Saturday, 31 October 2009

why don't I understand metric?

Am I showing my age if I say I only work in imperial? It suddenly occurred to me last night that 700mm can't be right. I mean that's 70 cm isn't it? That's bigger than I am wide! (or I'd like to think so...!) so I think it must have been 50mm and 70mm. Just in case anyone's still reading this and thought I'd turned into a walking tumour..

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

to those down under...

Thanks Stephen and Jenny for the lovely flowers! hope you're having a great time xx

Wednesday, 28 October 2009

...and the results:

Had my hospital appt this afternoon to get the results of the tumour analysis. Bit of a mixed bag really but as the surgeon said, no major surprises.

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

Who does she think she is?

Certainly not a blogger!!

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!!

M :o)

Saturday, 24 October 2009

home, sweet home

well when I said lots of things I want to post tomorrow, I meant post soon. Have had lots of lovely visitors and flowers today and have the kids tomorrow so will probably post more next week. Still very tired and achey/sore. Have a rota of people coming to look after me next week as well as some half-term visitors Tues and Wed - Bridget will be here on Monday and Tuesday night and Dr Penny will be over to visit on Monday night; my sister Gill will be here Wednesday, Thursday and possibly Friday nights, with visits from Janet on Tuesday and Helen on Wednesday and Alice cooking us a lovely meal on Thursday night; and Najma from work is coming over the weekend to tantalise with her fabulous Mauritian cooking!

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

Hi honey, I'm home!!

There are few things I have experienced over the last short while that can possibly have felt as lovely as walking in through my front door. Thanks to everyone for their comments and kind thoughts, and of course to Mike for setting this up and running it so splendidly - I'm really glad it's been so popular. I had the awful feeling it could be seen as being like those dreadful round robin letters you sometimes get at Christmas telling you about the dog's operation back in March to remove bad breath, but obviously people haven't seen it that way, and Gill being able to follow it whilst in Hong Kong seeing her new grandson was a clear bonus!

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.

(ha ha)


Thursday, 22 October 2009

6 o'clock and all's well

Hi there

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!

A demain


Wednesday, 21 October 2009

Wednesday night football.... not what Belinda has been watching!

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....)

More tomorrow


Tuesday, 20 October 2009

Tuesday night

Evening blog followers

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:
  1. Log in using your own google or yahoo mail accounts;
  2. Create a googlemail account and use that or
  3. Use the googlemail account I've set up for the blog tonight.
To do this:
  • 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 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.

M :o)

Monday, 19 October 2009

Long distance update

Evening all!

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

Mike x

Sunday, 18 October 2009

Sunday afternoon

Hi all

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!!


Queasy like a Sunday morning

Hi All

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...

More later


Saturday, 17 October 2009

After the visit

Here she is, doing pretty well!
Her experience in Recovery wasn't great but she's comfortable on the ward although an old arm injury is causing more discomfort than the op. She's tired but the view of the reconstruction is that "its a good one"!
I'm visiting again tomorrow with Lucy and Gabriel so I'll update again after that. Then I'm off to Leeds to work for a couple of days but I'll be updating the blog after phone conversations with Belinda in the meantime.
Thats all for now.

10am update: Once a barrister....

Now corroborated!!

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

"Op a success - problems with pain management"

As yet uncorroborated by Belinda!

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!

AM Friday


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.


Thursday, 15 October 2009

This is a test

Hi all

Hoping this works!!

The latest updates from Belinda will appear here soon.