Just one more radiotherapy to go, and I don't know whether tiredness is going to kick in anytime soon, but I suspect not. Yesterday, I was up at 8am and went for a run (back to beginner training again), walked into town for a few bits and pieces, got stuff ready for camping and then woke Greg up!
We went down to Cockwood, near Dawlish Warren, just for one night with Luke and his girlfriend Charlotte and stayed at Cofton Country Holiday Park. It is really nice campsite, and was a walk away from one of Greg's favourite pubs, the Anchor Inn, which sells his favourite beer, Otter. We sampled a few pints and I had a nice baked camembert and a fish pie, before we headed back to the campsite and a short visit from Greg's mum.
This morning, I woke early again and made the tea, while Greg slept and Luke and Charlotte packed up their tent to head off to another social engagement. After a sausage sandwich brekkie, we soon followed, going via Greg's dad's to say hello, and then to Darts Farm to buy a couple of crates of bottled Otter to take camping next weekend at Westermill.
The sun has been baking hot all weekend, so I have had my hat on, factor 50 suncream on my upper half, and a scarf tied around my neck and draped over my shoulder so that my radiotherapy side does not get burnt. The radiotherapy will make it ultra sensitive to sunburn for the rest of my days now, but it will be particularly sensitive early on, so I have to be very careful with it.
I have found some 'secret support' vests from M&S which fit my 'comfy' boob (the one I was given after surgery, which is like a mini-pillow) as I find my regular prosthetic boob is too big now. It matched originally, but my real boob has deflated in recent months - as my oestrogen levels have dropped, I guess - and it looks odd now. The vest tops can be worn in the summer and I think, look quite nice. If you're looking, or if I bend down, you can tell that I have no boob, but it isn't obvious to most casual observers and I'm not ashamed. When I went running, I didn't wear any prosthetic at all, I was just lopsided!
This afternoon, it has been too hot to do anything much. Greg has had to go to work to make sure his network comes back on after a scheduled power outage, I have unpacked all our camping things and put a couple of loads of washing on, and caught up on some iPlayer and 4oD TV programmes.
My last radiotherapy is tomorrow morning - I have bought the nurses a cake from Darts Farm - and I have a 4 day week before 8 days off. This of course means the weather is going to break. We can't have it all, can we?!
Sunday, May 23, 2010
Tuesday, May 18, 2010
Walk the Walk
The time for me and my wonderful friends to Walk the Walk is nearly here. We are walking a half marathon - with a bra on - for breast cancer research and causes, on 4th July.
If you feel like donating, please go to our fundraising page:
http://www.walkthewalkfundraising.org/teamflora
Particpants of Team Flora are:
Me :-)
Greg Lovell
Charlotte Adams
Hannah Wilson
Yvonne Willingham
Claire Delaney (and possibly others from the Delaney clan)
We are called Team Flora as it is a moniker I use on some internet forums I chat on, friends from which have been amazingly supportive, and some of whom are walking other Sun and Moonwalks around the country. Honestly, the internet can be amazingly supportive and powerful sometimes. I am extremely grateful for all of their support.
If you feel like donating, please go to our fundraising page:
http://www.walkthewalkfundraising.org/teamflora
Particpants of Team Flora are:
Me :-)
Greg Lovell
Charlotte Adams
Hannah Wilson
Yvonne Willingham
Claire Delaney (and possibly others from the Delaney clan)
We are called Team Flora as it is a moniker I use on some internet forums I chat on, friends from which have been amazingly supportive, and some of whom are walking other Sun and Moonwalks around the country. Honestly, the internet can be amazingly supportive and powerful sometimes. I am extremely grateful for all of their support.
Rads #10 done. 5 to go...
Hi blog fans
I have now had 10 of my 15 radiotherapy treatments and all is going well. I have a square of 'tan' where my boob used to be, and my shoulder is slightly red, but at the moment it is not sore - just a little itchy occasionally. I'm feeling a little bit tired, but not significantly. It certainly isn't stopping me doing anything and Greg is helping with the long drive (45 mins to work in the morning, 1.5 hours from Gloucester to Cardiff in the afternoon, and 45 mins home again - occasionally with an extra trip to and from Bristol thrown in for good measure).
The nurses are really lovely and we have a chat and a joke each time I go, and I'm getting better at getting into position correctly without too much need for them to adjust me, now.
If you're interested in seeing how it all works, I have found the video below which shows you (click on the picture to play):
Otherwise life is ticking along nicely. My hair is slowly getting thicker - Greg tells me that every day it looks a little darker, although it seems a lot more grey than it was before! It still isn't thick enough to go wig or hatless, but it won't be too long before I do.
