How can it be 23rd September?
You have in front of you all the evidence you need to know why I'd be a rubbish blogger - there I was - telling you the story of my experiences and I left us all hanging, waiting to see what happened with the radiotherapy!
Catch up time (this is likely to be very rambly, so you'll be excused if you want to just skim read)
My radiotherapy started with a CT scan at the end of June. The process includes careful examination of exactly where the lump used to be and tattoos on my chest to ensure that the equipment used to deliver the radiotherapy can line up to exactly the same spot, every single time. I say 'tattoo' ... turns out they were actually blue biro spots dotted on my skin and then scratched to make them permanent - classy! I have one between my breasts and one on either side of my chest - only visible if you really have a close look.
Part of the process while having the scan, which included getting on and off the table to practice getting lined up, was checking if I could hold my breath. Having had a lump on the left hand side, the radiation dose that was going to be delivered was likely to also catch the edge of the lung on that side, but also could catch the edge of my heart. The assumption is always that what ever the potential side effects of having radiotherapy, the sterilisation of the tissue where the lump had occurred is of more benefit. I'm not one to argue with the medics. The breath holding was to ensure everything about me was as still as possible during the delivery of the dose, minimising as much as possible the impact to the surrounding organs. My years of yoga practise have had many benefits over the years, this was one of them! I'm pretty good at holding my breath, but I also understood that it was the stillness they were looking for; I got a gold star for being the best at breath control that week. I'm so easily pleased.
Couple of weeks later, starting 7th July, I rocked up for my first session.
St Thomas' is just off Westminster Bridge and I'd asked if I could have early appointments as I was intending to go into work each day. The first moment of joy was discovering that they have an M&S Cafe as part of the offering for visitors! My route in was going to be the overground and then underground with the route out a bus to the office in Streatham.
My tendency to catch early trains, getting into the central bits of London before the 8am rush, meant that there were a couple of occasions when I was there before the staff. July was a very hot month and the waiting area for the unit had a very efficient air con unit so actually I was very happy to be early and waiting.
The treatment took 3 weeks (every work day) and I was usually in there between 8.30 and 9. The actual zapping takes about a minute in total, the majority of the time you're in there is the process of getting you lined up and in exactly the right positon to ensure it's only the breast and ex-lump area that get blasted.
A lot of the pre-treatment meetings throughout this entire process are to give you lots of details of possible side effects (and to sign things saying you're not pregnant!) and I think I did pretty well. I was diligent with the cream it's suggested you apply, slapping it on twice a day. I also wore all the horrible big soft bras to reduce the rubbing on the area. It's not a painful process, but I did experience swelling of the tissues (this poor breast has been yoyoing in size ever since this started!) and after the first couple of weeks I definitely knew I was cooking from the inside. I also understood why they wanted me to keep hydrated, if you're cooking you dry out really quickly!
All the staff were amazing as of course you'd expect - patient with the patients, quick and efficient with the processes - we had one day when I took twice the usual time because we just couldn't get me straight. The dose was delivered correctly, but it took much longer than it should have done. I did pretty well on the breath holding, I reckon I hit my mark about 90% of the time.
The last treatment was 27th July; the day before I had a check up, but all they were really interested in was the state of my skin, which everyone had been happy with so there wasn't anything for anyone to be concerned about.
It was in the last week and then on into the next four that I really understood what was meant by the fatigue that is often a side effect of radiotherapy. It's slightly odd in that I didn't feel tired as such, (I wasn't sleeping any more than usual) but with no real energy to do anything. I went into work each day and was very grateful for the routine and the chance to focus on something that wasn't about me. Of course being around people is also a good thing, even if only to remind you how nice it is to be on your own in the evening ... but that was about all I could manage, home and sofa sitting. I also seem to have lost the urge to drink at home ... which is odd ... if I'm out with friends I'm happily having wine (although I seem to have become a bit of a lightweight) but at home I'm making cups of tea and baking cakes instead.
The end of August brought another check in with the Oncology department, another look at the boob (everyone is thrilled with how it looks - I've had to stop myself from pointing out it looked better before ...) and check on side effects - which meant I'd run out of excuses to start on the Tamoxifen.
23rd September and I'm 30 days in on the oestrogen suppressant. The list of side effects is horrendous (if you read the leaflet) and different according to each professional I've spoken to. I've not turned into a dried up hag yet, but I could be taking these pills for five years so that may happen anyway.
The basic summary for the last three months is that I'm fine. I look well, the girls look pretty much as they used to (when I'm in the molded bras - the soft ones do look a bit lopsided now and I've had to rethink some of my outfits as it's not attractive when all the buttons on your shirt pull heavily to the right) I feel quite normal and mostly just incredibly lucky that it's all been straight forward and now it's just regular check ups.
Friday 23 September 2016
Friday 3 June 2016
3 Is A Magic Number
Wednesday 1st June I finally got the results of my gene test, bringing to a close the longest three weeks I think I've ever experienced.
As a quick recap I was looking for a number under 18 ... I got a three! I may have punched the air ... Dr Martin was almost as pleased as I was!
The combination of my score, lump size, negative nodes and a couple of other bits mean that have I have best possible prognosis for long term survival with no need for chemotherapy.
I have a couple more appointments to go before I start radiotherapy. It seems likely that will start in July at this rate - four weeks of daily doses which will happen at St Thomas' so I'll have a new hospital to visit.
Dr Martin was trying to tell me about the possible side effects of radiotherapy and tamoxifen, I was sitting there grinning like a loon. I did explain to him that I'd been more worried about chemo than the cancer and he seemed to understand.
