Sunday - The morning suit debate is still in the air but I am leaving it to himself to decide. I am having enough trouble with my son asking me to tell his girlfriend she can’t wear pink! ‘Why not?’ I ask. Because she wants him to match i.e. to wear a pink shirt and tie as well. Apparently my son hates pink. I have to admit that I never dressed him in pink as a child. I see now that I have failed to put him in touch with his feminine side – mea culpa!
I continue to do my best to resist becoming absorbed in the wedding stuff. It’s hard because everyone else is so excited about it. Good grief – we are two aging baby boomers not a couple of twenty somethings. But still the whole thing gathers momentum at a remorseless pace.
There is the whole issue of the hen party. My sister-in-law-to-be has taken this one over along with a close friend from my old golf club. I am staying out of it. It became more complicated yesterday when friends at my new golf club started to plot their own event. I can see the headlines… “Lady golfers arrested in hen night gang warfare battle for custody of bride”.
The other big issue has been finding the fabric for the wedding outfit. An elegant, slightly retro suit in red. The initial samples I found were dismissed out of hand by the dressmaker as being too lightweight. She gave me the names of various emporia to visit/contact for something a bit more substantial.
So I left work early last week and took a taxi to a part of London I had never ventured into before. Somewhere north of Marylebone Road, bordering the Edgeware Road there is a mixed community that specialises in fabric shops. Amazing places full of fantastic material. Everything from sari fabrics to good strong tartan that would grace the plus-four clad thighs of Clarissa Dickson Wright. The first one I visited was Joel & Sons – purveyors of fine fabrics to HM the Queen. Thousands of rolls stacked to the ceiling. I asked for, and was shown, the heavy-duty fabrics they had in red silk. All wonderful – all nearly £100 per metre. Next to me a girl was fingering the most beautiful black lace material. The price? “£398 per metre madam”. I am out of touch. I retreated with some samples and smiling lies that I would get back to them.
Fortunately, I had also contacted another recommendation from the dressmaker – with a request for samples and prices. Hallelujah – they came through with the perfect taffeta silk in the right colour and just over £23 per metre – Something else to tick off the list.
Next week I am going to Rigby and Peller in Mayfair – to get a ‘foundation garment’ that will disguise all the wobbly bits and convince the partially sighted that I have a waist. Then I have the first fitting of the calico version of the outfit on Friday.
The week after I visit the hairdresser for the first time in 8 months – the new hair will be coloured and shaped (cut is too strong a word).
Needless to say the wig is getting a bit dejected.
I’ll keep you posted.
Sunday, 21 February 2010
Monday, 1 February 2010
1 February - Past tenses and future plans
Monday - January has been frantic work wise so it has been a while since I updated this blog. This is also partly because I have moved on a long way.
In January I had follow-up consultations with both my Surgeon and Oncologist. Basically they ticked all the boxes and I am now into several years of regular monitoring but I can say that ‘it’ is over. Significantly I asked my surgeon when I could say I ‘had’ rather than ‘I have’ breast cancer. His response was “now”.
It goes a long way to making you feel like a person rather than a patient.
The hair continues to grow…very grey and it sort of sticks out all over the place but it is quite thick. I will have it cut in about five weeks to start to give it some shape. I don’t wear the wig at home anymore and this weekend even went out to drinks at neighbors without it – they thought I looked like Judy Dench as ‘M’ in the Bond films. I still wear the wig to work and golf – partly because it keeps my head warm and it is still freezing here.
So now we look ahead.
On with the wedding preparations – when C and I decided last year that we would get married it seemed ages until 14 May 2010. Now it is racing towards us like a runaway train.
It is a long time since I last got married – nearly 35 years in fact. Back then in mists of time arranging a wedding was largely a do-it-yourself affair. You or your mum made the dress and the bridesmaids made theirs. A family member supplied a suitable car. And the local photographer took a few posed photos while your friends took lots of slightly wonky ones. There were no sky lanterns, table favours, dresses costing thousands of pounds, or photographers taking pictures of your wobbly bits and gummed up eyes first thing in the morning.
Now it seems that there is a multi million pound industry in supplying bridezillas with stuff that turns them into clone ‘princesses’ of one another and lines the pockets of photographers, caterers, florists and the weird suppliers of wedding junk. Quite apart from the ‘Wedding fair’ phenomenon -what is that all about? Somebody shoot me if I ever suggest going to one.