It feels like my eyebrows and eyelashes have thinned slightly more, and quite a few of my fingernails are trying to escape - 4 have lifted from the nail bed, but only the top half of the nail has separated, so they are all in place and it looks like they will just grow out. I am covering their slightly strange look with dark nail varnish! This is a side effect of the chemo, delayed due to the slow growth of the nails.
I also have some itchy patches on my arms and neck, so will mention that when I go to the GP's on Thursday. It might be a side effect of the Tamoxifen (or maybe the Herceptin), or it might be entirely unrelated! Who knows.
Nearly at the end of the major treatments now. Will find out what happens next when I see Dr Iqbal in June.
I have now had 10 of my 15 radiotherapy treatments and all is going well. I have a square of 'tan' where my boob used to be, and my shoulder is slightly red, but at the moment it is not sore - just a little itchy occasionally. I'm feeling a little bit tired, but not significantly. It certainly isn't stopping me doing anything and Greg is helping with the long drive (45 mins to work in the morning, 1.5 hours from Gloucester to Cardiff in the afternoon, and 45 mins home again - occasionally with an extra trip to and from Bristol thrown in for good measure).
The nurses are really lovely and we have a chat and a joke each time I go, and I'm getting better at getting into position correctly without too much need for them to adjust me, now.
If you're interested in seeing how it all works, I have found the video below which shows you (click on the picture to play):
Otherwise life is ticking along nicely. My hair is slowly getting thicker - Greg tells me that every day it looks a little darker, although it seems a lot more grey than it was before! It still isn't thick enough to go wig or hatless, but it won't be too long before I do.
It feels like my eyebrows and eyelashes have thinned slightly more, and quite a few of my fingernails are trying to escape - 4 have lifted from the nail bed, but only the top half of the nail has separated, so they are all in place and it looks like they will just grow out. I am covering their slightly strange look with dark nail varnish! This is a side effect of the chemo, delayed due to the slow growth of the nails.
I also have some itchy patches on my arms and neck, so will mention that when I go to the GP's on Thursday. It might be a side effect of the Tamoxifen (or maybe the Herceptin), or it might be entirely unrelated! Who knows.
Nearly at the end of the major treatments now. Will find out what happens next when I see Dr Iqbal in June.
Tuesday, May 4, 2010
Rads #1 done. 14 to go...
My first radiotherapy session went well today. The staff were very friendly, as always, and we had a chat about what was going to happen and tips about skin care before I was taken to the machine. I asked about what the planning session does, and the radiographer showed me an image from my CT scan. They use the scan to identify the edges of the breast tissue to make sure that the radiotherapy targets all of the former boob area, and also the neck area to get any remaining lymph nodes.
When they deliver it, you lay on the bed and the machine moves above your head and to your side. You have your arms above your head, but held in arm holders and they wiggle you into position to make sure that you are positioned absolutely correctly. I could see the lasers they use to line you up reflected in the metal of the radiation arm!
Apparently, I can expect to get a couple of 'sunburn' squares on my chest, and tiredness, but apparently most people don't get these until at least the third week.
Today took about 40 minutes in all, but tomorrow should be much quicker now that all the forms have been signed and information given. In, zap, out.
Oh, and the work conference? I'm not really sure I got the point of it....
When they deliver it, you lay on the bed and the machine moves above your head and to your side. You have your arms above your head, but held in arm holders and they wiggle you into position to make sure that you are positioned absolutely correctly. I could see the lasers they use to line you up reflected in the metal of the radiation arm!
Apparently, I can expect to get a couple of 'sunburn' squares on my chest, and tiredness, but apparently most people don't get these until at least the third week.
Today took about 40 minutes in all, but tomorrow should be much quicker now that all the forms have been signed and information given. In, zap, out.
Oh, and the work conference? I'm not really sure I got the point of it....
Monday, May 3, 2010
The day before I go nuclear
It's nearly time for the radiotherapy to begin - tomorrow at 5pm. Eek. I am sure it will be a non-event, but I am also sure that I will be slightly anxious tonight and won't quite sleep properly.
Before I go there tomorrow, there is a conference at work for all of us over a certain grade. We have to bring an object that demonstrates how we feel about the university now, and how we want to see it in the future (the conference is titled "Future Focus"). I think some people are planning on bringing in joke dog poo for the former... I have not worked there long enough yet to be so cynical, and think the staff there are very lucky to be employed by them. I see it is more paternal - and in the future it'll be a slightly thinner father!! How do I take in that as an object? !!