I have more leaflets to read (I quipped that I wasn't actually going for the full set) and more letters to wait for, but at the moment I'm back to full on positive mode.
As a quick recap I was looking for a number under 18 ... I got a three! I may have punched the air ... Dr Martin was almost as pleased as I was!
The combination of my score, lump size, negative nodes and a couple of other bits mean that have I have best possible prognosis for long term survival with no need for chemotherapy.
I have a couple more appointments to go before I start radiotherapy. It seems likely that will start in July at this rate - four weeks of daily doses which will happen at St Thomas' so I'll have a new hospital to visit.
Dr Martin was trying to tell me about the possible side effects of radiotherapy and tamoxifen, I was sitting there grinning like a loon. I did explain to him that I'd been more worried about chemo than the cancer and he seemed to understand.
I have more leaflets to read (I quipped that I wasn't actually going for the full set) and more letters to wait for, but at the moment I'm back to full on positive mode.
Wednesday 11 May 2016
Hmmm ...
I've just had my upbeat disposition given a bit of a knock.
I'd understood this afternoon's appointment was to sort out my radiation treatment, possibly a tattoo or two, a schedule of sorts, that kind of thing.
It turned out that this was actually my first meeting with the Oncology team.
Up until now I've been under the influence of the surgeons. Not unnaturally they see their role as the main one, the bad bit has been cut out, no trace of any more bad bits, job's a good'un, a bit of a zap and some tablets and all will be well.
Things didn't start well when it took three hours for me to be seen. They were a doctor short and of course these things happen, but it did make for a very long afternoon.
The charming chap I finally saw had a very thick accent, which meant I had to really concentrate on what he was saying - no bad thing really.
I got a summary of where we were at the moment, (operation, nothing in the nodes taken from my armpit, no history of this disease in my family - we came back to that a couple of times), there is no disease in my body. But ... but ... this is Oncology, basically they always recommend Chemotherapy as well as Radiotherapy and tablets.
I felt the wind coming out of my sails (if that's an appropriate way to describe it) at every point in this process to date I'd been told Chemo wouldn't be necessary. I had to piece together for myself that what I was really facing was the different disciplines beliefs about what is best for the patient. I know it's all coming from a good place, but Chemo was the one thing I really didn't want to experience.
I focused back on what was being said.
The current tests show two markers, the one that's about hormones is positive (bad - therefore the tablets are a given) the other one is negative, but I got the impression that this group of doctors always know better and would rather make absolutely certain with more chemicals. (I'm probably being very unfair, his accent was very thick and I probably shouldn't be trying to read a subtext into someone else's discussion).
In actual fact what is happening now is more tests.
Thank goodness the use of Chemo is subject to cost benefit analysis. The tests are the gene therapy ones (that to be fair were mentioned as a possibility during the biopsy discussion) and the numbers will fall into one of three groups. Less that 18, the cost outweighs the possible benefits and the decision is likely to be no. Over 31 and the benefits outweigh the costs (2% increase in a long-term lack of return of the nasty) so that'll be a yes. A number in the middle and it gets fuzzy. So fingers crossed I'll have a low number. And that I might get a say in what happens? I sort of doubt that, but I can dream.
They like to do Chemo within two months of the operation so the clock is ticking. They'll see me again in three weeks when they'll have the results of the gene tests and then the next steps will be decided (and they'll discuss side effects - cheers!)
I left in a bit of a daze and a bit upset - but I've had a chance to think and really I'm where I've always been - there is more to be tested, more results to get and further action to be taken when we know what we've got.
Onward
I'd understood this afternoon's appointment was to sort out my radiation treatment, possibly a tattoo or two, a schedule of sorts, that kind of thing.
It turned out that this was actually my first meeting with the Oncology team.
Up until now I've been under the influence of the surgeons. Not unnaturally they see their role as the main one, the bad bit has been cut out, no trace of any more bad bits, job's a good'un, a bit of a zap and some tablets and all will be well.
Things didn't start well when it took three hours for me to be seen. They were a doctor short and of course these things happen, but it did make for a very long afternoon.
The charming chap I finally saw had a very thick accent, which meant I had to really concentrate on what he was saying - no bad thing really.
I got a summary of where we were at the moment, (operation, nothing in the nodes taken from my armpit, no history of this disease in my family - we came back to that a couple of times), there is no disease in my body. But ... but ... this is Oncology, basically they always recommend Chemotherapy as well as Radiotherapy and tablets.
I felt the wind coming out of my sails (if that's an appropriate way to describe it) at every point in this process to date I'd been told Chemo wouldn't be necessary. I had to piece together for myself that what I was really facing was the different disciplines beliefs about what is best for the patient. I know it's all coming from a good place, but Chemo was the one thing I really didn't want to experience.
I focused back on what was being said.
The current tests show two markers, the one that's about hormones is positive (bad - therefore the tablets are a given) the other one is negative, but I got the impression that this group of doctors always know better and would rather make absolutely certain with more chemicals. (I'm probably being very unfair, his accent was very thick and I probably shouldn't be trying to read a subtext into someone else's discussion).
In actual fact what is happening now is more tests.
