I am one of life's planners and HATE to be rushed or caught on the hop. (Just ask Mr P!) I get very stressed if I don't have time to prepare ...
So today I have been able to confirm the following in my diary:
- That my breast will be electronically 'tagged' at 3.30pm on Monday afternoon. (I'm still finding this rather amusing ... Will it have a curfew? Or be allowed out without supervision?!)
- That, at the same time on Tuesday, I'm going to have my hair cut off. Not all of it - I'm not Joan of Arc - but short, so as to reduce the weight on my long-suffering follicles in advance of chemo. (I do have a LOT of hair)
In the meantime, I'm also hoping to pop 'up town' to a really good wig shop that has been recommended and also into the office to see my lovely colleagues. (Monday morning/lunch, if any of you are around?)
There are lots of other little things that I need to do too - like buy a thermometer(!) - but it's nice to feel that things are starting to happen.
PS. Happy Valentine's Day, Mr P. xxx
Tuesday 14 February 2012
Monday 13 February 2012
At last! We're finally off the starting blocks ...
Today was a good day. A really good day. This afternoon we met with the Oncologist from Charing Cross Hospital.
Firstly, he was personable and engaging - (which, believe me, are not qualities you find often in the NHS) - and wasted no time in telling, and showing us, that all the additional scans had come back clear. It was fantastic news.
Secondly, I'm now scheduled for my first of six chemotherapy 'treatments' next Wednesday (22nd). Essentially, every three weeks, I will go for a check-up and blood-test and then, providing my immune system is up to it, go back the next day and be given the treatment. There is then a further injection adminstered, the day afterwards, to bolster my white blood cell count.
This was all very positive and exactly what I needed to hear in terms of finally being able to forward plan. Obviously though, there is a downside ...
a) I'm going to feel like crap. I know that. And that will get progressively worse as I continue through to June. Nonetheless, I'm hoping this can be mitigated by healthy eating, a little exercise and just being sensible.
b) I'll probably lose some, if not all, of my hair. I've already said that I'll give the cold cap a go but I'm also looking into my wig options, so that I've got something ready should I need it.
c) It's unlikely that I'll ever have kids. Not that I was planning to, or even thinking about it, but at my age an 18-week course of chemotherapy followed by 5-years of anti-oestrogen drugs, will rather put the kibosh on things!
However, clearly the main thing is to get better. And now we've got some dates in the diary, I'm feeling much more positive that this will happen.
First though, I need to get a microchip put in my tumour. A kind of 'tit tag', that will allow them to keep track of where the tumour was should the chemo successfully shrink it out of sight. That, of course, is best case scenario. The next best is that the tumour shrinks to a size where surgery is feasible, have it cut out, and then follow up with a little bit of radiotherapy.
So while it's definitely going to be much more of a marathon than a light jog, at least we're up and running!
Firstly, he was personable and engaging - (which, believe me, are not qualities you find often in the NHS) - and wasted no time in telling, and showing us, that all the additional scans had come back clear. It was fantastic news.
Secondly, I'm now scheduled for my first of six chemotherapy 'treatments' next Wednesday (22nd). Essentially, every three weeks, I will go for a check-up and blood-test and then, providing my immune system is up to it, go back the next day and be given the treatment. There is then a further injection adminstered, the day afterwards, to bolster my white blood cell count.
This was all very positive and exactly what I needed to hear in terms of finally being able to forward plan. Obviously though, there is a downside ...
a) I'm going to feel like crap. I know that. And that will get progressively worse as I continue through to June. Nonetheless, I'm hoping this can be mitigated by healthy eating, a little exercise and just being sensible.
b) I'll probably lose some, if not all, of my hair. I've already said that I'll give the cold cap a go but I'm also looking into my wig options, so that I've got something ready should I need it.
c) It's unlikely that I'll ever have kids. Not that I was planning to, or even thinking about it, but at my age an 18-week course of chemotherapy followed by 5-years of anti-oestrogen drugs, will rather put the kibosh on things!
However, clearly the main thing is to get better. And now we've got some dates in the diary, I'm feeling much more positive that this will happen.
First though, I need to get a microchip put in my tumour. A kind of 'tit tag', that will allow them to keep track of where the tumour was should the chemo successfully shrink it out of sight. That, of course, is best case scenario. The next best is that the tumour shrinks to a size where surgery is feasible, have it cut out, and then follow up with a little bit of radiotherapy.
So while it's definitely going to be much more of a marathon than a light jog, at least we're up and running!
Sunday 12 February 2012
Lazy weekend
After the surprises of last week, it’s been nice to have a few days
just to relax and take stock.