This week, I had my latest Zoladex injection and BOY did it hurt! Admittedly, it is only sore for a short while, but it was certainly sore. I'm now having it every 3 months, which means the needle is bigger and leaves a hole behind. The nurse patches it with a plaster, but there is always a spot of blood leaking through... I now just have a slight bruise.
I have now made it to the end of my first box of Tamoxifen, and can say that the side effects of that are: sweatier nights (and therefore more disturbed as I am hot one minute, cold the next - bigger extremes than before), and an itchy rash that came up on my neck last weekend. It stayed for a couple of days, then calmed down, and is back today although not as itchy as it was originally. I think it is the Tamoxifen causing it - some others on the cancer forum think so. I'll keep an eye on it.
I am also very impressed by the nurse at the GP's surgery. I went in for my Zoladex and also asked for them to add the Tamoxifen on a repeat script. I had only just thought about this as I was coming to the end of the box I got from the hospital, and realised I'm not going to be seeing the oncologist again until the beginning of June! Even though they haven't had a letter from him asking them to prescribe it, she took my word for it (and I produced my copy of the original hospital script), added it to my file and gave me 6 months prescription. They get held at the pharmacy and you just pop along and collect the next box when you are ready - this makes sure there isn't any waste, should you have a bad reaction and get taken off them.
I'll be back at the doctors in two weeks time, this time to look at contraception. At risk of sharing too much, but I had obviously come off the pill a while ago to try for babies. I am now not allowed to get pregnant for a while (and certainly not while still having herceptin or radiotherapy treatment), so we need to use some precaution. It is not advised that you have any contraception that contains hormones, especially as my cancer was responsive to both oestrogen and progesterone.
o The pill - hormones = no.
o Implant - hormones = no.
o Mirena coil - hormones = no.
o Diaphragm - fiddly = no.
o Condoms - fiddly and desensitising = no.
o Copper coil/IUD - no hormones = yes.
I have to have a chat with the doctor before she'll fit it, but seeing as the usual side effects of a coil are heavy periods, and I have none at all at the moment, then it should be straightforward (I hope!). Such excitement to look forward to [emma rolls her eyes!].
Righto, I'm off now to Charlotte's to celebrate her birthday, so I'd better put my face on and wrap her present!
Will try and wrestle the laptop off Greg tomorrow and update on how the first rads sessions goes.
Before I go there tomorrow, there is a conference at work for all of us over a certain grade. We have to bring an object that demonstrates how we feel about the university now, and how we want to see it in the future (the conference is titled "Future Focus"). I think some people are planning on bringing in joke dog poo for the former... I have not worked there long enough yet to be so cynical, and think the staff there are very lucky to be employed by them. I see it is more paternal - and in the future it'll be a slightly thinner father!! How do I take in that as an object? !!
This week, I had my latest Zoladex injection and BOY did it hurt! Admittedly, it is only sore for a short while, but it was certainly sore. I'm now having it every 3 months, which means the needle is bigger and leaves a hole behind. The nurse patches it with a plaster, but there is always a spot of blood leaking through... I now just have a slight bruise.
I have now made it to the end of my first box of Tamoxifen, and can say that the side effects of that are: sweatier nights (and therefore more disturbed as I am hot one minute, cold the next - bigger extremes than before), and an itchy rash that came up on my neck last weekend. It stayed for a couple of days, then calmed down, and is back today although not as itchy as it was originally. I think it is the Tamoxifen causing it - some others on the cancer forum think so. I'll keep an eye on it.
I am also very impressed by the nurse at the GP's surgery. I went in for my Zoladex and also asked for them to add the Tamoxifen on a repeat script. I had only just thought about this as I was coming to the end of the box I got from the hospital, and realised I'm not going to be seeing the oncologist again until the beginning of June! Even though they haven't had a letter from him asking them to prescribe it, she took my word for it (and I produced my copy of the original hospital script), added it to my file and gave me 6 months prescription. They get held at the pharmacy and you just pop along and collect the next box when you are ready - this makes sure there isn't any waste, should you have a bad reaction and get taken off them.
I'll be back at the doctors in two weeks time, this time to look at contraception. At risk of sharing too much, but I had obviously come off the pill a while ago to try for babies. I am now not allowed to get pregnant for a while (and certainly not while still having herceptin or radiotherapy treatment), so we need to use some precaution. It is not advised that you have any contraception that contains hormones, especially as my cancer was responsive to both oestrogen and progesterone.
o The pill - hormones = no.
o Implant - hormones = no.
o Mirena coil - hormones = no.
o Diaphragm - fiddly = no.
o Condoms - fiddly and desensitising = no.
o Copper coil/IUD - no hormones = yes.
