A few weeks ago I received a message in my Facebook inbox asking me to help raise awareness for breast cancer. This was a few days after my diagnosis, so I was feeling pretty raw at the time and did nor respond, but now I feel I must, but it made me angry. This is probably not the most coherant argument against these things you'll find on the internet, but I need to get it off my chest, so to speak.
Most of the ladies I know will have received something the same or similar in their email inboxes, maybe the gentlemen have too, I don't know. You see similar stuff happening on twitter - make #xyz trend to raise money for something or other. My immediate question to all of these has been: How? How will retweeting a hashtag raise money? How will posting an iniane status, designed to "confuse the men" (really?!?) will raise awareness of breast cancer.
Most people are pretty aware of breast cancer. I don't think people need to be made aware of something that affects 1 in 8 women in the UK.
The key about breast cancer awareness is being able to notice something abnormal in your breast and going to see your doctor about it straight away. The being able to notice is especially key. Since my mothers cancer diagnosis 3 years ago, I've been pretty vigilant about checking my breast for abnormalities. The problem is that I didn't know what I was looking for, and so when I found the lump it was already 3cm across - I'm only a B cup, so that's a pretty significant chunk of volume. I was checking, but I didn't find. It may have cost me my life - I don't want it to cost any one elses. My cancer has (it appears) only just switched from pre-cancer to cancer. If I'd've found my lump 6 months ago, I might have saved myself chemotherapy, and given myself a much better prognosis. Hopefully I have found it soon enough - only time will tell.
A secondary point about "confusing the blokes" - men need to be just as aware as women - they may notice a change in their partners breast as well - after all they spend more time with them, and may have more points of reference to refer back to, so guys you need to be aware as well.
So, to all my friends I say this: instead of posting an inane status on facebook or retweeting something usless, post this instead:
http://www.breastcancercare.org.uk/breast-cancer-breast-health/breast-awareness/
Also, click on the link, read it, watch the video and check yourselves or your partner. You never know, you might save someone's life.
If you feel passionatly about something, do something useful - sprea information rather than mis-information or donate rather than posture.
Thanks for your time, and sorry if it sounds like a rant - I've tried to restrain myself ;).
Saturday 27 August 2011
Thursday 25 August 2011
9 days Out
I've been at my parents house since the weekend, suffering from a lack of laptop and a flaky interweb connection. Still it's given me the chance to relax and become almost surgically attached to my Kindle (started reading A Song of Ice and Fire series following watching the first 2 episodes of Game of Thrones - I'm still two episodes into the series, but halfway through the second book. If any one has any good book recommendations let me know).
Physically I feel pretty good, the sickness feeling has past as have most of the headaches (although they were mild). I'm feeling tired though, but I am sleeping quite well - some days I have a nap but most days I resist. Technically however, the next few days I'm the most ill - it kills white blood cells as well as cancer cells, and statistically the next few days my immune system is at it's weakest point it takes about 10 days for the white blood cells to die off as they're not being replaced by my bone marrow at the moment as I understand it. The bone marrow should start to recover over the next few days and then the white blood cells will come flooding back - which needs to be tested before I can have my second dose of chemo. Emotionally I'm feeling a little strung out and delicate, but I suppose that's to be expected. I think I'm mourning for my youth.
My hair is not yet falling out, but this usually starts happening about 2-3 weeks, or sometimes longer after treatment.
I came back home last night with my Mum (Simon joined us in Essex for the weekend, but then had to go back to work) and today I'm off to hospital for another test. When they did the chest CT a few weeks back, it was noticed that there was some sort of abnormality on my ovaries. This is almost certainly due to an abnormality I am already aware of - I have PCOS - which is mostly harmless, but they don't want to take any chances and give the ovaries a good going over with the ultrasound to make sure there's nothing new and sinister going on there. I've had this done before, and its a fun test - they use your bladder a bit like a lens, so you have to drink 2 pints of water before you go in and not go to the loo. They then press the ultrasound wand into your belly for what seems like an eternity. Still compared to some of the tests I've had done to me recently, it should be a walk in the park.
I was also planning to get out in the garden and do some weeding to get a little exercise, but sadly today the good weather is broken and it is properly pissing it down outside. Maybe I'll wander up and down the stairs a bit instead - living in a 3 storey house is good for the heart. I'm considering taking up yoga - to do at home rather than a class to give me a little exercise and maybe a little inner peace.
Physically I feel pretty good, the sickness feeling has past as have most of the headaches (although they were mild). I'm feeling tired though, but I am sleeping quite well - some days I have a nap but most days I resist. Technically however, the next few days I'm the most ill - it kills white blood cells as well as cancer cells, and statistically the next few days my immune system is at it's weakest point it takes about 10 days for the white blood cells to die off as they're not being replaced by my bone marrow at the moment as I understand it. The bone marrow should start to recover over the next few days and then the white blood cells will come flooding back - which needs to be tested before I can have my second dose of chemo. Emotionally I'm feeling a little strung out and delicate, but I suppose that's to be expected. I think I'm mourning for my youth.
My hair is not yet falling out, but this usually starts happening about 2-3 weeks, or sometimes longer after treatment.
I came back home last night with my Mum (Simon joined us in Essex for the weekend, but then had to go back to work) and today I'm off to hospital for another test. When they did the chest CT a few weeks back, it was noticed that there was some sort of abnormality on my ovaries. This is almost certainly due to an abnormality I am already aware of - I have PCOS - which is mostly harmless, but they don't want to take any chances and give the ovaries a good going over with the ultrasound to make sure there's nothing new and sinister going on there. I've had this done before, and its a fun test - they use your bladder a bit like a lens, so you have to drink 2 pints of water before you go in and not go to the loo. They then press the ultrasound wand into your belly for what seems like an eternity. Still compared to some of the tests I've had done to me recently, it should be a walk in the park.