The impact of not having surgery, and still not having a firm treatment start date, has been unsettling. Certainly, I spent most of Friday feeling very deflated.
Fortunately, it was also the date of our annual visit to the black-tie ‘S.O.S. Ball’ where thirteen of us gathered to quaff champers, eat food aplenty and make a right show of ourselves on the dance floor.
It was also a chance to catch up with people that I hadn’t seen for a while and who have successfully been through a similar experience. Tips on wigs, cold caps, and handling the effects of chemo were all forthcoming with humour and frankness. It was a really great night.
Saturday though, was a wash-out! It was a (very) late one on Friday but even, that aside, I have really started to notice how tired I constantly seem to be. The lack of routine and structure is a major factor, I know, as is the stress and mental fatigue. But fortunately, yet again, brilliant friends were on hand to feed us our dinner so neither Mr P. or I went hungry. (We are particularly blessed to know so many great cooks!)
So today, I’m feeling spry. Up with the larks and down to the gym to re-fuel those energy levels. And this afternoon we’re off to Berkshire to see members of our respective families. It will be great to see everyone and, I’m sure, set me up for a positive week.
Bring it on!
The impact of not having surgery, and still not having a firm treatment start date, has been unsettling. Certainly, I spent most of Friday feeling very deflated.
Fortunately, it was also the date of our annual visit to the black-tie ‘S.O.S. Ball’ where thirteen of us gathered to quaff champers, eat food aplenty and make a right show of ourselves on the dance floor.
It was also a chance to catch up with people that I hadn’t seen for a while and who have successfully been through a similar experience. Tips on wigs, cold caps, and handling the effects of chemo were all forthcoming with humour and frankness. It was a really great night.
Saturday though, was a wash-out! It was a (very) late one on Friday but even, that aside, I have really started to notice how tired I constantly seem to be. The lack of routine and structure is a major factor, I know, as is the stress and mental fatigue. But fortunately, yet again, brilliant friends were on hand to feed us our dinner so neither Mr P. or I went hungry. (We are particularly blessed to know so many great cooks!)
So today, I’m feeling spry. Up with the larks and down to the gym to re-fuel those energy levels. And this afternoon we’re off to Berkshire to see members of our respective families. It will be great to see everyone and, I’m sure, set me up for a positive week.
Bring it on!
Thursday 9 February 2012
Size matters
I know I'm only 5 ft but I never realised that, medically speaking, my size would be such an issue.
To accompany my unfortunate diagnosis of 'small breasts', it appears I also have small veins. Or so the Radiographer conducting my CT scan kindly pointed out. Tiny tubes aside, it was a remarkably straightforward process. I particularly enjoyed the fact that the machine ‘talked’ to me: “Breathe in and hold your breath ... Now, breathe normally.”
Which is more than I heard from the Oncologist; I’ll have to wait until Monday to speak to him about my chemotherapy options. The delay is obviously frustrating but at least it gives me a few more days to think about things and to draft some questions.
Speaking of which, I must thank my friends for the hilarious bluntness of some of their questions last night: “Why can’t you just have a mastectomy?” Er ... ? “Will all your pubes fall out?” Huh?! Actually, in response to the latter, I have been told that they will. Nice.
As for the hair of my head, apparently there is something called a ‘cold cap’ that you can wear before, during and after each chemotherapy treatment. The cap is very cold (obviously) and acts to cool the scalp and restrict the blood - and therefore the chemotherapy drugs – reaching the follicles. Its success varies according to individual and/or medication, but I think it’s certainly worth investigating ...
To accompany my unfortunate diagnosis of 'small breasts', it appears I also have small veins. Or so the Radiographer conducting my CT scan kindly pointed out. Tiny tubes aside, it was a remarkably straightforward process. I particularly enjoyed the fact that the machine ‘talked’ to me: “Breathe in and hold your breath ... Now, breathe normally.”
Which is more than I heard from the Oncologist; I’ll have to wait until Monday to speak to him about my chemotherapy options. The delay is obviously frustrating but at least it gives me a few more days to think about things and to draft some questions.
Speaking of which, I must thank my friends for the hilarious bluntness of some of their questions last night: “Why can’t you just have a mastectomy?” Er ... ? “Will all your pubes fall out?” Huh?! Actually, in response to the latter, I have been told that they will. Nice.
As for the hair of my head, apparently there is something called a ‘cold cap’ that you can wear before, during and after each chemotherapy treatment. The cap is very cold (obviously) and acts to cool the scalp and restrict the blood - and therefore the chemotherapy drugs – reaching the follicles. Its success varies according to individual and/or medication, but I think it’s certainly worth investigating ...