I have to have a chat with the doctor before she'll fit it, but seeing as the usual side effects of a coil are heavy periods, and I have none at all at the moment, then it should be straightforward (I hope!). Such excitement to look forward to [emma rolls her eyes!].
Righto, I'm off now to Charlotte's to celebrate her birthday, so I'd better put my face on and wrap her present!
Will try and wrestle the laptop off Greg tomorrow and update on how the first rads sessions goes.
Tuesday, April 13, 2010
Tattooed and ready to go
I've been nudged to update as I haven't posted in a while - sorry, been busy with work and partying and being lazy!
I have now been tattooed ready for my radiotherapy. Met with Dr Iqbal who ran through a few things about the treatment - basically just the consent form, including a laissez-faire mention of "it can cause lung damage and future cancers". Then I was whisked through to the machine and the nurses/technicians who drew all over me, then gave me the tattoos. They are the smallest things possible, no bigger than the full stop on this page, if even that. There is one in the centre of my chest on the bra strap line, and one on each side under my arms - I can't see those! They add the ink, then there is a tiny scratch and its all done.
With the various markings on, you are then put through a CT scanner with your arms above your head, and they will use the scan results to decide where to target. I shall ask more about what they see on the scan when I go next time... are they looking for stray cancer cells?? Lymph nodes?
I asked for appointments as late in the day as possible, and called this week to find out what was happening as I hadn't heard, and it seems they have made most of the appointments for 5pm or 5.30pm, except for a couple where you have to have a review appointment. I still haven't had the letter confirming all this though. It will start on 4th May, which is a little later than I expected, but hey ho.
On other stuff, I have been very well since the last chemo until yesterday when I got a cold - but I don't have a temperature and it is the first cough/cold I have had since I started all this 5 months ago, so it is just one of those things.
We had a small post-chemo party last saturday, which happened to coincide with the Grand National, so that was our theme. I went as Red Marauder (winner 2001), Greg was Flintoff (a runner that day), Marcus was Becher's Brook, Charlotte was a race goer on Ladies Day, Penny was a jockey, Theo was a horse, Hannah and Patrick were Team Spirit (1964 winner), Katie and the other Charlotte were both Black Beauty, Luke was Royal Athlete (1995 winner) and Jamie was.... Buzz Lightyear! He's only 3, and is obsessed, bless!! It was all good fun - we have eaten nothing but leftovers since!
I started my Tamoxifen just over a week ago, and the only side effect seems to be a slight loss of appetite on occasion (although I have lost no overall weight, even though my body fat % is down...) so, just getting on with life and work until 4th May now.
If I don't report back for a while, its cos nothing has changed, I promise!! xxxx
I have now been tattooed ready for my radiotherapy. Met with Dr Iqbal who ran through a few things about the treatment - basically just the consent form, including a laissez-faire mention of "it can cause lung damage and future cancers"
With the various markings on, you are then put through a CT scanner with your arms above your head, and they will use the scan results to decide where to target. I shall ask more about what they see on the scan when I go next time... are they looking for stray cancer cells?? Lymph nodes?
I asked for appointments as late in the day as possible, and called this week to find out what was happening as I hadn't heard, and it seems they have made most of the appointments for 5pm or 5.30pm, except for a couple where you have to have a review appointment. I still haven't had the letter confirming all this though. It will start on 4th May, which is a little later than I expected, but hey ho.
On other stuff, I have been very well since the last chemo until yesterday when I got a cold - but I don't have a temperature and it is the first cough/cold I have had since I started all this 5 months ago, so it is just one of those things.
We had a small post-chemo party last saturday, which happened to coincide with the Grand National, so that was our theme. I went as Red Marauder (winner 2001), Greg was Flintoff (a runner that day), Marcus was Becher's Brook, Charlotte was a race goer on Ladies Day, Penny was a jockey, Theo was a horse, Hannah and Patrick were Team Spirit (1964 winner), Katie and the other Charlotte were both Black Beauty, Luke was Royal Athlete (1995 winner) and Jamie was.... Buzz Lightyear! He's only 3, and is obsessed, bless!! It was all good fun - we have eaten nothing but leftovers since!
I started my Tamoxifen just over a week ago, and the only side effect seems to be a slight loss of appetite on occasion (although I have lost no overall weight, even though my body fat % is down...) so, just getting on with life and work until 4th May now.