So the challenge is to avoid all of this as much as possible.
We’ve designed our own invitations and had them printed by a local commercial firm, agreed with a photographer that we only want pictures at the Register Office and up to the time we sit down to eat – so halved the price, found a dressmaker whose prices don’t start at £2000 and who understands that this is not a ‘meringue’ job. Ordered simple flowers…etc.
Then my partner starts talking about whether he and his best man should wear morning suits….mmmmmm.
In January I had follow-up consultations with both my Surgeon and Oncologist. Basically they ticked all the boxes and I am now into several years of regular monitoring but I can say that ‘it’ is over. Significantly I asked my surgeon when I could say I ‘had’ rather than ‘I have’ breast cancer. His response was “now”.
It goes a long way to making you feel like a person rather than a patient.
The hair continues to grow…very grey and it sort of sticks out all over the place but it is quite thick. I will have it cut in about five weeks to start to give it some shape. I don’t wear the wig at home anymore and this weekend even went out to drinks at neighbors without it – they thought I looked like Judy Dench as ‘M’ in the Bond films. I still wear the wig to work and golf – partly because it keeps my head warm and it is still freezing here.
So now we look ahead.
On with the wedding preparations – when C and I decided last year that we would get married it seemed ages until 14 May 2010. Now it is racing towards us like a runaway train.
It is a long time since I last got married – nearly 35 years in fact. Back then in mists of time arranging a wedding was largely a do-it-yourself affair. You or your mum made the dress and the bridesmaids made theirs. A family member supplied a suitable car. And the local photographer took a few posed photos while your friends took lots of slightly wonky ones. There were no sky lanterns, table favours, dresses costing thousands of pounds, or photographers taking pictures of your wobbly bits and gummed up eyes first thing in the morning.
Now it seems that there is a multi million pound industry in supplying bridezillas with stuff that turns them into clone ‘princesses’ of one another and lines the pockets of photographers, caterers, florists and the weird suppliers of wedding junk. Quite apart from the ‘Wedding fair’ phenomenon -what is that all about? Somebody shoot me if I ever suggest going to one.
So the challenge is to avoid all of this as much as possible.
We’ve designed our own invitations and had them printed by a local commercial firm, agreed with a photographer that we only want pictures at the Register Office and up to the time we sit down to eat – so halved the price, found a dressmaker whose prices don’t start at £2000 and who understands that this is not a ‘meringue’ job. Ordered simple flowers…etc.
Then my partner starts talking about whether he and his best man should wear morning suits….mmmmmm.
Wednesday, 6 January 2010
6 January - Hair I come!
Wednesday
Sitting in my office at home watching the drifting flakes add to the already 12inches deep snow outside, I can’t help but keep rubbing my hands over the dense cap of grey hair I now have. It is not very long and it seems to be a bit curly but it is definitely there and much thicker than before I lost it. Even more exciting…I now have eyelashes and eyebrows, which makes a huge difference to the way I look. I have started to use mascara again.
Also for the first time in nearly seven months I had to shave my legs and pits while on holiday in Spain. I never thought I would welcome the day.
I still use the wig for work and ‘going out’ but at home and among friends I don’t bother.
Even the lymphedema in the arm has settled down so that I only wear the compression sleeve for long hours at the computer and after golf if the arm has swollen a little (which doesn’t happen much.) So that seems to be manageable.
My fingernails are improving. Not sure about the toenails as they have polish on them. Seem OK.
I’m due to see Mr P the surgeon tomorrow for a follow up but I have a feeling I won’t be able to get there as we can’t get the cars out of the drive at the moment let alone down the hill. Also due to see Dr S next week. Hopefully the conditions will be a bit better by then.
So all in all, things are going well. All I have to do now is lose some more weight, get the wedding organised, write the third book, and get my golf game up to a competitive standard again. (It’s getting there – I won the ladies Division 1 medal while we were away in Spain using my Xmas present – a set of duplicate clubs to those I have in UK, which I can leave out in Spain.)
