no obvious risk of it touching onto the next area it could travel to. The tumour itself was 500mm which is quite large - considering the fact that I couldn't at any stage right up to surgery detect an obvious lump. I wouldn't put anyone off checking for lumps but I would encourage anyone too young to be in the screening programme (starts age 50-53) to be persistent if they have breast pain or any strange changes to the nipple and get referred for a mammogram! There was also a surrounding area of pre-cancerous tissue which took the lump to 700mm.
The less good news is that of 17 lymph nodes on the gland they removed from my left arm, all 17 contained cancerous cells. So that means that the chemo will definitely be followed by radiotherapy. The chemo will start in about 6 weeks if I have recovered enough and am fit and up to it. This will be once every 3 weeks for about 5/6 months and will be at St George's. I have an appt in two weeks time to confirm the type of chemo and other details. Then there will be a gap of a couple of weeks before radiotherapy, which will be 5 days a week for 5 weeks at the Marsden in Fulham. There is also a further MRI scan I need to have to check out some uncertainty about spread to the liver from a previous scan, so I'm hoping there's nothing ominous lurking there.
Other than that I had 200mls of serum drained off my back so I no longer feel as though someone has inserted a hot water bottle under my skin and am not wobbling like a waterbed! Not the best form of weight loss...
And my sister is here now so I'm going to sign off. Still recovering well from the general.
If anyone wants to pop round during the afternoon tomorrow or the day on Friday feel free to text me and hopefully I should be well up to it.
And finally a huge thank you to Tony, Anne-Marie's husband, for coming and fixing my boiler for me so promptly and working on it so late in the evening!
Tuesday, 27 October 2009
Little but often darling! Keep'em wanting more...
Thought I'd let you all have my view of the world again.
Belinda is coping incredibly well and getting stronger every day, though tomorrow will see a trip back to St Gs for the results of tests carried out on what was removed.
She's dealing well with the pain, as well as the loss of heating at home (a well timed Indian Summer has helped!) and the loss of the big silver birch in her garden :o( which was a victim of ill-timed redevelopment work next door.
Keep the comments coming, I know she loves reading them - and I'm not around this week to cheer her up!!
Saturday, 24 October 2009
so lots going on and I'm gratefully running out of vases! (Seriously, not sure where any more will go - thanks for the beautiful roses Liz!). Absolutely knackered and about to have a shower and eat so no more hospital tales for now. My heating has packed up (great timing!) does anyone know a good boiler mender in the area that they can recommend?
Friday, 23 October 2009
It wasn't just the fact that I can now watch my own telly and drink decent cups of tea that was such a delight, it was also the fact that my wonderful neighbours Karen and Nigel (and possibly Sandy too?) had shampooed my carpet while I was in hospital (how lovely a thing to do was that?!). If you're following this at all K and N thank you soo much, it's about the nicest gesture anyone could have made.
So here's the boring bit before the football under my left arm tells me it's time to stop. (I have been told this is a very 1950's image by both Mike and Mel but I really do feel like one of those football refs, pointing with the right arm, whistle in the mouth and football under the left). Am spending about half the time asleep at the mo so if you feel like visiting I would LOVE to see you but please could you send me a text first so that I can let you know if I'm up to it? I suspect it's as much recovery from the general anaesthetic as bad decisions on the pitch, but I am getting enormously and suddenly tired and unfortunately am not able to sleep comfortably enough just yet to benefit much from the sleep I am managing.
I have to say that the operation experience has been a very mixed bag for me (sorry if there is anyone out there who is looking for reassurance but it's how it is). St George's is obviously doing some incredible things with its plastic surgery and the two main (breast) surgeons' names go before them even as far as Peter Jones bra-fitting department, but there is a depressing communication and training shortfall on the care side. I think if anyone can learn anything from my experience it would be the same as we are told (and certainly are hugely aware of second time around) when having babies, which is that you really have to be assertive about what you know about yourself and your own needs. The trouble I had on the recovery ward was in large part due to the fact that I was not doing things "inside the box" because I had this particular handicap of previous damage to my ulnar nerve. Despite the fact that I had mentioned this in advance more than once, the attitude seemed to be "oh well, it shouldn't present a problem" and when after the event it did, the nursing staff on the recovery ward seemed to find it annoying that I was in absolute agony rather than it increasing their level of care and (frankly) nursing skills. One nurse sat there with her face in her hands looking rather boredly at my notes while I was screaming in pain. They are reluctant to give you too much to drink when you first come round so I had these "swabs" to suck on (little pink sponges on lollipop sticks) but when I was begging for someone to wet them again for me because my tongue was quite literally stuck to the top of my mouth it was so dry, the nurse replied that she would do it as soon as she had finished writing up my care notes. So although it would have taken about ten seconds to stick them under the tap which was about 5 feet away from me, it was more important to make a record of the care I was finding so lacking than to leave it to attend briefly to me and return to it seconds later. (This feature was observed generally by other patients throughout my stay - glasses of water on the patient's table would be knocked over and would be soaking into their books, phones, etc while the nurse who knocked it over would say "yes I'll mop that up after I've finished doing this"). The very worst thing was that I had to beg them through pain and tears, for about half an hour, to phone Mike and let him know what was going on. This was at about a quarter to midnight, I had explained to them that Mike was the person relaying information back to people including the kids, and they just kept repeating that it wasn't routine for them to do this. When they finally caved in because I ranted at them so hard, it took them all of 20 seconds. After which they reminded me that they don't normally do that. Appalling.
The contrast with the wonderful staff on the ward when I got there could not have been greater. They were caring, listened and even seemed to be making an effort not to wake up the other patients in the ward. The next day my two fellow travellers in the beds either side of me (aged 76 and 78 and absolutely brilliant company) took the p**s out of me for saying "oh thank you" after everything the nurses did. I suspect it was just relief at the change of attitude.