Thank goodness the use of Chemo is subject to cost benefit analysis. The tests are the gene therapy ones (that to be fair were mentioned as a possibility during the biopsy discussion) and the numbers will fall into one of three groups. Less that 18, the cost outweighs the possible benefits and the decision is likely to be no. Over 31 and the benefits outweigh the costs (2% increase in a long-term lack of return of the nasty) so that'll be a yes. A number in the middle and it gets fuzzy. So fingers crossed I'll have a low number. And that I might get a say in what happens? I sort of doubt that, but I can dream.
They like to do Chemo within two months of the operation so the clock is ticking. They'll see me again in three weeks when they'll have the results of the gene tests and then the next steps will be decided (and they'll discuss side effects - cheers!)
I left in a bit of a daze and a bit upset - but I've had a chance to think and really I'm where I've always been - there is more to be tested, more results to get and further action to be taken when we know what we've got.
Onward
Monday 9 May 2016
It goes so fast!
It's been nagging at me that my last update was a bit miserable - a state that didn't last that long and only occasionally visits for a moment or two.
In fact the whole thing has been so quick I've not really had much chance to dwell, for which I am very grateful.
The latest news is that last week I started back at work (working from home for the first couple of days) and on Wednesday 4th May I went back to the PRU for my update with the surgeon.
It was actually the lovely and very tall Dr Dave I saw (he had assisted - he wasn't sure if I'd remember him and I told him he'd been in his scrubs when we met and of course I remembered - he seemed strangely pleased). It's all good - which is how he started the meeting - bless him - it's the kindest thing anyone can do in these circumstances - cut to the chase.
smile emoticon
No cells in the lump margins, nothing found in the two lymph nodes taken from my armpit so no need for further operations. Now it's just radiation (as a lump was taken rather than the whole breast they need to sterilise the area to knock out any pre-cancerous cells) and anti-hormone tablets to reduce the risk of anything coming back.
I insisted he look at the girls ... On reflection I'm not sure he'd intended that but hey, they enjoy the attention. smile emoticonAll looks good, healing well, another six weeks for the bruising to go down ... I do like a target. I remembered to ask if I could wear deodorant again (I can) and I pointed out the odd things I wanted reassurance about. His main response was that my joie de vivre demonstrated that I wasn't suffering from sepsis and that I was obviously fine. He had been telling me about the next stages and that there would be literature from the oncology team - I'd explained I already had a pile of literature from my experiences so far and that actually what we needed was Cliff Notes on how the whole thing works. Which lead to a fabulous little explanation to his colleague exactly what Cliff Notes are and about his experience of buying some in Foyles before their refit.
I went back into the office on Thursday and had a lovely mixture of greetings and enquiries after my health, along with more minimal 'nice to see you back', which was exactly what I wanted - I wanted to get on with my work.
The weekend just gone was gloriously warm and reminded me that it's easy to do too much without thinking you are - I spent a lot of time sleeping! I did get in a long walk on Sunday and I'm finally starting to think I might be able to resume my normal sleeping position (on the side that's been operated on).
My radiation 'fitting' meeting is this coming Wednesday and I'll be a little quicker to share what happens this time.
Thursday 21 April 2016
Random musings
The nurse came on Wednesday and took the dressings off the two wound areas leaving just the strips in place that will be washed off on Monday, hopefully with the stitches with them. I ticked all the boxes, had a fresh strip put on the one in my armpit and was left to get on with things.
About noon a friend arrived for lunch - bringing with her so many things that I now have a fridge stuffed full - which is such a gift! It hadn't even occurred to me how useful that might be - if ever you find yourself with a friend going through any event like this, don't even ask, rock up with food for the fridge - if I'd been asked, I would have said I was fine, that I didn't need anything - but suddenly I don't have to food shop or even think about it!
'Take it easy' is so much harder than you'd think! When sitting at work the idea of just being on the sofa reading sounds divine. Not really being able to gauge how much energy you have or how easy it is to just overreach slightly and find that you're in pain or crying from being tired - very annoying!
Today (Thursday) I'll be in pj's until after lunch (which is in the oven as I type) then I'll, slowly, be washing all the bits of myself I'm allowed to, putting on some real clothes and then getting back on the sofa. Later I'll take a slow walk to buy milk.
Planning and achieving small victories is important.
The nurse who told me the pain killing drugs put in me during the operation can last for five days was right ... and I'm being more diligent about taking the regular pain killers I've been given - they're nothing special, but it's worth keeping a steady flow going.
This is the first time I've found myself feeling a bit sorry for myself - it won't last, I just don't work like that, but it is very interesting the bits that you realise you don't have control over and that you have to ride through.
About noon a friend arrived for lunch - bringing with her so many things that I now have a fridge stuffed full - which is such a gift! It hadn't even occurred to me how useful that might be - if ever you find yourself with a friend going through any event like this, don't even ask, rock up with food for the fridge - if I'd been asked, I would have said I was fine, that I didn't need anything - but suddenly I don't have to food shop or even think about it!
'Take it easy' is so much harder than you'd think! When sitting at work the idea of just being on the sofa reading sounds divine. Not really being able to gauge how much energy you have or how easy it is to just overreach slightly and find that you're in pain or crying from being tired - very annoying!
Today (Thursday) I'll be in pj's until after lunch (which is in the oven as I type) then I'll, slowly, be washing all the bits of myself I'm allowed to, putting on some real clothes and then getting back on the sofa. Later I'll take a slow walk to buy milk.
Planning and achieving small victories is important.
The nurse who told me the pain killing drugs put in me during the operation can last for five days was right ... and I'm being more diligent about taking the regular pain killers I've been given - they're nothing special, but it's worth keeping a steady flow going.