I was also planning to get out in the garden and do some weeding to get a little exercise, but sadly today the good weather is broken and it is properly pissing it down outside. Maybe I'll wander up and down the stairs a bit instead - living in a 3 storey house is good for the heart. I'm considering taking up yoga - to do at home rather than a class to give me a little exercise and maybe a little inner peace.
Thursday 18 August 2011
So Far, So Good
Nearly 48 hours in from my first lot of treatments, and I'm feeling pretty good. Yes, I'm quite nauseous, and tired, but nothing like as much as I was expecting - more like a general feeling of being a bit under the weather, rather than being all out ill. This bodes well as the reaction to the treatments is usually cumulative
I'm managing to keep the nausea largely under control at the moment with the drugs they've given me. I'm starting to come off the stronger ones though, so we'll see how I carry on. The worst reaction so far is to chilli - apparently my stomach lining doesn't like it any more. I think this is a side effect of the steroids though, which I only take for the first 4 days after treatment, so hopefully my stomach will recover towards the end of the cycles. It's mainly a problem because I'd estimate that 2/3 dishes that Simon and I cook regularly contain chilli.
Simon is able to work from home as required during treatment. He stayed at home yesterday but has gone back into the office today. It's great that he's able to be flexible. We managed a walk, but mostly I played computer games whilst he worked. I was hoping to do some work in the garden today, but its raining, and I am a fair weather gardener - at least at the moment, I think it's only fair!
I'm managing to keep the nausea largely under control at the moment with the drugs they've given me. I'm starting to come off the stronger ones though, so we'll see how I carry on. The worst reaction so far is to chilli - apparently my stomach lining doesn't like it any more. I think this is a side effect of the steroids though, which I only take for the first 4 days after treatment, so hopefully my stomach will recover towards the end of the cycles. It's mainly a problem because I'd estimate that 2/3 dishes that Simon and I cook regularly contain chilli.
Simon is able to work from home as required during treatment. He stayed at home yesterday but has gone back into the office today. It's great that he's able to be flexible. We managed a walk, but mostly I played computer games whilst he worked. I was hoping to do some work in the garden today, but its raining, and I am a fair weather gardener - at least at the moment, I think it's only fair!
Tuesday 16 August 2011
One Down...
First chemo session done. Nothing unexpected happened and I'm still feeling pretty OK - a little nauseous and a bit of a headache, but other than that I feel pretty good so far. I understand however that the drugs can take a few days to really hit you, so I'll just see how it goes from now.
I was booked in for 2pm, and we arrived a little early. I didn't need to see the doctor before the session, so that sped things up somewhat. First things first the chemo nurse took me through exactly what she'd be doing for this an further sessions. I'm pretty sure that part of the requirements for working anywhere near cancer patients is to be super nice.
She took my blood pressure (which was low, so I wasn't as stressed as I felt maybe), and then put a cannula in my had to administer the drugs. Saline goes in first to make certain they've hit the vein. If one of the drugs hits outside the vein it can kill the cells it touches - so they're constantly checking to make sure its in the vein correctly, and then that it hasn't shifted. I was given an anti sickness steroid to start with - which she warned me gave you a feeling like having ants in your pants. She was right - a very odd sensation, but thankfully it passed quickly. It also made me very dizzy - but again that's a common reaction.
I had the cold cap fitted to try and prevent hair loss, and it wasn't as uncomfortable as I'd worried about. In fact, given that the room was quite warm, it was almost pleasant. The hat has to go on 20 minutes before they administer the first chemo drug - which is also the one that causes the hair loss and the cell death (its a lovely substance). This has to be administered manually by the chemo nurse rather than through the drip because it's so dangerous - it gets mixed in with saline and slowly pumped in. I remember this one from my Mum's treatment - it's bright red. You don't really feel much as it goes in, just a coldness and slight tightness in your veins -- the drugs are refrigerated before going in so they're quite chilly, and this causes the veins to constrict. After that the drip was hooked up to two further drugs, each of which took about 15 minutes to infuse.
The cold cap gets replaces every once in a while - they're just cold packs fitted into a helmet shape - so quite a cunning solution, but they melt so have to be redone. I looked like a jockey apparently. I didn't let Simon take a photo.
The pharmacist came round as well and explained the drugs they give me for after the session. I have some steroids and other anti-sickness drugs to take over the next few days, and then some other anti sickness medicines to take after that if I need them. I also have a mouthwash to try and prevent mouth ulcers, as these are a common side effect, and I've suffered from them a lot in the past.
So I was in and out of the hospital in just over 2 hours, which isn't bad, and we now get free parking there, which is a small bonus. Got home and had a nice cup of tea and a relaxing read on the sofa. Simon and I have just been out for a short walk as well, which did make me feel a bit better, although it has made me feel distinctly warm - not helped by the fact that I've now got the laptop on me.
Physically so far so good. Mentally - I'm feeling a little delicate but it hasn't hit me like a tonne of brikes like I thought it would - at least not yet. I was pretty nervous before they started putting the drugs in but the nurses put me at ease. In both cases it's now just one step at a time. I am however very glad that I've now taken the first step.
I was booked in for 2pm, and we arrived a little early. I didn't need to see the doctor before the session, so that sped things up somewhat. First things first the chemo nurse took me through exactly what she'd be doing for this an further sessions. I'm pretty sure that part of the requirements for working anywhere near cancer patients is to be super nice.
