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 :-)
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