This is the first time I've found myself feeling a bit sorry for myself - it won't last, I just don't work like that, but it is very interesting the bits that you realise you don't have control over and that you have to ride through.
Tuesday 19 April 2016
Timeline
What happened when:
(seemed useful to have this in one place and I'll update it as I get my appointments)
8th March Mammogram (part of regular screening programme)
29th March Referral to Breast Clinic where ultrasound was done and a needle biopsy for further checks
7th April Results of biopsy showing cancerous cells, appointment made for surgery that day
11th April Pre Op assessment
14th April insertion of wire and radioactive dye
15th April Operation (home the same day)
17th April Nurse visit
20th April Nurse visit for removal of dressings
25th April Remove stitches (in shower)
4th May Appt with Surgeon
11th May Appt with clinical oncology (to discuss next steps)
1st June Result of gene therapy test (no need for Chemo)
23rd June CT Scan
7th July - 27th July (weekdays) Radiotherapy
(seemed useful to have this in one place and I'll update it as I get my appointments)
8th March Mammogram (part of regular screening programme)
29th March Referral to Breast Clinic where ultrasound was done and a needle biopsy for further checks
7th April Results of biopsy showing cancerous cells, appointment made for surgery that day
11th April Pre Op assessment
14th April insertion of wire and radioactive dye
15th April Operation (home the same day)
17th April Nurse visit
20th April Nurse visit for removal of dressings
25th April Remove stitches (in shower)
4th May Appt with Surgeon
11th May Appt with clinical oncology (to discuss next steps)
1st June Result of gene therapy test (no need for Chemo)
23rd June CT Scan
7th July - 27th July (weekdays) Radiotherapy
Monday 18 April 2016
Persistence
Sunday afternoon I had just come back from shuffling down to the post box with my sick note for work when the door bell rang. I really wasn't expecting anyone so I was pleasantly surprised to see a nurse on the doorstep.
Seems she'd been trying to get hold of me all weekend - I have another top tip for you - don't change your home phone provider (and then discover the new phone line doesn't work) the day before you have an operation. A Virgin lad had been round on the Saturday and put a new switch in my slot ... I didn't ask further in case I made him blush, but no one had the new Virgin number - and my mobile number had had a 3 replaced by a 5 in the notes she had. So on the off chance that I was in and because she was in the area, she rang the door bell.
Quick check of the dressings (which meant drawing on one as there had been a bit of an ooze, but nothing serious and she was just marking it to check it didn't get any worse) and a general discussion on how things were going. Which included her taking a monitoring pad off my back - it seemed I'd been wearing that since Friday, she also pointed out I was still orange from the stuff they cover you with in surgery and had developed a bit of a rash from something rubbing. Goodness knows what she thought, I must have looked very grubby and like I'd not really checked my bits at all!
I was also warned that the general anesthetic and pain killers they gave me during the operation will be in my system for five days so I should expect to be a bit up and down and that it was worth keeping up a reasonable routine of taking the tablets I'd been given. I can get a bit stupidly stoic over things like that so it was very useful to have a nurse tell me to take the pills.
Next set of important dates, I'll get another nurse on Wednesday (phone call between 8 and 9 - all the phones now work and she has all the correct numbers!) at which point they'll take off the dressings (slightly nervous about the ouch factor in that!) then the following Monday I'll be allowed to properly shower and pull out my stitches (if I want) (they're the ones that dissolve so actually it should be quite straight forward and I'm not particularly squeamish) or I can make an appointment for the nurse at my surgery to take them out.
I got permission to shower below the waist as I have a hand-held device (that sounds wrong ... but I'm leaving it there for the comedy value!) and bless her cotton socks she washed my hair for me.
Hearing that she had just come from an 80 year old lady who had announced that she was feeling fine and was off out I felt a bit guilty about being in my pj's so I washed the bits I could reach, wiped the rest of me and put on some clothes to venture to Tesco's for wet wipes (and other tip/obvious thing I should have thought of! You need loads of wet wipes when you're not allowed to shower or use deodorant!)
Monday I walked to the Dr's to deliver my surgery note and ask them to process my prescription application - another of the 'benefits' of cancer is that I'll have five years worth of free prescriptions. I then caught a bus into Croydon to buy a couple of larger bras - which I did, deciding that maternity ones looked the softest.
All of which meant I overdid things a bit and I got home cold and tired; silly Lucy. I fed myself, took painkillers and then cranked up the heating and the number of covers I had for a sofa nap - woke up bright red but feeling much better :-)
Tuesday will be spent in the house!
Oh and hoovering counts as heavy labour so I can't do any of that for the moment ... I didn't like to confess I only hoover if someone is coming to visit so that isn't going to make a lot of difference :-)
Quick check of the dressings (which meant drawing on one as there had been a bit of an ooze, but nothing serious and she was just marking it to check it didn't get any worse) and a general discussion on how things were going. Which included her taking a monitoring pad off my back - it seemed I'd been wearing that since Friday, she also pointed out I was still orange from the stuff they cover you with in surgery and had developed a bit of a rash from something rubbing. Goodness knows what she thought, I must have looked very grubby and like I'd not really checked my bits at all!
I was also warned that the general anesthetic and pain killers they gave me during the operation will be in my system for five days so I should expect to be a bit up and down and that it was worth keeping up a reasonable routine of taking the tablets I'd been given. I can get a bit stupidly stoic over things like that so it was very useful to have a nurse tell me to take the pills.