She took my blood pressure (which was low, so I wasn't as stressed as I felt maybe), and then put a cannula in my had to administer the drugs. Saline goes in first to make certain they've hit the vein. If one of the drugs hits outside the vein it can kill the cells it touches - so they're constantly checking to make sure its in the vein correctly, and then that it hasn't shifted. I was given an anti sickness steroid to start with - which she warned me gave you a feeling like having ants in your pants. She was right - a very odd sensation, but thankfully it passed quickly. It also made me very dizzy - but again that's a common reaction.
I had the cold cap fitted to try and prevent hair loss, and it wasn't as uncomfortable as I'd worried about. In fact, given that the room was quite warm, it was almost pleasant. The hat has to go on 20 minutes before they administer the first chemo drug - which is also the one that causes the hair loss and the cell death (its a lovely substance). This has to be administered manually by the chemo nurse rather than through the drip because it's so dangerous - it gets mixed in with saline and slowly pumped in. I remember this one from my Mum's treatment - it's bright red. You don't really feel much as it goes in, just a coldness and slight tightness in your veins -- the drugs are refrigerated before going in so they're quite chilly, and this causes the veins to constrict. After that the drip was hooked up to two further drugs, each of which took about 15 minutes to infuse.
The cold cap gets replaces every once in a while - they're just cold packs fitted into a helmet shape - so quite a cunning solution, but they melt so have to be redone. I looked like a jockey apparently. I didn't let Simon take a photo.
The pharmacist came round as well and explained the drugs they give me for after the session. I have some steroids and other anti-sickness drugs to take over the next few days, and then some other anti sickness medicines to take after that if I need them. I also have a mouthwash to try and prevent mouth ulcers, as these are a common side effect, and I've suffered from them a lot in the past.
So I was in and out of the hospital in just over 2 hours, which isn't bad, and we now get free parking there, which is a small bonus. Got home and had a nice cup of tea and a relaxing read on the sofa. Simon and I have just been out for a short walk as well, which did make me feel a bit better, although it has made me feel distinctly warm - not helped by the fact that I've now got the laptop on me.
Physically so far so good. Mentally - I'm feeling a little delicate but it hasn't hit me like a tonne of brikes like I thought it would - at least not yet. I was pretty nervous before they started putting the drugs in but the nurses put me at ease. In both cases it's now just one step at a time. I am however very glad that I've now taken the first step.
The Calm Before the Storm
So here we are, my first chemo session starts in a few hours time. I'm both scared and looking forward to it, it will be nice to feel like I'm doing something towards getting better - even though I know it will make me feel worse. It's quite an odd feeling.
Bone scan last week went well - I won't get the results from that for probably another few days, but to a geek like me was a fascinating experience. First you're injected with a radioactive isotope (gamma ray emitter), you wait 3 hours (I went shopping as it was done at the hospital in the centre of Reading - bought myself a Kindle, which I'm already inseparable from). Then you go back and lie under a detector that picks up (and polarises using a lead mesh) the gamma rays, and counts how many are detected. In a similar way to X-Rays, the isotope is absorbed more or less by certain types of tissue - more by bone than flesh, and most of all by cancer cells. So they're looking for hot spots of gamma decay. It also gives you a semi live picture of your whole skeleton, which is very cool.
I've not been sleeping too well of late, but I did get a decent nights sleep last night thanks to having spent the day in London. The standard process for getting a wig through my hospital trust is overly complicated, so I decided to cut out the middleman and head to the supplier directly (sadly no cost reduction was forthcoming however). That meant a trip to Paddington, and I was accompanied by my good friend Haydn, who had the good grace to only laugh at me in one of the wigs I tried on. I've got a picture of me in a long wig - but not the one I chose. If I can figure out how, I'll post it up here.
The wig I've chosen is short and dark, and looks like one of the many haircuts I've had in the past. And unlike some others I tried on it didn't itch too much.
I also headed over to Covent Garden to meet another old friend, so all in all it was a good day. Especially as I had 2 ice creams bought for me ;).
Bone scan last week went well - I won't get the results from that for probably another few days, but to a geek like me was a fascinating experience. First you're injected with a radioactive isotope (gamma ray emitter), you wait 3 hours (I went shopping as it was done at the hospital in the centre of Reading - bought myself a Kindle, which I'm already inseparable from). Then you go back and lie under a detector that picks up (and polarises using a lead mesh) the gamma rays, and counts how many are detected. In a similar way to X-Rays, the isotope is absorbed more or less by certain types of tissue - more by bone than flesh, and most of all by cancer cells. So they're looking for hot spots of gamma decay. It also gives you a semi live picture of your whole skeleton, which is very cool.
I've not been sleeping too well of late, but I did get a decent nights sleep last night thanks to having spent the day in London. The standard process for getting a wig through my hospital trust is overly complicated, so I decided to cut out the middleman and head to the supplier directly (sadly no cost reduction was forthcoming however). That meant a trip to Paddington, and I was accompanied by my good friend Haydn, who had the good grace to only laugh at me in one of the wigs I tried on. I've got a picture of me in a long wig - but not the one I chose. If I can figure out how, I'll post it up here.
The wig I've chosen is short and dark, and looks like one of the many haircuts I've had in the past. And unlike some others I tried on it didn't itch too much.
I also headed over to Covent Garden to meet another old friend, so all in all it was a good day. Especially as I had 2 ice creams bought for me ;).
Wednesday 10 August 2011
5 days to go
The call from the chemotherapy suite came earlier than expected - I had a call this morning to confirm that I'll be starting my treatment on the 16th August - next Tuesday. So I have 5 more days of relative normality left. My last treatment will be (if everything goes according to plan) on the 10th Jan - 3 days before my birthday.
As far as I can tell, I should start to start feeling pretty normal again 2 weeks after that, so I should have another month of normality in Feb, depending on when the surgery is scheduled.