Sitting in my office at home watching the drifting flakes add to the already 12inches deep snow outside, I can’t help but keep rubbing my hands over the dense cap of grey hair I now have. It is not very long and it seems to be a bit curly but it is definitely there and much thicker than before I lost it. Even more exciting…I now have eyelashes and eyebrows, which makes a huge difference to the way I look. I have started to use mascara again.
Also for the first time in nearly seven months I had to shave my legs and pits while on holiday in Spain. I never thought I would welcome the day.
I still use the wig for work and ‘going out’ but at home and among friends I don’t bother.
Even the lymphedema in the arm has settled down so that I only wear the compression sleeve for long hours at the computer and after golf if the arm has swollen a little (which doesn’t happen much.) So that seems to be manageable.
My fingernails are improving. Not sure about the toenails as they have polish on them. Seem OK.
I’m due to see Mr P the surgeon tomorrow for a follow up but I have a feeling I won’t be able to get there as we can’t get the cars out of the drive at the moment let alone down the hill. Also due to see Dr S next week. Hopefully the conditions will be a bit better by then.
So all in all, things are going well. All I have to do now is lose some more weight, get the wedding organised, write the third book, and get my golf game up to a competitive standard again. (It’s getting there – I won the ladies Division 1 medal while we were away in Spain using my Xmas present – a set of duplicate clubs to those I have in UK, which I can leave out in Spain.)
Friday, 27 November 2009
November 27 – Kerzapped! – Job done.
Friday. - Done, finished, complete, over, ….that’s it. I had my last radiotherapy zapping on Monday afternoon. Me and MLB are now starting to become ‘normal’ again.
The whole zapping experience was fine. I had, in a moment of boredom, read some forum entries on a breast cancer website which moaned on and on about how tired people felt and how painful their boobs were and how ghastly the whole process was. They must live on another planet. I have had no tiredness despite the travelling, no soreness, no broken skin, no burning sensation, and I wore a bra the whole time.
There were some funny moments. Normally you are allocated to one Linear Accelerator and its attached team – I was allocated LA6. One day however, I had to go to a different one as LA6 was having a routine service. So I found myself in a waiting area with loads of men in dressing gowns, no trousers but they were wearing shoes and socks….obviously the prostate cancer crowd. I was called in and sure enough it was an all male radiography team. They had me in hoots as they set up the table for a breast cancer zap and then took about 20 minutes to get me lined up as compared with my usual team who could do it in about 2 minutes. They got there in the end. They sheepishly admitted that they didn’t do breasts very often but hoped it was OK! Seemed all right to me.
During this time I had some golfing mates over for lunch and they bought me the most beautiful bunch of flowers. So lovely I have had to add a photo of them to this blog to say thank you.
Now the other news is……da da…My hair is growing!! Just a bit but it is starting to become obvious. Not enough for me to go wigless yet but I think in a couple of weeks I might experiment.
Other side effect news. My nails are a mess – including my toenails. I had a pedicure a couple of days ago and when the beautician took the old nail polish off two of the toenails were black. So we covered them up again rather quickly.
My left arm is now pretty much a normal size after the course of MLD and I wear the horrible compression sleeve for all activity but it comes off in the evening. So far so good.
Still a bit of tingling and numbness in my feet but this should disappear over the next few months.
So I’m looking forward to going to Spain for Xmas and New Year and just relaxing without having to face any more treatment or pill popping apart from the Arimidex which I will take for five years. Just like HRT or the pill. Not a difficult one.
As my strength is returning, so my golf is starting to get back to a reasonable form and I should become competitive again by spring – watch out all my golfing mates.
I’ll post the next blog after I get back from Spain, hopefully with news of massive hair growth etc. Until then have a fun festive season and happy new year.
The whole zapping experience was fine. I had, in a moment of boredom, read some forum entries on a breast cancer website which moaned on and on about how tired people felt and how painful their boobs were and how ghastly the whole process was. They must live on another planet. I have had no tiredness despite the travelling, no soreness, no broken skin, no burning sensation, and I wore a bra the whole time.
There were some funny moments. Normally you are allocated to one Linear Accelerator and its attached team – I was allocated LA6. One day however, I had to go to a different one as LA6 was having a routine service. So I found myself in a waiting area with loads of men in dressing gowns, no trousers but they were wearing shoes and socks….obviously the prostate cancer crowd. I was called in and sure enough it was an all male radiography team. They had me in hoots as they set up the table for a breast cancer zap and then took about 20 minutes to get me lined up as compared with my usual team who could do it in about 2 minutes. They got there in the end. They sheepishly admitted that they didn’t do breasts very often but hoped it was OK! Seemed all right to me.