Next set of important dates, I'll get another nurse on Wednesday (phone call between 8 and 9 - all the phones now work and she has all the correct numbers!) at which point they'll take off the dressings (slightly nervous about the ouch factor in that!) then the following Monday I'll be allowed to properly shower and pull out my stitches (if I want) (they're the ones that dissolve so actually it should be quite straight forward and I'm not particularly squeamish) or I can make an appointment for the nurse at my surgery to take them out.
I got permission to shower below the waist as I have a hand-held device (that sounds wrong ... but I'm leaving it there for the comedy value!) and bless her cotton socks she washed my hair for me.
Hearing that she had just come from an 80 year old lady who had announced that she was feeling fine and was off out I felt a bit guilty about being in my pj's so I washed the bits I could reach, wiped the rest of me and put on some clothes to venture to Tesco's for wet wipes (and other tip/obvious thing I should have thought of! You need loads of wet wipes when you're not allowed to shower or use deodorant!)
Monday I walked to the Dr's to deliver my surgery note and ask them to process my prescription application - another of the 'benefits' of cancer is that I'll have five years worth of free prescriptions. I then caught a bus into Croydon to buy a couple of larger bras - which I did, deciding that maternity ones looked the softest.
All of which meant I overdid things a bit and I got home cold and tired; silly Lucy. I fed myself, took painkillers and then cranked up the heating and the number of covers I had for a sofa nap - woke up bright red but feeling much better :-)
Tuesday will be spent in the house!
Oh and hoovering counts as heavy labour so I can't do any of that for the moment ... I didn't like to confess I only hoover if someone is coming to visit so that isn't going to make a lot of difference :-)
Saturday 16 April 2016
Home
Friday started early, I had to get my light breakfast done by 7.30am - and more importantly my last cup of tea!
By now I was getting quite casual about this 'need to be on time' lark and I got on my bus at just gone 11am (appointment was 12.30pm but I'd been told so many times that I was last on the list and that I should bring two books to keep myself entertained with that I wasn't sweating this one too much).
by 12.10 I was in the hospital and being taken down to the ward - where I retained my obnoxiously cheerful demeanor while one of the ward support staff took me through the questionnaire (you are asked your own date of birth so often that after a while you start to doubt yourself!), followed very quickly by the anesthetist (who apparently had been looking for me at 11.30am! If I'd known that I would have been on that early bus!) and then one of the surgeons who would be assisting (this one was a lady, which was nice to see) - I confessed about my early history of a heart murmur (nothing to worry about but I wanted people to know in case something happened - mostly so they would know it wasn't their fault ... I'd not taken any drugs, honest!) and my worries about a period that had been due to start the day I was given my diagnosis but had since vanished - scared off I assume by more important concerns.
Oh yes, which reminds me about the first real laugh - you have to take a specimen in so they can do a pregnancy test (all women between 12 and 55 if being operated on need testing - which is a sobering thought) - the support nurse looking after me came back from having done the test with a slightly solemn look; 'it's negative, I'll retest it in a moment but it seems to be negative'. 'Thank goodness!' I almost shrieked in her ear, ' it's SUPPOSED to be negative!'
Having talked to three different people and received my completed set of paperwork (including a note for work - very efficient!) I finally got to the joy of taking off all my clothes to put on the infamous hospital gown and a pair of paper knickers ... oh and then the addition of a fetching pair of knee high pressure stockings to stop my blood pooling in my feet ... there really is no way to maintain your dignity when they're about to put you out cold and open you up! I think it was about this time the surgeon and his assistant arrived - I managed to stumble out some words about him doing his best work and how beloved the rack is ... he managed to remember that it's the smaller one he'd be working on and made a joke about me giving him grief for that - so I think he knew who I was ...
All of this had taken about an hour, possibly an hour and a half, so I perched on my chair, trying not to flash anyone and got my book out. Two pages in another man came over to say 'I'm here to take you down', to which I (quite naturally in my mind) said 'can I take my book?' and looked shocked when he said 'no'.
He was there to take me to the theatre ... 'but I'm last on the list', 'yes, that's now' - poor thing must've thought I'd completely lost it!
I put on my specially purchased robe and new slippers and was walked down to the anesthetists room - where a total of six men sorted me out (one of them had changed profession from electrician to nurse - good chap!) ... robe and slippers off, gown untied as I lay on my back, discrete slipping of one arm out of the gown so a monitoring cuff could be put on, then the other arm, then a mask over my face with oxygen. All beautifully done, not rushed but not much chance to think about anything, very respectful - and then I was out like a light.
Coming round was odd - I sleep on my side so being propped up on my back wasn't good for me - I'm afraid I might've been one of those moaners ... not in the good way, but in the whimpering way - just couldn't get comfortable.
I was dozy for a while and I'm pretty certain in that time the surgeon came round to say they'd got it all and that there had been nothing in the lymph nodes in the armpit - but I'm guessing that will be confirmed at the follow up in two and a half weeks - plus I was still pretty out of it so I'm not entirely certain what was said.
There is very little that can be more welcome, delicious and just generally great than the first cup of tea and a plain digestive. It's when you finally start to feel human again.
There's more paperwork (including a note for my GP to explain what's happened 'Routine, clear Axilln, No concerns' magic words) instructions about what to do when I get home, a packet of drugs and then it's time to phone the friend who's picking me up. (Oh and I put my own clothes on again of course!)
Poor love, she was just pulling into the hospital when they rang - so of course it rang out and they thought she was MIA. She was actually about to come through the doors onto the ward with immaculate timing.