Before Tuesday I'll be going for my bone scan, Friday I'll be at work, on Saterday I'm going to Castle Coombe to watch some racing with some friends, and to a ball. Sunday is looking like a free day, and on Monday I'm planning on heading into London to find myself a wig. Anyone want to join me?
As far as I can tell, I should start to start feeling pretty normal again 2 weeks after that, so I should have another month of normality in Feb, depending on when the surgery is scheduled.
Before Tuesday I'll be going for my bone scan, Friday I'll be at work, on Saterday I'm going to Castle Coombe to watch some racing with some friends, and to a ball. Sunday is looking like a free day, and on Monday I'm planning on heading into London to find myself a wig. Anyone want to join me?
Tuesday 9 August 2011
The worst is the waiting
Back to the Parapet (Windsor Breast Care Clinic) today. Appointment was written on the card as 11am. Now I've started to get used to the concept of NHS time, which is apparently set up entirely differently from time in the rest of the observable universe, so I wasn't expecting to be seen at 11. I can understand why time drifts so much there, especially as the people I'm waiting to see are the principle deliverers of bad news to patients, so I can't complain about the wait - I totally understand why the delays happen, and the service received so far has been awesome. When there's an emergency, the NHS really do pull their socks up.
I can however complain about the chairs in the waiting room. I was waiting with my Mum, who unlike me has some serious back pain issues (and I mean serious). After 2 hours in the chairs my back was hurting. The chairs are evil. Maybe I can try and raise some money for better ones... hmm something to think about.
Anyway, at 1pm I was lead in to see the surgeon. The second lot of biopsies have found some invasive cancer cells - not many, but they are there in the samples, so no need for any more stabbings. The results are quite odd, but positive, it seems like I have quite a lot of pre cancerous cells and very few invasive cancer cells (based on what they have seen so far, until I have surgery, this is all best guess stuff), in small little pockets, so it seems slightly odd that it's reached my lymph nodes, but there you go. The cancer cells have been given as Grade 2 (out of 3, 1 being, mostly normal, slow growing, 2 is moderately weird, medium growth rate, 3 is very different to normal cells, fast growing) In a way its a good job that they found the cancer cells in the lymph nodes first otherwise I may have been treated as if I had a pre-cancerous condition, which could have lead to delays and additional surgeries. She had also received some further blood results from me that show that I don't have any ovarian or liver tumour markers (v good news). Also my breast cancer markers came up as normal - which may seem odd, but these don't deviate from normal unless there is 'a lot' of disease. So generally positive news, or at least, no more bad news.
A further hours wait (on slightly less uncomfortable chairs) before I met the oncologist, a nice chap called Dr Adams. He took me through the specifics of my chemo treatment, and took a general medical history (mostly PCOS, dodgy tummy, no gallbladder). So madame will be treated to 4 courses of FEC followed by 4 delicious courses of T (mmm tea). FEC seems to be the standard breast cancer chemo (5 Flourouracil, epirubicin and cyclophosphamide), and is what my Mum has 6 courses of. Standard symptoms: nausea, hair loss, itchy eyes, tiredness, dry skin and almost complete suppression of the immune system.
T (taxotere aka docetaxel) is a newer treatment, and often used for younger patients, as it delays any recurrence of cancer if there is going to be recurrence. So if I do get cancer again, it would likely be longer before it happened, hence why younger patients get it. It also works in a different way to the other drugs, so its a good belt and braces measure in case the FEC doesn't work so well. The side effects for this one are: more profound hair loss (e.g. you don't always lose your eyebrows with FEC, but are almost certain to with T), more fatigue, and more suppression of immune system but on the plus side, less nausea. It also causes weight gain and bloatiness, but this usually reverses at the end of treatment.
I don't yet know however, when this treatment will begin, but I should find out at the end of the week.
I can wear a cold cap to try and prevent hair loss, which I've agreed to try for the first few sessions, but it's not really something I'm that bothered about. Of more concern is the lack of immune system, so no visitors with colds allowed. Having said that, the oncologist recommended keeping as normal a life as possible - so I shouldn't stop going out shopping or to the theatre - but just take sensible measures to avoid coming into contact with infection. Also taking regular moderate exercise tends to alleviate symptoms and reduce the occurrence of infection. I've always planned to try and keep as active as possible during the treatment, but it's always nice to know that it's recommended. I went into the office yesterday, and will probably go back in another few days this week (although I'm having my bone scan on Thursday). It's nice to be around people and get out of the house, even if I'm not able to be super productive. I've also got a few projects I can dip in and out of through the treatment to keep my mind active as well. I'm hoping I don't get too bad a case of chemo-fog (my Mum described it during her treatment as 'a bit like having your.... you know...erm...brain...fall out of your ears' - it has since been recovered).
I then went and sat with Anne-Marie, my breast care nurse for a while, who was the one who talked me into trying the cold cap. She also went through the procedure for getting a wig (which seems overly complicated - NHS may be good at cancer, but they're still shit at procurement) and my Prescription Exemption Certificate - thanks to Gordon Brown, I get all my prescriptions free for the next 5 years, which is good. She also took me to see the chemo suite at the hospital, which was small, but similar to the suite I went to with my Mum (comfy chairs, pillows, lots of windows, flowers).
By the time we left it was 3pm. I hadn't had any breakfast. I need to keep a supply of food in my handbag from now on, just in case. We collected my Dad, who'd been planning of visiting his car nearby (the Cobra is poorly :( ), but ended up instead driving around Windsor. Dad judgement: more like Slough than what you'd expect of Windsor. Maybe he saw the wrong bits - I don't know, I've only ever driven though or been to the hospital. The bits around ythe castle (where we adjourned for lunch) were nice though. We bought fudge, which I then left in my Mums car, and they then went home - fail.