If I don't report back for a while, its cos nothing has changed, I promise!! xxxx
Monday, March 29, 2010
Cupcakes and chemo
A post (which I may or may not update as the week goes on, we shall see!), to let you know that I am fine after my last chemo on Friday.
I had herceptin at the same time as the chemo - well, just before it - half an hour to infuse the herceptin, half an hour observation (the last time they have to do that, apparently), then an hour to give the taxotere chemo. Then I was done!!! No problems getting a vein, and the cup cakes I bought the nurses seemed to go down well!!
On Friday, we went out for a meal with Luke and his girlfriend (just a quiet night out for pizza, none of us were drinking), and then on Saturday we were up with the larks to meet Greg's uncle in a cafe in Tiverton for breakfast. We got there for 8.15am, and had a lovely cooked brekkie when they finally opened at 8.30am!!
After that, straight on down to Exeter to see G's dad (Pete) - it was his 74th birthday and he is still motoring on pretty darn well!! G had bought him a telescope, which he had always wanted, so he was quite chuffed with that. After present opening, Pete had to go to his allotment as his mates wanted to celebrate his birthday with him, so I got them to drop me off in town so I could peruse the local wig shop. I'm looking for something shorter, with a fringe, to help me through re-growth... I tried a few on, but they all make me look at least 50 years old, so I decided against and bought two new lighter hats instead.
Later in the evening, we went out for a chinese meal where G's mum joined us, and then on Sunday we pootled home and stopped off at H&P's house to celebrate Jamie's 3rd birthday. It was lovely to be able to catch up with so many people!
I've felt pretty much fine throughout - a little indigestion on Saturday, and this morning (Monday) I feel a little slow and woozy, but I am not planning on doing anything much, except potter, so it should all be good.
Will update if anything happens, and will definitely post again once I've had my radiotherapy planning sesh!
Tuesday, March 23, 2010
Final chemo clinic - done
Today was the last pre-chemo clinic and blood test I will have to do. I am so relieved, and keep crying as a result!
My bloods were super-high (9 point something, which is due to the neulasta) and Dr Iqbal said I had done really well. I've got through all 8 treatments without any delays, and only one 'scare' and I have carried on going to work throughout. I think that is pretty good. So far, I will have clocked up only about 6 days off due to feeling unwell post-chemo. I know it isn't a competition, but I am still pleased my body helped me through so well.
I now know that my radiotherapy planning will be done on 1st April and I will start taking Tamoxifen on that day too.
The radiotherapy planning is where you are measured up and tattooed prior to the actually radiotherapy starting. I forgot to ask when it would actually start (doh!) but I can ask that next week. The tattoos, as far as I am aware, are like a freckle, so they are noticeable but hopefully not obtrusive. This ensures that they zap you in the exact right place everytime and it is much quicker in and out for each appointment. The treatments were confirmed as being just 15 (every week day for 3 weeks), so that is great. I've been reading about people going through this, and many seem to feel tired towards the end or just afterwards, and/or get a slight 'sunburn' to the area being treated. Many come through it without any side effects worth mentioning and work and drive all the way through. Of course, the latter is what I am hoping for.
Tamoxifen seems to give people the same side effects that I am already getting from the Zoladex - hot flushes, dryness, periods stop, tummy weight gain - so I am hoping it won't make a lot of difference to me. As I say, I already have all of that and am coping!
The most annoying thing today was that I was all ready to go to a meeting down at Frenchay this afternoon, and because clinic was running behind and I had to collect my steroids from the pharmacy I was running late. So I called work to let them know, and found that the meeting was actually held this morning! Whoops! Not sure if I had missed an update, or if I hadn't been told! I wouldn't have been able to go this morning, so it is just as well I phoned in as I have saved myself a trip to Bristol in the rain. The only problem is, I am now supposed to be working from home and my head is simply not in the right place to do it. But then, last month (ignoring days off sick or on holiday), I managed to clock in 10 hours above and beyond what I have to do, so if today is a bit of a write-off, I don't think it matters immensely.
Dr Iqbal wanted me to have the radiotherapy planning this Thursday, but I have arranged for 'Focus Groups' with staff and students at the college, to find out what they think of the library service, so I really didn't want to have to cancel that or leave it to the rest of the team to deliver, so he reluctantly agreed that next week would be fine. I seriously had not been expecting him to give me an appointment for 2 days time, so he caught me off guard!!