So I'm home now, a another friend stayed the night on my sofa to make sure I didn't do anything silly and generally ran around making me tea and food - bless her. I'm taking painkillers and starting on the stretching exercises while watching a bit of bad TV.
Throughout this entire experience (eight days from the delivery of diagnosis to the operation) I can only praise and thank the amazing staff of the NHS - every appointment was quick and efficient, every nurse, every doctor, kind, generous with their time, patient with their patient.
And all my friends both near and far who have rallied round with support and kind words - you are all much loved and I'm a very lucky person to have you all in my life.
There will be follow up appointments, radiation treatments and generally time to heal - and I'll keep a few notes going on these pages as a record of what happens - but I absolve you all from the need to read any more if you don't want to :-)
By now I was getting quite casual about this 'need to be on time' lark and I got on my bus at just gone 11am (appointment was 12.30pm but I'd been told so many times that I was last on the list and that I should bring two books to keep myself entertained with that I wasn't sweating this one too much).
by 12.10 I was in the hospital and being taken down to the ward - where I retained my obnoxiously cheerful demeanor while one of the ward support staff took me through the questionnaire (you are asked your own date of birth so often that after a while you start to doubt yourself!), followed very quickly by the anesthetist (who apparently had been looking for me at 11.30am! If I'd known that I would have been on that early bus!) and then one of the surgeons who would be assisting (this one was a lady, which was nice to see) - I confessed about my early history of a heart murmur (nothing to worry about but I wanted people to know in case something happened - mostly so they would know it wasn't their fault ... I'd not taken any drugs, honest!) and my worries about a period that had been due to start the day I was given my diagnosis but had since vanished - scared off I assume by more important concerns.
Oh yes, which reminds me about the first real laugh - you have to take a specimen in so they can do a pregnancy test (all women between 12 and 55 if being operated on need testing - which is a sobering thought) - the support nurse looking after me came back from having done the test with a slightly solemn look; 'it's negative, I'll retest it in a moment but it seems to be negative'. 'Thank goodness!' I almost shrieked in her ear, ' it's SUPPOSED to be negative!'
Having talked to three different people and received my completed set of paperwork (including a note for work - very efficient!) I finally got to the joy of taking off all my clothes to put on the infamous hospital gown and a pair of paper knickers ... oh and then the addition of a fetching pair of knee high pressure stockings to stop my blood pooling in my feet ... there really is no way to maintain your dignity when they're about to put you out cold and open you up! I think it was about this time the surgeon and his assistant arrived - I managed to stumble out some words about him doing his best work and how beloved the rack is ... he managed to remember that it's the smaller one he'd be working on and made a joke about me giving him grief for that - so I think he knew who I was ...
All of this had taken about an hour, possibly an hour and a half, so I perched on my chair, trying not to flash anyone and got my book out. Two pages in another man came over to say 'I'm here to take you down', to which I (quite naturally in my mind) said 'can I take my book?' and looked shocked when he said 'no'.
He was there to take me to the theatre ... 'but I'm last on the list', 'yes, that's now' - poor thing must've thought I'd completely lost it!
I put on my specially purchased robe and new slippers and was walked down to the anesthetists room - where a total of six men sorted me out (one of them had changed profession from electrician to nurse - good chap!) ... robe and slippers off, gown untied as I lay on my back, discrete slipping of one arm out of the gown so a monitoring cuff could be put on, then the other arm, then a mask over my face with oxygen. All beautifully done, not rushed but not much chance to think about anything, very respectful - and then I was out like a light.
Coming round was odd - I sleep on my side so being propped up on my back wasn't good for me - I'm afraid I might've been one of those moaners ... not in the good way, but in the whimpering way - just couldn't get comfortable.
I was dozy for a while and I'm pretty certain in that time the surgeon came round to say they'd got it all and that there had been nothing in the lymph nodes in the armpit - but I'm guessing that will be confirmed at the follow up in two and a half weeks - plus I was still pretty out of it so I'm not entirely certain what was said.
There is very little that can be more welcome, delicious and just generally great than the first cup of tea and a plain digestive. It's when you finally start to feel human again.
There's more paperwork (including a note for my GP to explain what's happened 'Routine, clear Axilln, No concerns' magic words) instructions about what to do when I get home, a packet of drugs and then it's time to phone the friend who's picking me up. (Oh and I put my own clothes on again of course!)
Poor love, she was just pulling into the hospital when they rang - so of course it rang out and they thought she was MIA. She was actually about to come through the doors onto the ward with immaculate timing.
So I'm home now, a another friend stayed the night on my sofa to make sure I didn't do anything silly and generally ran around making me tea and food - bless her. I'm taking painkillers and starting on the stretching exercises while watching a bit of bad TV.
Throughout this entire experience (eight days from the delivery of diagnosis to the operation) I can only praise and thank the amazing staff of the NHS - every appointment was quick and efficient, every nurse, every doctor, kind, generous with their time, patient with their patient.
And all my friends both near and far who have rallied round with support and kind words - you are all much loved and I'm a very lucky person to have you all in my life.
There will be follow up appointments, radiation treatments and generally time to heal - and I'll keep a few notes going on these pages as a record of what happens - but I absolve you all from the need to read any more if you don't want to :-)
Thursday 14 April 2016
007
I was intending to amaze you all with the things I got done today ... bedding changing, phone error reporting, banking stuff ... and then this happened:
Whatsapp Group 'Keeping abreast of Lucy' (the lucky souls who are doing some of the heavy lifting - coming to get me tomorrow and staying overnight so that I don't embarrass myself or whatever it is that means hospitals think you shouldn't be on your own for the first 24 hours post a general anesthetic)
E: Positivity is very good. Also when I think of you being 'wired up' today I envisage a James Bond movie. Maybe we should call you Agent Waters? ;-)
K: Agent Waters!! Love it!!!