During this time I had some golfing mates over for lunch and they bought me the most beautiful bunch of flowers. So lovely I have had to add a photo of them to this blog to say thank you.
Now the other news is……da da…My hair is growing!! Just a bit but it is starting to become obvious. Not enough for me to go wigless yet but I think in a couple of weeks I might experiment.
Other side effect news. My nails are a mess – including my toenails. I had a pedicure a couple of days ago and when the beautician took the old nail polish off two of the toenails were black. So we covered them up again rather quickly.
My left arm is now pretty much a normal size after the course of MLD and I wear the horrible compression sleeve for all activity but it comes off in the evening. So far so good.
Still a bit of tingling and numbness in my feet but this should disappear over the next few months.
So I’m looking forward to going to Spain for Xmas and New Year and just relaxing without having to face any more treatment or pill popping apart from the Arimidex which I will take for five years. Just like HRT or the pill. Not a difficult one.
As my strength is returning, so my golf is starting to get back to a reasonable form and I should become competitive again by spring – watch out all my golfing mates.
I’ll post the next blog after I get back from Spain, hopefully with news of massive hair growth etc. Until then have a fun festive season and happy new year.
Saturday, 14 November 2009
November 14 – Nine down, 6 to go.
Saturday - Golf is cancelled because of gale force winds and driving rain. Probably the worst storm we have had this year. Sitting in my study I can watch the leaves being stripped off the trees. It’s a good time to catch up on the blog.
Over half way through the zapping. It seems to have gone very quickly and so far, compared to chemo, it is very straightforward. The biggest hassle is having to drive and hour each way for a 10-minute process. As advised, I diligently anoint MLB with aqueous cream morning and night and it seems to have the desired effect in that my skin hasn’t really shown much sign of being affected. I was warned that it would probably go red and start to become quite sore after about seven to ten days but this hasn’t happened. I do know that the effect is cumulative though and continues to get worse for a couple of weeks after the therapy has finished so I am expecting to get some reaction over the next few days.
More info on radiotherapy at St Luke’s Cancer Centre here for those who are interested http://www.royalsurrey.nhs.uk/External-beam-radiotherapy
The other good news is that I have also now had four sessions of MLD and the results are quite amazing. The therapist measured both arms before she started to see how badly swollen the left one was. There was a difference of about 3 cms in some places and her whizzy computer calculated that the arm was carrying 390mls of extra fluid…that’s around ¾ of a pint. Those of you who recall Tony Hancock might remember him going to give blood and coming out with the immortal words along the lines of...”A pint! That’s an armful.” How true.
Anyway, the MLD has reduced a lot of the swelling and the overall process has kick started my lymph system working properly again so that I have lost something like 8 lbs in less than a week. My ankles are back to normal and I am just much less bloated overall. Even my face and neck look thinner. I must have been carrying a massive amount of extra fluid around. All thanks to the b***** chemo.
This afternoon I will pick up a compression sleeve from the therapist. I will wear this for golf, working on the computer, flying and anything that may cause the arm to swell again. Hopefully this plus the exercises and simple massage I can do myself, along with some top up trips to the therapist will keep things under control. The bad news is that I will have this problem for life. I just have to learn to live with it.
It could be worse…I have a permanent excuse to ask people to carry things for me!
Still no real sign of any hair growing back. I have had a faint, thin fuzz for a few weeks but it hasn’t developed into anything. It’s got to happen soon!!
The wig is going out this evening. It is the night of the golf ball at the RAC. It will be the first (and probably the last) time it gets to go to a posh do.
Over half way through the zapping. It seems to have gone very quickly and so far, compared to chemo, it is very straightforward. The biggest hassle is having to drive and hour each way for a 10-minute process. As advised, I diligently anoint MLB with aqueous cream morning and night and it seems to have the desired effect in that my skin hasn’t really shown much sign of being affected. I was warned that it would probably go red and start to become quite sore after about seven to ten days but this hasn’t happened. I do know that the effect is cumulative though and continues to get worse for a couple of weeks after the therapy has finished so I am expecting to get some reaction over the next few days.