Next week, I am on holiday - including this friday and this weekend, it will be a total of 12 days off work, so I am looking forward to that and am happy to fit any appointments in then! I know I will feel a bit rubbish for some of it, but I won't be thinking or worrying about work at all, and I do need a break from that. Even I can acknowledge that!
You'll also be pleased to know that I am feeling much brighter than I was the other day. Diet changes are already having an impact, I am certain. Although I am struggling to get off to sleep, but that is mainly because I am anticipating Friday's chemo - this seems to happen quite often during the week before chemo.
Oh, and my hair is probably a couple of centimetres long now! It sounds a lot, but it is still far too thin (especially on the very top and front) to be on display out and about, but it is nice and soft and after this chemo, will hopefully come back in earnest. Just in time for summer sunshine, we hope!!!
My bloods were super-high (9 point something, which is due to the neulasta) and Dr Iqbal said I had done really well. I've got through all 8 treatments without any delays, and only one 'scare' and I have carried on going to work throughout. I think that is pretty good. So far, I will have clocked up only about 6 days off due to feeling unwell post-chemo. I know it isn't a competition, but I am still pleased my body helped me through so well.
I now know that my radiotherapy planning will be done on 1st April and I will start taking Tamoxifen on that day too.
The radiotherapy planning is where you are measured up and tattooed prior to the actually radiotherapy starting. I forgot to ask when it would actually start (doh!) but I can ask that next week. The tattoos, as far as I am aware, are like a freckle, so they are noticeable but hopefully not obtrusive. This ensures that they zap you in the exact right place everytime and it is much quicker in and out for each appointment. The treatments were confirmed as being just 15 (every week day for 3 weeks), so that is great. I've been reading about people going through this, and many seem to feel tired towards the end or just afterwards, and/or get a slight 'sunburn' to the area being treated. Many come through it without any side effects worth mentioning and work and drive all the way through. Of course, the latter is what I am hoping for.
Tamoxifen seems to give people the same side effects that I am already getting from the Zoladex - hot flushes, dryness, periods stop, tummy weight gain - so I am hoping it won't make a lot of difference to me. As I say, I already have all of that and am coping!
The most annoying thing today was that I was all ready to go to a meeting down at Frenchay this afternoon, and because clinic was running behind and I had to collect my steroids from the pharmacy I was running late. So I called work to let them know, and found that the meeting was actually held this morning! Whoops! Not sure if I had missed an update, or if I hadn't been told! I wouldn't have been able to go this morning, so it is just as well I phoned in as I have saved myself a trip to Bristol in the rain. The only problem is, I am now supposed to be working from home and my head is simply not in the right place to do it. But then, last month (ignoring days off sick or on holiday), I managed to clock in 10 hours above and beyond what I have to do, so if today is a bit of a write-off, I don't think it matters immensely.
Dr Iqbal wanted me to have the radiotherapy planning this Thursday, but I have arranged for 'Focus Groups' with staff and students at the college, to find out what they think of the library service, so I really didn't want to have to cancel that or leave it to the rest of the team to deliver, so he reluctantly agreed that next week would be fine. I seriously had not been expecting him to give me an appointment for 2 days time, so he caught me off guard!!
Next week, I am on holiday - including this friday and this weekend, it will be a total of 12 days off work, so I am looking forward to that and am happy to fit any appointments in then! I know I will feel a bit rubbish for some of it, but I won't be thinking or worrying about work at all, and I do need a break from that. Even I can acknowledge that!
You'll also be pleased to know that I am feeling much brighter than I was the other day. Diet changes are already having an impact, I am certain. Although I am struggling to get off to sleep, but that is mainly because I am anticipating Friday's chemo - this seems to happen quite often during the week before chemo.
Oh, and my hair is probably a couple of centimetres long now! It sounds a lot, but it is still far too thin (especially on the very top and front) to be on display out and about, but it is nice and soft and after this chemo, will hopefully come back in earnest. Just in time for summer sunshine, we hope!!!
Sunday, March 21, 2010
Low energy
I am feeling very, very sad today.
One of the ladies on the breast cancer forum I chat on, one who had created a kerfuffle when she posted that her Mastectomy was a 'doddle', has died. She was my age, had a different (more aggressive) breast cancer than me, had the same chemo regime as me, but with mastectomy after the chemo (this is quite common), and shortly after her operation found she had secondary cancers, specifically, in her brain. (FYI: secondaries are breast cancer cells that have spread - it is possible to get another primary cancer which would be entirely unrelated to your original breast cancer)
I spoke about her before in my blog: here and here.