N: MoneyWaters ... LucyPenny
L: You do realize I'm now going to have to ask if I can get Radio 2 on this thing ... which will probably be the thousandth time they've heard it!
E: N, shall I let you know tomorrow evening when I have collected Agent Waters so that we can triangulate your arrival at CP?
N: We'll need to synchronize some watches. I'll be surveying from a local safe house as no access to civilians.
E: N, will transmit calculator code: '5318008' when agent is on-board. Transmit time expected to be 30 mins.
N: Roger that
N: (hehehehehehehehehe boobies)
I was at the bus stop when that arrived and I cackled out loud :-)
And then the Dr went and made a Radio Five on my wire gag before I could ask about Radio Two!
The procedure to put the wire in was very straight forward and I got to see the 'tiny' (as it was officially pronounced) lump, I then headed home, very pleased that it had only taken half an hour.
Those of you paying attention may now be screaming at the screen ... 'you've forgotten something' ... one stop before my house (on an hour long bus journey) I finally realised my phone was ringing ... 'come back, you've not had your radiation injection'.
I dashed in the house, threw my Marks ready meals and treats in the freezer (the nice Dr had said get yourself a treat!) and ran back over the road, waving frantically at the bus driver as he was about to sail past me - lovely man waited for me :-)
Total time on buses today - 5 hours
Total time in hospital including all the procedures and waiting for the anesthetic cream to take - 1 hour
The NHS are amazing, this dolt, not so much!
Anyway, I'm home now, left boob covered in gauze and micropore, waiting to see if it will actually glow with the radioactivity that is even now heading for my armpit.
PS I have only just noticed this thing is correcting to American spellings ... grrr
Whatsapp Group 'Keeping abreast of Lucy' (the lucky souls who are doing some of the heavy lifting - coming to get me tomorrow and staying overnight so that I don't embarrass myself or whatever it is that means hospitals think you shouldn't be on your own for the first 24 hours post a general anesthetic)
E: Positivity is very good. Also when I think of you being 'wired up' today I envisage a James Bond movie. Maybe we should call you Agent Waters? ;-)
K: Agent Waters!! Love it!!!
N: MoneyWaters ... LucyPenny
L: You do realize I'm now going to have to ask if I can get Radio 2 on this thing ... which will probably be the thousandth time they've heard it!
E: N, shall I let you know tomorrow evening when I have collected Agent Waters so that we can triangulate your arrival at CP?
N: We'll need to synchronize some watches. I'll be surveying from a local safe house as no access to civilians.
E: N, will transmit calculator code: '5318008' when agent is on-board. Transmit time expected to be 30 mins.
N: Roger that
N: (hehehehehehehehehe boobies)
I was at the bus stop when that arrived and I cackled out loud :-)
And then the Dr went and made a Radio Five on my wire gag before I could ask about Radio Two!
The procedure to put the wire in was very straight forward and I got to see the 'tiny' (as it was officially pronounced) lump, I then headed home, very pleased that it had only taken half an hour.
Those of you paying attention may now be screaming at the screen ... 'you've forgotten something' ... one stop before my house (on an hour long bus journey) I finally realised my phone was ringing ... 'come back, you've not had your radiation injection'.
I dashed in the house, threw my Marks ready meals and treats in the freezer (the nice Dr had said get yourself a treat!) and ran back over the road, waving frantically at the bus driver as he was about to sail past me - lovely man waited for me :-)
Total time on buses today - 5 hours
Total time in hospital including all the procedures and waiting for the anesthetic cream to take - 1 hour
The NHS are amazing, this dolt, not so much!
Anyway, I'm home now, left boob covered in gauze and micropore, waiting to see if it will actually glow with the radioactivity that is even now heading for my armpit.
PS I have only just noticed this thing is correcting to American spellings ... grrr
Wednesday 13 April 2016
Changing Sides
I've just finished my last day at work for a while and I'm about to open a small bottle of fizz, just because.
I've had the final details re dates - tomorrow it's 1.30pm for the wire insertion and Friday I have to go in for 12.30pm but I'm last on the list so they probably won't get to me until mid/late afternoon.
Continuing to be open with everyone about what's happening has been producing some extraordinary results - messages from all over with admiration, support and a general 'go get 'em' that is very gratifying. I'm also hearing from old friends and being told stories and tales about all sorts of amazing women who have been very successful in recovering from this predicament - which is exactly what I've wanted to hear!
Useful tips I've gathered (it's the little bits and pieces that the nurses don't get a chance to tell you about):
buy a couple of bras two sizes larger than normal to wear post the operation (make them wireless, cotton and front opening if possible)
You'll be in support stockings for the first 24 hours so you might want to wear trousers
practice a breathing technique that will make it easier to hold your breath for a while - radiation on the left breast means you're closer to the heart and they'll want you to keep very still - if it's not mentioned, offer to hold your breath!
If you're a reader you might want to stick to lighter subjects, YA can be very good for that sort of thing
You're likely to be very emotional post the operation (and possibly from the anesthetic) but it will pass
Oh and the reason for the post heading?