I can however complain about the chairs in the waiting room. I was waiting with my Mum, who unlike me has some serious back pain issues (and I mean serious). After 2 hours in the chairs my back was hurting. The chairs are evil. Maybe I can try and raise some money for better ones... hmm something to think about.
Anyway, at 1pm I was lead in to see the surgeon. The second lot of biopsies have found some invasive cancer cells - not many, but they are there in the samples, so no need for any more stabbings. The results are quite odd, but positive, it seems like I have quite a lot of pre cancerous cells and very few invasive cancer cells (based on what they have seen so far, until I have surgery, this is all best guess stuff), in small little pockets, so it seems slightly odd that it's reached my lymph nodes, but there you go. The cancer cells have been given as Grade 2 (out of 3, 1 being, mostly normal, slow growing, 2 is moderately weird, medium growth rate, 3 is very different to normal cells, fast growing) In a way its a good job that they found the cancer cells in the lymph nodes first otherwise I may have been treated as if I had a pre-cancerous condition, which could have lead to delays and additional surgeries. She had also received some further blood results from me that show that I don't have any ovarian or liver tumour markers (v good news). Also my breast cancer markers came up as normal - which may seem odd, but these don't deviate from normal unless there is 'a lot' of disease. So generally positive news, or at least, no more bad news.
A further hours wait (on slightly less uncomfortable chairs) before I met the oncologist, a nice chap called Dr Adams. He took me through the specifics of my chemo treatment, and took a general medical history (mostly PCOS, dodgy tummy, no gallbladder). So madame will be treated to 4 courses of FEC followed by 4 delicious courses of T (mmm tea). FEC seems to be the standard breast cancer chemo (5 Flourouracil, epirubicin and cyclophosphamide), and is what my Mum has 6 courses of. Standard symptoms: nausea, hair loss, itchy eyes, tiredness, dry skin and almost complete suppression of the immune system.
T (taxotere aka docetaxel) is a newer treatment, and often used for younger patients, as it delays any recurrence of cancer if there is going to be recurrence. So if I do get cancer again, it would likely be longer before it happened, hence why younger patients get it. It also works in a different way to the other drugs, so its a good belt and braces measure in case the FEC doesn't work so well. The side effects for this one are: more profound hair loss (e.g. you don't always lose your eyebrows with FEC, but are almost certain to with T), more fatigue, and more suppression of immune system but on the plus side, less nausea. It also causes weight gain and bloatiness, but this usually reverses at the end of treatment.
I don't yet know however, when this treatment will begin, but I should find out at the end of the week.
I can wear a cold cap to try and prevent hair loss, which I've agreed to try for the first few sessions, but it's not really something I'm that bothered about. Of more concern is the lack of immune system, so no visitors with colds allowed. Having said that, the oncologist recommended keeping as normal a life as possible - so I shouldn't stop going out shopping or to the theatre - but just take sensible measures to avoid coming into contact with infection. Also taking regular moderate exercise tends to alleviate symptoms and reduce the occurrence of infection. I've always planned to try and keep as active as possible during the treatment, but it's always nice to know that it's recommended. I went into the office yesterday, and will probably go back in another few days this week (although I'm having my bone scan on Thursday). It's nice to be around people and get out of the house, even if I'm not able to be super productive. I've also got a few projects I can dip in and out of through the treatment to keep my mind active as well. I'm hoping I don't get too bad a case of chemo-fog (my Mum described it during her treatment as 'a bit like having your.... you know...erm...brain...fall out of your ears' - it has since been recovered).
I then went and sat with Anne-Marie, my breast care nurse for a while, who was the one who talked me into trying the cold cap. She also went through the procedure for getting a wig (which seems overly complicated - NHS may be good at cancer, but they're still shit at procurement) and my Prescription Exemption Certificate - thanks to Gordon Brown, I get all my prescriptions free for the next 5 years, which is good. She also took me to see the chemo suite at the hospital, which was small, but similar to the suite I went to with my Mum (comfy chairs, pillows, lots of windows, flowers).
By the time we left it was 3pm. I hadn't had any breakfast. I need to keep a supply of food in my handbag from now on, just in case. We collected my Dad, who'd been planning of visiting his car nearby (the Cobra is poorly :( ), but ended up instead driving around Windsor. Dad judgement: more like Slough than what you'd expect of Windsor. Maybe he saw the wrong bits - I don't know, I've only ever driven though or been to the hospital. The bits around ythe castle (where we adjourned for lunch) were nice though. We bought fudge, which I then left in my Mums car, and they then went home - fail.
Friday 5 August 2011
What I know, What I don't know
It's been a fairly quiet week since the last trip to the hospital on Tuesday. Did a bit of shopping, went to the cinema and out for lunch. It's been quite relaxing, although I've had a lot more pain from this biopsy round than the first.
I've been pondering on what I know/ don't know so far, trying to organise my thoughts
What I know (although some of these are probably rather than knowns):
I've been pondering on what I know/ don't know so far, trying to organise my thoughts
What I know (although some of these are probably rather than knowns):
- I have an invasive cancer in my breast which has spread to my lymph nodes, but it seems no further.
- I will be having 8 sessions of chemo, 3 weeks apart, most likely starting a week next Tuesday. That's 6 months of treatment. So most likely I'll be done with the chemo by next March (Some sessions may be 4 weeks apart depending on how well I recover between them.
- After chemo I will have surgery - a mastectomy and lymph node clearance. They may or may not be able to do reconstruction at the same time.
- I will never have kids. I never wanted children, but it still sucks that the decision has been taken away from me. I could have IVF treatment to store eggs, but this is complicated., takes time and involves a lot of hormones, which could accelerate development of the tumour.