She got pneumonia and was hospitalized on Wednesday. On Friday, she died. Just two months after her secondary cancer diagnosis.
I am also struggling a little bit today as I feel very tired and my eyes are playing up. They feel sore, so I have probably got a tiny bit of face cream in them, which means they are streaming and that in turn makes my eyelids feel sore and puffy, so I generally feel a bit crap. I had been feeling tired on Thursday and had a slightly raised temperature, but this seemed to get better. Then on Friday, I didn't help by going out and having lots of beers with Luke & Greg. We had a laugh, but I have been paying the price of a hangover since then!
I also think that our new diet (which we have only been following for a week) is not helping. The idea was that we would have a bigger lunch and a smaller evening meal. I knew I would struggle to have a bigger lunch as I have no time or inclination to eat a big meal in the day when I am at work. So I had my usual kinds of lunches - soup, sandwich, those Innocent Veg Pots, fruit, yoghurt. And then evening meals this week were things like beans on toast, scrambled egg, tuna sandwich. In essence, I just don't feel like I have been eating properly at all and as a result, my energy levels are struggling.
So I am starting again today and have had fruit, yoghurt and peppermint tea for breakfast, and will have a salad for lunch. I've made a list of meals from my 'Superfoods' book and hope to have the energy to prepare them. Greg and I both suffer from low energy after a day at work, so neither of us wants to cook. We are lazy sods really.
I just feel so different to how I felt at the beginning of this week. I started a beginner running programme last Sunday (run 1 minute, walk 90 seconds, x 8) and tried to do it this morning, but only managed half at a very slow speed. Here's hoping my energy comes back when I start eating properly again. And no more drink!
One of the ladies on the breast cancer forum I chat on, one who had created a kerfuffle when she posted that her Mastectomy was a 'doddle', has died. She was my age, had a different (more aggressive) breast cancer than me, had the same chemo regime as me, but with mastectomy after the chemo (this is quite common), and shortly after her operation found she had secondary cancers, specifically, in her brain. (FYI: secondaries are breast cancer cells that have spread - it is possible to get another primary cancer which would be entirely unrelated to your original breast cancer)
I spoke about her before in my blog: here and here.
She got pneumonia and was hospitalized on Wednesday. On Friday, she died. Just two months after her secondary cancer diagnosis.
I am also struggling a little bit today as I feel very tired and my eyes are playing up. They feel sore, so I have probably got a tiny bit of face cream in them, which means they are streaming and that in turn makes my eyelids feel sore and puffy, so I generally feel a bit crap. I had been feeling tired on Thursday and had a slightly raised temperature, but this seemed to get better. Then on Friday, I didn't help by going out and having lots of beers with Luke & Greg. We had a laugh, but I have been paying the price of a hangover since then!
I also think that our new diet (which we have only been following for a week) is not helping. The idea was that we would have a bigger lunch and a smaller evening meal. I knew I would struggle to have a bigger lunch as I have no time or inclination to eat a big meal in the day when I am at work. So I had my usual kinds of lunches - soup, sandwich, those Innocent Veg Pots, fruit, yoghurt. And then evening meals this week were things like beans on toast, scrambled egg, tuna sandwich. In essence, I just don't feel like I have been eating properly at all and as a result, my energy levels are struggling.
So I am starting again today and have had fruit, yoghurt and peppermint tea for breakfast, and will have a salad for lunch. I've made a list of meals from my 'Superfoods' book and hope to have the energy to prepare them. Greg and I both suffer from low energy after a day at work, so neither of us wants to cook. We are lazy sods really.
I just feel so different to how I felt at the beginning of this week. I started a beginner running programme last Sunday (run 1 minute, walk 90 seconds, x 8) and tried to do it this morning, but only managed half at a very slow speed. Here's hoping my energy comes back when I start eating properly again. And no more drink!
Wednesday, March 17, 2010
Genetic testing
I've been back down to The Heath in Cardiff today to see the Medical Genetics team to discuss testing to see whether I have either of the two gene abnormalities that have so far been identified as increasing the risk of breast (and ovarian) cancer. These are called BRCA1 and BRCA2 (literally BReast CAncer 1 and 2).
We went through my family history and agreed that me, mum and gran all having breast cancer does put me into the 'high risk' category. There are 3 categories:
- High, means that you will be offered annual screening between the ages of 35-50, reducing to every 18 months after that.
- Moderate risk, means screening starts at 40, and
- Normal means you join the usual national screening programme at 50.