Which shoulder do you carry your handbag on? (or manbag for you gentlemen readers) one of the things I was told on Monday (I was listening even if we were in hysterics most of the time!) was that I'll need to take special care of the arm on the side of the operation (if lymph nodes are removed) burns, insect bites (not sure how you're supposed to persuade the bugs not to bite that arm in particular!) anything that can get infected are all a no-no for my left arm. As is my handbag. 50 years I've been a lefty! I tried wearing it on my right arm as practice yesterday - I couldn't find anything and that useful notch that seems to have developed on my left shoulder just isn't there on the right hand side! Of all the things I might have to deal with it didn't occur to me that my train ticket would be in the wrong place!
More tomorrow on ensuring that my lump is clearly signposted for the surgeon.
I've had the final details re dates - tomorrow it's 1.30pm for the wire insertion and Friday I have to go in for 12.30pm but I'm last on the list so they probably won't get to me until mid/late afternoon.
Continuing to be open with everyone about what's happening has been producing some extraordinary results - messages from all over with admiration, support and a general 'go get 'em' that is very gratifying. I'm also hearing from old friends and being told stories and tales about all sorts of amazing women who have been very successful in recovering from this predicament - which is exactly what I've wanted to hear!
Useful tips I've gathered (it's the little bits and pieces that the nurses don't get a chance to tell you about):
buy a couple of bras two sizes larger than normal to wear post the operation (make them wireless, cotton and front opening if possible)
You'll be in support stockings for the first 24 hours so you might want to wear trousers
practice a breathing technique that will make it easier to hold your breath for a while - radiation on the left breast means you're closer to the heart and they'll want you to keep very still - if it's not mentioned, offer to hold your breath!
If you're a reader you might want to stick to lighter subjects, YA can be very good for that sort of thing
You're likely to be very emotional post the operation (and possibly from the anesthetic) but it will pass
Oh and the reason for the post heading?
Which shoulder do you carry your handbag on? (or manbag for you gentlemen readers) one of the things I was told on Monday (I was listening even if we were in hysterics most of the time!) was that I'll need to take special care of the arm on the side of the operation (if lymph nodes are removed) burns, insect bites (not sure how you're supposed to persuade the bugs not to bite that arm in particular!) anything that can get infected are all a no-no for my left arm. As is my handbag. 50 years I've been a lefty! I tried wearing it on my right arm as practice yesterday - I couldn't find anything and that useful notch that seems to have developed on my left shoulder just isn't there on the right hand side! Of all the things I might have to deal with it didn't occur to me that my train ticket would be in the wrong place!
More tomorrow on ensuring that my lump is clearly signposted for the surgeon.
Monday 11 April 2016
Feeling the love
Oh my goodness!
If anyone is (still) asking what the point of Facebook is, you just need to look at my timeline for yesterday and today.
I'd not even been sure I was going to share my news - yes I'm loud and not easily forgotten once met ('a force of nature' is the polite phrase you're looking for) but if you have met me you'll also know that I'm actually very private - I'll tell you everything - but I won't tell you that!
I put together the first blog as an easy way of telling my colleagues at work what was going on, but also to set out how I'm approaching it and hopefully reduce anyone's potential embarrassment about 'what do I say to her now'. Putting that note on Facebook seemed like an easy way of contacting my wider circle of friends - and look what you've done! So much love and positivity! I am in awe of you all!
Today's experience was the pre-op assessment process - height, weight (I didn't look!) blood pressure, have I got false teeth and all that stuff. Then I took up the offer of a chat with a nurse from the support team - in the spirit of one should never turn down an offer of help I went along - and it was fabulous. I may end up banned from the clinic for making the nurses laugh too much :-)
Next stage is Thursday when I'll have a wire put into the breast to identify the lump (the little tiny lump) and get injected with radiation so that everything is bright and shiny for the surgeon. I come home and then go back on the Friday for the actual operation - after which I will look like a smurf! I have to warn my 'responsible adult' that I will look awful - well - even worse than usual!
I have new pj's and slippers I can't wear until I've had the op - so bring it on!
Sunday 10 April 2016
It's my turn
I'm not going to be around for the next couple of weeks and may be a bit hit and miss for a couple after that. As an introduction to the subject I can't think of a better way that with this article from the LA Times on 'how not to say the wrong thing'
It's an incredibly simple premise that works in almost any situation you can think of. The line that always stuck me as being the most profound came at the end: "And don't worry. You'll get your turn in the center ring. You can count on that."
http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407
Last Thursday (7th April) I was given the diagnosis of breast cancer. Well, to be fair, the surgeon never actually said those words, but I guess that the combination of 'take the lump out' and 'let me have a feel, I can't feel anything, it's definitely the left one isn't it' led me to draw my own conclusions.
I've had no symptoms, this discovery was entirely due to a mammogram (ladies - always attend your appointments!) and God Bless the NHS, once I'd had the protracted discussion with the surgeon about armpit lymph nodes in or out and said 'I guess we need to talk timescales' he responded with 'never mind timescales I'm giving you a date!' and he had his diary out and writing me in for Friday 15th April.
The intention is that I'll have a lumpectomy, have the minimal quantity appropriate of my lymph nodes removed, then a short course of radiotherapy and hormone tablets for the next five years.
I'll be monitored and checked on, but with luck and a fair wind, that's all it'll be.
So if you think it's a bit quiet in the office - now you know why!
As ever I'm more than happy to discuss details with anyone who wants them - but I don't want any misery stories - I only want to hear about friends/families/urban myths who have sailed through this process with minimal fuss, as that's what I intend doing!
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