- I'm stronger than I thought I was. Although its been a big shock and mentally I'm struggling from time to time, I'm coping much better than I thought I would.
- I can't get a cat during my treatment, much to Simon's relief, and the dissapointment of my sister.
- My hair is going to fall out. I'm going to get some awesome wigs.
- I cope better when I have company. My coping mechanism largely revolves around humour, so with no one to laugh at my 'jokes' I struggle more.
- And, most importantly of all, I have awesome friends - the messages I've received from people, some who I've not seen for years, have really boosted me. Sorry that I've not been responding very much, but I do really, really appreciate the thoughts coming my way. Thank you.
- What type of breast cancer I have - the latest biopsies may give more information, but I may not know more until the whole lot is removed and looked at. This will have a bearing on my mid-long term prognosis.
- What my odds of disease free recovery are.
- How long it will be before I'm back to 'normal'. I'm getting closer to knowing as best as possible, but these things are variable.
- How I will cope with chemo. Reports I've had are mixed, some sail through, some people are wiped out completely, some people find they get easier, some that they get worse as you go through. The general consensus seems to be that you get 10 bad days and 10 good days between treatments.
- What caused it. This I will almost certainly never know, and that annoys me.
Tuesday 2 August 2011
A Scanner Darkly
Yesterday, the chaos following diagnosis began, but thanks to some good results, seems to have paused for a week...
Simon and I deceided to take a weekend away, as it may well have been our last weekend of relative normality for a good while. Destination was The Vineyard at Stockcross, which is a 5* hotel which just happens to have a 2 Michelin Star restaurant attached to it. It also has a wine list printed on A4 paper nearly an inch thick. The sommeliers are however, more than happy to provide recomendations for those without an encylopedic knowledge of wine. We ate and drank very well.
It was off to the hospital bright and early yesterday morning for the first round of scans - MRI and CT. My sister Kate was able to join me for these, and will be staying with us for the next few days to help me keep sane. If anyone know much about the relationship between me and my sister, you might think that this would be an oxymoron, but so far I haven't had the urge to kill her ;).
MRI was first up, and I had a cannula inserted into my arm, as for both tests they need to inject you with a contrast agent to help show up what they're looking for. In the case of the MRI they were looking for the extent of the tumour and the blood supply to it. Thankfully, given that I get slightly claustrophobic I was to go in the machine face down and feet first. The table I had to lie on made me feel very dignified - like a masseuse table, but instead of a hole for your head, two holes to put your boobs in. It wasn't too uncomfortable however, and I brought a Tim Minchin CD to listen to during the test, as it was 30 minutes long. Aside from the weird noises and the fact that my forehead went numb (you have to stay as still as possible though the test), it was actually rather relaxing.
As they pull you out of the machine and unplug your headphones, the music starts piping into the room. So as I was getting up and making myself decent again, the song Fuck I Love Boobs came on over the stereo. Thankfully not too loudly, but it did give me an attack of the giggles. Tim for the win.
CT scan was up next where I had to drink a litre of another contrast agent within an hour. It didn't taste too bad - although given that the flavour was aniseed, not everyone would agree. Given my previous studies, I knew what to expect from the MRI scan, but I wasn't sure what to expect from the CT scanner. It turned out to look like a truncated MRI scanner, so just a short torus. And so for my scan I was passed through the hole of a donut while being injected with a liquid that makes you feel like you've wet yourself. Glad that they warned me about that beforehand.
By 1pm I was finished with my scans, but the blood lab was closed for lunch, so Kate treated me to lunch at Cafe Rouge, and we did a bit of food shopping before heading back to the hospital for my blood tests.
Given that I had my bloods taken at 3pm yesterday, I was happily surprised to discover that the breast clinic had received them in time for my 10am appointment (actual time 11:30). I'm pleased to report that my blood tests came back looking normal (no raised tumour indicators, inflammatory markers, liver function etc), which along with the CT scan showing nothing abnormal indicates that its unlikely that the cancer has spread beyond my lymph nodes, which is excellent news. Just the bone scan which I'm waiting to be booked in for to go, but given the results so far, it looks like (relatively) good news.
I did have to have some further biopsies - on the lymph node and on the breast lump. The lymph node one was done under ultrasound, and wasn't too bad. They gave me extra anaesthetic to try and counter the fact that it usually runs out quickly for me. This time, the feeling came back part way through the second core sample being taken. I think that the nurses realised at this point that when I say I run through anaesthetic quickly, I'm not making it up.
Unfortunately this didn't really help me for the second lot of biopsies, which were done under mammogram (so as well as being harpooned with a big needle, you're being squashed into the imager). By the time that they were able to get the needle positioned for the biopsy the numbness was wearing (or in one case completely worn off). The plan was to take 7 samples. In the end, they only needed to take 4, as they were able to confirm that they had got the samples they needed quickly (they were specifically looking to get samples of the calcification in the lump - which can be where the primary cancer is located, but also generally will give more information on the type of cancer). I honestly have never experienced anything so painful before. I suppose that as the intention is to drag small lumps of flesh out of you, its not surprising. Hopefully I won't need any further biopsies, but I am likely to have to go through similar procedures. I'm hoping that there are alternative local anaesthetics available otherwise, unless they knock me out, its not likely to be painless.
Still, over all, today has brought good news, so I can't complain too much. And the staff looking after me were very kind and understanding and continually apologising for my pain, although it wasn't their fault.
Simon and I deceided to take a weekend away, as it may well have been our last weekend of relative normality for a good while. Destination was The Vineyard at Stockcross, which is a 5* hotel which just happens to have a 2 Michelin Star restaurant attached to it. It also has a wine list printed on A4 paper nearly an inch thick. The sommeliers are however, more than happy to provide recomendations for those without an encylopedic knowledge of wine. We ate and drank very well.