Wednesday 8 February 2012
Shit. I didn't see that coming!
Well, that was a curved ball - turns out I won’t be having an operation after all. At least, not yet.
Saw my consultant this afternoon at Ealing Hospital
Turns out that, while they can’t see anything else untoward in my chest, the tumour (or the area it includes) is now bigger than it was. Originally we were told that it was small. That is, less than 2cm. Now however, it is 3.1cm. This might be due to inflammation from the biopsy but they just don’t know.
This then causes a problem. Because of its high position on my chest and my small stature – (and by that, I mean tiny tits) – surgery is now more difficult. The consultant did mutter several times: “I wish you were a few cup sizes bigger ... " You and me both, sunshine.
If I still wanted surgery I could have it – apparently. But it would mean taking a significant chunk of what is already a ‘small breast’ - (the medical term, I believe) – while the position makes reconstruction difficult.
Ah, bollocks …
Instead, I have been recommended a course of chemotherapy to shrink the tumour first. This will take up to six months and then I’ll have the operation, if required. So, I’ve said ‘yes – but please now just get on with it.’
I’ll be back at Ealing tomorrow for my CT scan so they’re trying to get me an appointment to speak with the Oncologist (i.e. the chemo specialist). Failing that, it will be on Monday – with a view to starting chemo in the next week or so at Charing Cross .
But still no definite treatment dates. Boo!
*******************************
PS. In other news, had a letter from The Royal Marsden’s inappropriately named ‘Rapid Diagnostic Unit’ confirming my appointment on 29 February. The transfer of care request was sent on 27 January ...
Thanks but no thanks, fella!
Thanks but no thanks, fella!
Hmm.
I've woken up in a really weird mood today. I'm feeling unsettled.
I know why, of course. I'm going to hospital this afternoon to get the results of my various tests and scans. And while I don't have any reason to think I'll be getting more bad news, there's always the nagging fear that I might.
For the most part, I've been quite practical and 'matter of fact' as my friends have put it. But today, I've had a little wobble. I'll be honest - I'm scared ...
I know why, of course. I'm going to hospital this afternoon to get the results of my various tests and scans. And while I don't have any reason to think I'll be getting more bad news, there's always the nagging fear that I might.
For the most part, I've been quite practical and 'matter of fact' as my friends have put it. But today, I've had a little wobble. I'll be honest - I'm scared ...
Tuesday 7 February 2012
Out to lunch ...
I've only been off work two weeks and I'm already starting to lose the plot.
It's ridiculous, really. You spend your life wishing that you didn't have to drag your carcass into the office but when you don't have that enforced structure to your week, it's amazing how quickly the days start to blur.
I know these two weeks are important; to get essential tests done and let the news sink in but I really need to get into some sort of routine.
But at the moment I just can't plan. For anything. Every invitation I accept is on the proviso that I may have a medical appointment that I just don't know about yet. I'm living my life in limbo ...
And can I say that there have been a lot of invitations. Which is lovely and has really helped to distract me from the interminable waiting. But it also makes me feel a bit guilty. Because, well ... I don't look or feel ill! I know that will change when treatment starts but, apart from the fact I have a tumour, I'm actually very fit and well. If a bit bored.
So I will go out to lunch today and enjoy it. And I will take advantage of the free ticket to see the Wizard of Oz tonight, and enjoy it ... because who knows what tomorrow might bring.
Well, in fairness, I do. I'm supposed to be getting the first part of my treatment plan so hopefully - finally - I'll find out when my operation will be. So, for the sake of my sanity, I'm keeping everything crossed!
It's ridiculous, really. You spend your life wishing that you didn't have to drag your carcass into the office but when you don't have that enforced structure to your week, it's amazing how quickly the days start to blur.
I know these two weeks are important; to get essential tests done and let the news sink in but I really need to get into some sort of routine.
But at the moment I just can't plan. For anything. Every invitation I accept is on the proviso that I may have a medical appointment that I just don't know about yet. I'm living my life in limbo ...
And can I say that there have been a lot of invitations. Which is lovely and has really helped to distract me from the interminable waiting. But it also makes me feel a bit guilty. Because, well ... I don't look or feel ill! I know that will change when treatment starts but, apart from the fact I have a tumour, I'm actually very fit and well. If a bit bored.
So I will go out to lunch today and enjoy it. And I will take advantage of the free ticket to see the Wizard of Oz tonight, and enjoy it ... because who knows what tomorrow might bring.
Well, in fairness, I do. I'm supposed to be getting the first part of my treatment plan so hopefully - finally - I'll find out when my operation will be. So, for the sake of my sanity, I'm keeping everything crossed!
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