Ok rant over. There are lots of other things I want to post tomorrow that I hope will be useful for anyone else about the hospital experience and I promise a lot of them are good so it isn't all doom and gloom. Just felt I needed to get that off me chest.
Thursday, 22 October 2009
Both the remaining drains were removed this morning and, as the hospital couldn't think of anything else to do, I picked her up at 1pm.
Belinda is now at home, safe, sound, and snoozing snugly on the sofa as I type. We have taken the opportunity to appreciate her appendage - she says it's swollen, I think she's had an enlargement. Time alone will tell.
She's threatening to take control of the keyboard tomorrow... I fear my time here is coming to an end!
Wednesday, 21 October 2009
Visits today from friend Julia, John and the kids, sister Gill and brother Stephen.
A big thank you to Stephen, who came down from Cheshire to be ready to whisk Belinda to the comfort of her own home, only to be thwarted by her refusal to leave the safety of the hospital ward!
Only joking.. Shes expecting to be out tomorrow, hopefully minus a couple more drains.
We're running the blog all through the chemo and radiotherapy - and when shes fit and well, B will take over the postings - at which point they will become legally precise and grammatically perfect :o)
Anyway, its back to the footie for me (while I have the chance....)
Tuesday, 20 October 2009
First, the news:
One drain has been removed, but may have to go back as there is a swelling under Belinda's arm
Said swelling is causing discomfort so pain relief is back
It seems unlikely she'll be out tomorrow
So B was a bit down tonight :o(
On the brighter side... how did she want me to put it? Oh yes, congestion has been eased - to her great relief!!
As for the blog, if you want to comment you can either:
- Log in using your own google or yahoo mail accounts;
- Create a googlemail account and use that or
- Use the googlemail account I've set up for the blog tonight.
- Click on the comments link under the blog entry
- Type in your comment
- When you're ready to post, select Google Account from the list
- When the login screen comes up, type firstname.lastname@example.org in the email box and belinda1 in the password
- Follow the instructions and your comment will be posted.
If you do this, add your name at the bottom of your comment - and remember to SIGN OUT as soon as you've posted - just in case there's a queue!!
And don't start signing us up for SPAM mail!
I'm back in town tomorrow, so further news as soon as I have it.
Monday, 19 October 2009
Following a telephone chat with Belinda at 7pm this evening I can now tell you that:
- She will be discharged "Wednesday at the earliest"
- Her cannula and catheter have been removed
- There are plans to remove 2 of the drains in the near future
- Life on the ward has returned to "normal" after the weekend
- The consultant is very happy with her
- She sounded really calm
On a less good note, preliminary results from the lymph nodes suggest she will need radiotherapy as well as chemo. She is, as ever, dealing with it!
Stay tuned for another update tomorrow night
We'd both like to thank you all for your messages of support
Sunday, 18 October 2009
Had a good visit with Lucy and Gabriel,
Pain management seems to be under control and the medical staff are happy with things.
I'm off to Leeds now. Belinda says if you want to visit could you text her first? Just in case she's sleeping, showering - or being seen.
I'll continue to do daily updates after an evening chat!!
Just had a quick chat with Belinda key points of which are:
1. A patient "with mental health issues" roams the wards at lights out standing at the end of everyones beds - not conducive to restful sleep
2. Said patient screams when restrained by staff - ditto
3. A reduction of pain relief by the staff means the lymph node wound site has become extremely painful - ditto x 2
4. The pain relief caused B a bout of sickness this morning
So, a less happy bunny than yesterday.
I know hospitals at weekends are on skeleton staff with senior physicians hard to get hold of, but after an op like this (with the emotional issues it carries) the ward seems to be struggling to cope...
Saturday, 17 October 2009
I received a text from B this morning and have now spoken to her.
It seems the problems with pain management were more about a failure to adopt the mantra than anything else and I suspect that Belinda is contemplating legal action!
Anyway, she's now on Keate Ward (Bay 14), 5th Floor, St Georges Hospital, Tooting with a sore throat, a button to press for pain relief - and a bowl of rice krispies!! She sounds pretty tired but says whe has slept OK so far.
I'm going in at 3pm to visit so I'll update later after establishing visual contact.
Visiting is 3pm - 8pm for anyone who wants to go... but tomorrow/Monday may be better. If you want to check first, Call/text me after 4pm on 07794 178079.
Friday, 16 October 2009
I started ringing Keate Ward at 5:30pm and finally got the go-ahead to go in at 7:45.
When I got there she still wasn't back - and still hadn't arrived when I left at 9:15...
The night staff rang the Recovery Room before I left and found out that although the op was a success she was in quite a lot of pain and that the 1-to-1 care she was getting there was better than bringing her back to the ward. She had told the anaesthetist that she has problems with morphine and they were trying to get the right balance of non-morphine alternatives.
I seem to remember a mantra from my time in the NHS (non-medical!) that "pain is what the patient says it is".
I decided it was probably best to leave as she'd be exhausted when she finally got back.
I'll call in the morning and post an update then.
Good night all!
A very upbeat Belinda (and I) went to St Georges at 7am this morning (actually we were a little late cos she walked to the station replying to texts!).
After a few tests and checks she was called to the Operating Theatre at 12 noon, looking very fetching in a hospital nightshirt and dressing gown and with a large purple arrow marking the correct breast...
Once she's finished in post op (about 5pm) she'll be transferred to Keate Ward.
I'm visiting this evening for a short while so I'll report back later with a status report!!
Thanks for the comments so far. Its nice to know people are following.