It was off to the hospital bright and early yesterday morning for the first round of scans - MRI and CT. My sister Kate was able to join me for these, and will be staying with us for the next few days to help me keep sane. If anyone know much about the relationship between me and my sister, you might think that this would be an oxymoron, but so far I haven't had the urge to kill her ;).
MRI was first up, and I had a cannula inserted into my arm, as for both tests they need to inject you with a contrast agent to help show up what they're looking for. In the case of the MRI they were looking for the extent of the tumour and the blood supply to it. Thankfully, given that I get slightly claustrophobic I was to go in the machine face down and feet first. The table I had to lie on made me feel very dignified - like a masseuse table, but instead of a hole for your head, two holes to put your boobs in. It wasn't too uncomfortable however, and I brought a Tim Minchin CD to listen to during the test, as it was 30 minutes long. Aside from the weird noises and the fact that my forehead went numb (you have to stay as still as possible though the test), it was actually rather relaxing.
As they pull you out of the machine and unplug your headphones, the music starts piping into the room. So as I was getting up and making myself decent again, the song Fuck I Love Boobs came on over the stereo. Thankfully not too loudly, but it did give me an attack of the giggles. Tim for the win.
CT scan was up next where I had to drink a litre of another contrast agent within an hour. It didn't taste too bad - although given that the flavour was aniseed, not everyone would agree. Given my previous studies, I knew what to expect from the MRI scan, but I wasn't sure what to expect from the CT scanner. It turned out to look like a truncated MRI scanner, so just a short torus. And so for my scan I was passed through the hole of a donut while being injected with a liquid that makes you feel like you've wet yourself. Glad that they warned me about that beforehand.
By 1pm I was finished with my scans, but the blood lab was closed for lunch, so Kate treated me to lunch at Cafe Rouge, and we did a bit of food shopping before heading back to the hospital for my blood tests.
Given that I had my bloods taken at 3pm yesterday, I was happily surprised to discover that the breast clinic had received them in time for my 10am appointment (actual time 11:30). I'm pleased to report that my blood tests came back looking normal (no raised tumour indicators, inflammatory markers, liver function etc), which along with the CT scan showing nothing abnormal indicates that its unlikely that the cancer has spread beyond my lymph nodes, which is excellent news. Just the bone scan which I'm waiting to be booked in for to go, but given the results so far, it looks like (relatively) good news.
I did have to have some further biopsies - on the lymph node and on the breast lump. The lymph node one was done under ultrasound, and wasn't too bad. They gave me extra anaesthetic to try and counter the fact that it usually runs out quickly for me. This time, the feeling came back part way through the second core sample being taken. I think that the nurses realised at this point that when I say I run through anaesthetic quickly, I'm not making it up.
Unfortunately this didn't really help me for the second lot of biopsies, which were done under mammogram (so as well as being harpooned with a big needle, you're being squashed into the imager). By the time that they were able to get the needle positioned for the biopsy the numbness was wearing (or in one case completely worn off). The plan was to take 7 samples. In the end, they only needed to take 4, as they were able to confirm that they had got the samples they needed quickly (they were specifically looking to get samples of the calcification in the lump - which can be where the primary cancer is located, but also generally will give more information on the type of cancer). I honestly have never experienced anything so painful before. I suppose that as the intention is to drag small lumps of flesh out of you, its not surprising. Hopefully I won't need any further biopsies, but I am likely to have to go through similar procedures. I'm hoping that there are alternative local anaesthetics available otherwise, unless they knock me out, its not likely to be painless.
Still, over all, today has brought good news, so I can't complain too much. And the staff looking after me were very kind and understanding and continually apologising for my pain, although it wasn't their fault.
Monday 1 August 2011
Diagnosis
There was just over a week between my initial appointment at the cancer care clinic and the follow up to receive the results of the biopsies. It was a tough week. I found myself not able to think straight or concentrate and found myself crying at the slightest thing.
Immediately after the initial appointment I came home with Simon and my Mum. I took some codeine for the pain following the biopsy, which turned out to be a big mistake, as it doesn't always react well with my stomach. So it made me quite ill, and then I went into shock. Which was fun.
I mostly stayed in the house for that week, but we went to stay with my parents for the weekend, and my Mum returned with us on the Sunday night to keep me company until the appointment came around. She kept me sane during the last few days, which were the worst, and also meant that she could come to the follow up appointment as well.
So, the diagnosis.
My appointment was for 10am on Wednesday. That's 10am in NHS time, so I actually saw the doctor around 11. The first thing I noticed when I booked into the appointment was that my files were now in a pink folder, rather than a clear folder that they were in the previous week. I was also put into a different queue than some of the other people coming into the clinic. I guessed correctly that this did not bode well. Panic began to set in.
One of the nurses came over just before 11, and asked me to go with her. She explained that I would be seeing a different doctor from last week, who I happened to know (having done some research beforehand) was one of the surgeons. Again, not a great sign. We waited (Simon, Mum and I) in a different little waiting area to be called through. When we were, it was the breast care nurse who called us in, and in addition to her and the surgeon (also a lady), there was another nurse.
My surgeon, Ms Predolac, sat me down, looked me straight in the eye, and immediately told me that "it's not good news". Although they had only found pre-cancerous cells in the breast lump, the biopsy of the lymph nodes showed fully cancerous cells. This means that there are fully cancerous cells in the breast tumour, but they haven't been found yet. As such, although she could tell me that the cancer is invasive, without further tests, she was not able to give me much further information about type/prognosis etc. However, given the results so far, my most likely course of treatment will be chemotherapy, followed by surgery (mastectomy + lymph node clearance), followed by radiotherapy - so I get the full house of treatments.
