So, don't want to count my chickens, but I might get treated at the Royal Marsden after all.
Yesterday I called to say 'thanks but no thanks' to my appointment on 29th February and told the woman in appointments how unhappy I was about how my case had been handled. She apologised and expressed her surprise and said that she would look into things for me to see if it was still worth me coming in.
I then received a call from the Consultant's secretary (the one I had previously dealt with) who, after some to-ing and fro-ing and inital frostiness, I think realised that there had indeed been an administrative cock-up. She was then enormously helpful!
As a result, I've now heard from the Registrar. Ideally, they would like a patient to have all their treatment - i.e. chemotherapy, surgery etc. - at the same hospital but it is possible for me to have my chemo at Charing Cross and then go to Royal Marsden for my operation. So she is re-scheduling my appointment to see the Consultant Surgeon to May after my fourth course of chemo.
Clearly, I'm delighted. And goes to show that being direct and honest about how you feel, does pay off!
Friday 17 February 2012
There's a good girl ...
So yesterday, I was taken for a walk in the park and next week, I’m
being micro-chipped. (I’m not sure I like where this is heading!)
To be fair though, the walk was a good idea – even if I had to be coerced. It was nice to get a bit of fresh air and have a natter. And tonight we’re being cooked for again. Honestly, I never knew having cancer could be so sociable!
In all seriousness, I wouldn't want anyone to think that this process has been, or is, easy-going. It really isn't. But if you can't make light of things and take your laughs where you can, you really would go mad.
There are times when I've found it hard. I'll be doing something quite innocuous - like making a cup of tea - and then, in that unguarded, unconscious moment, start to cry. And I know that's fine. Natural. But it's not something that most people will get to see. I'm a hard-faced bitch, remember ... ;-)
So, can I say again how much I really do appreciate all the offers of help that we've received and while we may not have taken you up on them thus far, it doesn't mean that we won't. It means so much just to know that they're there.
To be fair though, the walk was a good idea – even if I had to be coerced. It was nice to get a bit of fresh air and have a natter. And tonight we’re being cooked for again. Honestly, I never knew having cancer could be so sociable!
In all seriousness, I wouldn't want anyone to think that this process has been, or is, easy-going. It really isn't. But if you can't make light of things and take your laughs where you can, you really would go mad.
There are times when I've found it hard. I'll be doing something quite innocuous - like making a cup of tea - and then, in that unguarded, unconscious moment, start to cry. And I know that's fine. Natural. But it's not something that most people will get to see. I'm a hard-faced bitch, remember ... ;-)
So, can I say again how much I really do appreciate all the offers of help that we've received and while we may not have taken you up on them thus far, it doesn't mean that we won't. It means so much just to know that they're there.
Thursday 16 February 2012
The calm before the storm
OK, so I’ve got a few quiet days to get things done. And have I ... ? Have I,
heck!?
I blame Mr P; he only went and gave me an iPad for Valentine’s Day. It was the most lovely and thoughtful (and expensive!) of gestures. His thinking is that it will keep me entertained while at treatment appointments and, quote, “make your life easier.”
He’s right. It will. But I also can’t stop playing with the bloody thing! I think he may yet confiscate it and only let me have it at hospital or as a treat when I’ve actually done the things that I’ve promised to do. Today he’s made me promise to walk to the station and back, just to get me out of the house. I haven’t ... well, not yet!
What I have done though, is start on my ‘Cancer Cupboard’. Lots of people have been giving me tips on things to buy - (thank you!) - and I also remember a few bits and pieces from when my Dad was ill. This includes:
So I haven’t been wholly inactive. Just mostly ... ;-)
But, on a separate note, someone has also sent me details of Macmillan Cancer Support’s Starlight Supper on Saturday 10 March. It’s being promoted through Smooth Radio and they are encouraging people to host a dinner party and make a donation to Macmillan. Sounds like a great idea.
I blame Mr P; he only went and gave me an iPad for Valentine’s Day. It was the most lovely and thoughtful (and expensive!) of gestures. His thinking is that it will keep me entertained while at treatment appointments and, quote, “make your life easier.”
He’s right. It will. But I also can’t stop playing with the bloody thing! I think he may yet confiscate it and only let me have it at hospital or as a treat when I’ve actually done the things that I’ve promised to do. Today he’s made me promise to walk to the station and back, just to get me out of the house. I haven’t ... well, not yet!
What I have done though, is start on my ‘Cancer Cupboard’. Lots of people have been giving me tips on things to buy - (thank you!) - and I also remember a few bits and pieces from when my Dad was ill. This includes:
- Pecan nuts containing Zinc to boost my immune system, which will take a battering over the next 18 weeks.
- Dried apricots containing Lycopene, which is particularly good at fighting cancer. Tomatoes are another good source, plus various other fruits and vegetables - and chicken!
- Iron tablets to prevent anaemia and Vitamin C to make sure my body can absorb the iron.
- Aloe Vera gel for if my hands and feet get sore.
- Thermometer to keep an eye on my health as I could easily succumb to an infection. If my temperature does rise, I have to go straight to the hospital.
- Manuka honey, which is anti-bacterial and can help prevent mouth sores.
- Crystallised ginger, to stop me feeling sick. (My Dad used to particularly enjoy the dark chocolate gingers from Thorntons. Trouble was, the rest of us liked to eat them too!)
- Anti-sickness wristbands.
But, on a separate note, someone has also sent me details of Macmillan Cancer Support’s Starlight Supper on Saturday 10 March. It’s being promoted through Smooth Radio and they are encouraging people to host a dinner party and make a donation to Macmillan. Sounds like a great idea.
Tuesday 14 February 2012
Be prepared!
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
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
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 ...
Subscribe to:
Posts (Atom)