The counsellor explained basic genetics to me. We each carry pairs of genes and inherit one from each parent. So if my mum (for instance) had one 'good' BRCA gene and one 'abnormal' one, I have a 50% chance of inheriting the bad one. So does my brother. I'd inherit the other one of my pair from my dad, but as there is not any massive history of any cancers on that side of the family, the likelihood it has come down that path is too low to worry about.
So I have agreed to be tested, as I would like to know in order to help me make decisions - in particular, whether to have a 'prophylactic' (or elective, risk-reducing, preventative) mastectomy on my healthy boob when I go for reconstruction.
Being identified as having one of these genes means that your lifetime risk of getting breast cancer is 50-80%, and of getting ovarian cancer, 10-40%. This is versus the 'normal' risk in the population of getting breast cancer of 10-11% and ovarian cancer of 1-2%. So it is a significant increase, but still not an absolute.
Having a mastectomy (or having your ovaries removed, called an oopherectomy) significantly reduces the likelihood of developing it in the future, but does not elimiate the risk entirely.
If we find I don't have the gene, it is highly unlikely that my brother carries it either. It is much more likely that me, the one wot has had breast cancer, would be a carrier than someone who hasn't had any cancers. However, if I do have a gene, he could also have it and will need to keep a closer eye for prostate cancer, and his daughters, my neices, will fall into the 'moderate risk' category and could be eligible for additional screening. But lets not worry about that too much as they are young, breast cancer is an adult on-set disease, and science will have improved a lot by the time they are at potential risk.
The other thing that has crossed my mind, when thinking about this in the past, is that if I did have the gene, would it make me reconsider becoming a mum. Maybe. I would have to really think about it. But I suspect I would go ahead as, as the counsellor pointed out, science will be a long way ahead by the time they are 'at risk'.
So, I am going to have blood taken as part of my routine appointment next Tuesday so I have a form to ask them to take more for the genetic testing at the same time. It takes 3-6 months for the testing to be completed (it is a little more complex than a routine test!) and when the results are in, I'll be invited back to discuss them. Keep everything crossed that me, mum and gran have just been 'unlucky' and that this thing doesn't having ongoing repercussions for the whole family...
We went through my family history and agreed that me, mum and gran all having breast cancer does put me into the 'high risk' category. There are 3 categories:
- High, means that you will be offered annual screening between the ages of 35-50, reducing to every 18 months after that.
- Moderate risk, means screening starts at 40, and
- Normal means you join the usual national screening programme at 50.
The counsellor explained basic genetics to me. We each carry pairs of genes and inherit one from each parent. So if my mum (for instance) had one 'good' BRCA gene and one 'abnormal' one, I have a 50% chance of inheriting the bad one. So does my brother. I'd inherit the other one of my pair from my dad, but as there is not any massive history of any cancers on that side of the family, the likelihood it has come down that path is too low to worry about.
So I have agreed to be tested, as I would like to know in order to help me make decisions - in particular, whether to have a 'prophylactic' (or elective, risk-reducing, preventative) mastectomy on my healthy boob when I go for reconstruction.
Being identified as having one of these genes means that your lifetime risk of getting breast cancer is 50-80%, and of getting ovarian cancer, 10-40%. This is versus the 'normal' risk in the population of getting breast cancer of 10-11% and ovarian cancer of 1-2%. So it is a significant increase, but still not an absolute.
Having a mastectomy (or having your ovaries removed, called an oopherectomy) significantly reduces the likelihood of developing it in the future, but does not elimiate the risk entirely.
If we find I don't have the gene, it is highly unlikely that my brother carries it either. It is much more likely that me, the one wot has had breast cancer, would be a carrier than someone who hasn't had any cancers. However, if I do have a gene, he could also have it and will need to keep a closer eye for prostate cancer, and his daughters, my neices, will fall into the 'moderate risk' category and could be eligible for additional screening. But lets not worry about that too much as they are young, breast cancer is an adult on-set disease, and science will have improved a lot by the time they are at potential risk.
The other thing that has crossed my mind, when thinking about this in the past, is that if I did have the gene, would it make me reconsider becoming a mum. Maybe. I would have to really think about it. But I suspect I would go ahead as, as the counsellor pointed out, science will be a long way ahead by the time they are 'at risk'.
So, I am going to have blood taken as part of my routine appointment next Tuesday so I have a form to ask them to take more for the genetic testing at the same time. It takes 3-6 months for the testing to be completed (it is a little more complex than a routine test!) and when the results are in, I'll be invited back to discuss them. Keep everything crossed that me, mum and gran have just been 'unlucky' and that this thing doesn't having ongoing repercussions for the whole family...
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