(If there is no cancer in the lymph nodes, chemo is not necessary. Chemo usually comes after surgery if they are not sure if the lymph nodes are affected, but as they know with me, it is best to start with the chemo straight away to catch any pesky cancer cells that may have spread anywhere else.)
I like my surgeon, she is very straightforward and explains things precisely, clearly and without talking down to you. I think I took the news quite well, considering. She explained that I'll need some further tests - specifically an MRI scan, CT scan, bone scan and blood tests, which will be able to tell them more about the cancer, and will help to determine exactly what my treatment will be. She then examined me, and the three of us were taken into a little sitting room to digest the news, accompanied by the breast care nurse.
Unsurprisingly, it was a lot to take in, and it's at this point that I broke down in tears. Simon went into shock and my Mum's face was grey. I think that experiencing their reaction was actually more upsetting to me than the diagnosis itself. A lot of people say after a diagnosis like this, that they knew already that it was going to be bad news. I didn't, it was a big shock, but one I'd also had the two weeks since finding the lump to start to digest as a possibility, so it wasn't as big a shock as it might have been.
Anne-Marie the breast care nurse was truly lovely. She set up all my appointments and gave us some information leaflets and generally was just there for all of us. She'll be my nurse through the whole process and I'm glad. I'm also happy with my surgeon, either she understands how different people work and take in information, or she happened to deliver the information I needed in the manner I happen to respond best to (facts and data).
I'm devastated by the diagnosis, and frustrated that I don't have all the information yet. I think weirdly though that it is easier for it to be happening to me than happening to someone else I love. It's something other people have said to me as well, and having also watched Mum go through this it seems to bear out. I can rationalise something happening to me better than I can when it's someone else, there are fewer unknowns for a start - I know how I'm feeling for a start. The very worst point of a very difficult day was when I was sat next to my Mum as she rang and told my Dad. I was close enough that I could hear his heart breaking over the phone.
Immediately after the initial appointment I came home with Simon and my Mum. I took some codeine for the pain following the biopsy, which turned out to be a big mistake, as it doesn't always react well with my stomach. So it made me quite ill, and then I went into shock. Which was fun.
I mostly stayed in the house for that week, but we went to stay with my parents for the weekend, and my Mum returned with us on the Sunday night to keep me company until the appointment came around. She kept me sane during the last few days, which were the worst, and also meant that she could come to the follow up appointment as well.
So, the diagnosis.
My appointment was for 10am on Wednesday. That's 10am in NHS time, so I actually saw the doctor around 11. The first thing I noticed when I booked into the appointment was that my files were now in a pink folder, rather than a clear folder that they were in the previous week. I was also put into a different queue than some of the other people coming into the clinic. I guessed correctly that this did not bode well. Panic began to set in.
One of the nurses came over just before 11, and asked me to go with her. She explained that I would be seeing a different doctor from last week, who I happened to know (having done some research beforehand) was one of the surgeons. Again, not a great sign. We waited (Simon, Mum and I) in a different little waiting area to be called through. When we were, it was the breast care nurse who called us in, and in addition to her and the surgeon (also a lady), there was another nurse.
My surgeon, Ms Predolac, sat me down, looked me straight in the eye, and immediately told me that "it's not good news". Although they had only found pre-cancerous cells in the breast lump, the biopsy of the lymph nodes showed fully cancerous cells. This means that there are fully cancerous cells in the breast tumour, but they haven't been found yet. As such, although she could tell me that the cancer is invasive, without further tests, she was not able to give me much further information about type/prognosis etc. However, given the results so far, my most likely course of treatment will be chemotherapy, followed by surgery (mastectomy + lymph node clearance), followed by radiotherapy - so I get the full house of treatments.
(If there is no cancer in the lymph nodes, chemo is not necessary. Chemo usually comes after surgery if they are not sure if the lymph nodes are affected, but as they know with me, it is best to start with the chemo straight away to catch any pesky cancer cells that may have spread anywhere else.)
I like my surgeon, she is very straightforward and explains things precisely, clearly and without talking down to you. I think I took the news quite well, considering. She explained that I'll need some further tests - specifically an MRI scan, CT scan, bone scan and blood tests, which will be able to tell them more about the cancer, and will help to determine exactly what my treatment will be. She then examined me, and the three of us were taken into a little sitting room to digest the news, accompanied by the breast care nurse.
Unsurprisingly, it was a lot to take in, and it's at this point that I broke down in tears. Simon went into shock and my Mum's face was grey. I think that experiencing their reaction was actually more upsetting to me than the diagnosis itself. A lot of people say after a diagnosis like this, that they knew already that it was going to be bad news. I didn't, it was a big shock, but one I'd also had the two weeks since finding the lump to start to digest as a possibility, so it wasn't as big a shock as it might have been.
Anne-Marie the breast care nurse was truly lovely. She set up all my appointments and gave us some information leaflets and generally was just there for all of us. She'll be my nurse through the whole process and I'm glad. I'm also happy with my surgeon, either she understands how different people work and take in information, or she happened to deliver the information I needed in the manner I happen to respond best to (facts and data).
I'm devastated by the diagnosis, and frustrated that I don't have all the information yet. I think weirdly though that it is easier for it to be happening to me than happening to someone else I love. It's something other people have said to me as well, and having also watched Mum go through this it seems to bear out. I can rationalise something happening to me better than I can when it's someone else, there are fewer unknowns for a start - I know how I'm feeling for a start. The very worst point of a very difficult day was when I was sat next to my Mum as she rang and told my Dad. I was close enough that I could hear his heart breaking over the phone.
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