More info on radiotherapy at St Luke’s Cancer Centre here for those who are interested http://www.royalsurrey.nhs.uk/External-beam-radiotherapy
The other good news is that I have also now had four sessions of MLD and the results are quite amazing. The therapist measured both arms before she started to see how badly swollen the left one was. There was a difference of about 3 cms in some places and her whizzy computer calculated that the arm was carrying 390mls of extra fluid…that’s around ¾ of a pint. Those of you who recall Tony Hancock might remember him going to give blood and coming out with the immortal words along the lines of...”A pint! That’s an armful.” How true.
Anyway, the MLD has reduced a lot of the swelling and the overall process has kick started my lymph system working properly again so that I have lost something like 8 lbs in less than a week. My ankles are back to normal and I am just much less bloated overall. Even my face and neck look thinner. I must have been carrying a massive amount of extra fluid around. All thanks to the b***** chemo.
This afternoon I will pick up a compression sleeve from the therapist. I will wear this for golf, working on the computer, flying and anything that may cause the arm to swell again. Hopefully this plus the exercises and simple massage I can do myself, along with some top up trips to the therapist will keep things under control. The bad news is that I will have this problem for life. I just have to learn to live with it.
It could be worse…I have a permanent excuse to ask people to carry things for me!
Still no real sign of any hair growing back. I have had a faint, thin fuzz for a few weeks but it hasn’t developed into anything. It’s got to happen soon!!
The wig is going out this evening. It is the night of the golf ball at the RAC. It will be the first (and probably the last) time it gets to go to a posh do.
Tuesday, 3 November 2009
November 3 - Zapped
Today was the first day of Radiotherapy. Now call me old fashioned but as a private patient, when I have an appointment for 10.40, I expect it to be kept within 10 minutes or so. Especially as I am still working and have arranged meetings and teleconferences around the scheduled radiotherapy times.
I didn’t get in to be zapped until 50 minutes after my scheduled time. Needless to say, I explained which way was up to the people concerned. I don’t think it will happen again!
Early days but the actual zapping bit was straightforward. Large machine is positioned by two radiographers who mutter strange numbers at each other for a few minutes and move you around in the dark with light beams being lined up on the tattoos etc. Then a minute or two of actual zapping – only noticeable by the noise the Linear Accelerator makes, and then it is off to put the bra and top back on and home we go. The biggest problem is that it takes me at least 40 mins to drive each way, which is a complete drag.
Apparently I am very likely to get a sore boob after a week to 10 days, which will last for 2-3 weeks after the therapy is complete. C’est la Guerre.
My biggest concern at the moment is getting the lymphedema in my left arm treated. My medical insurance won’t cover Manual Lymphatic Drainage Massage by any one who is not a registered nurse or certified by the HPC. As there is no category for MLD specialists in the HPC that only leaves RNs who are also MLD specialists and there aren’t any within about 25 miles of where I live. There is however a highly recommended therapist where I live so I am working on trying to get the Insurance Company to agree to use her. If not I will have to pay for treatment myself or use the NHS (many weeks of waiting and a 50 mile round trip). In the meantime, my left arm is swollen and aches when I stretch it. I spend a lot of time waving it in the air and clenching and unclenching my fist. (Something that is supposed to help.) I’ve tried doing it in public and while I am driving but people think I am making black power salutes at them and give me some very odd looks. I need to be a bit circumspect about this. It could lead to some nasty situations.
Side effects from the chemo are also still in evidence – swollen ankles and feet and fingernails that are becoming detached from the nail bed. No sign of hair regrowth yet.
On the positive side I had a fantastic few days in Venice. It was wonderful and I am definitely going back – soon. The wig behaved reasonably well - It got overexcited on a breezy vaporetto trip and tried to take a quick dip in a canal but I managed to stop it.
NEWS…NEWS…NEWS… I just had an e-mail from the insurance company agreeing to let me use the local therapist for MLD. Brilliant.
I didn’t get in to be zapped until 50 minutes after my scheduled time. Needless to say, I explained which way was up to the people concerned. I don’t think it will happen again!
Early days but the actual zapping bit was straightforward. Large machine is positioned by two radiographers who mutter strange numbers at each other for a few minutes and move you around in the dark with light beams being lined up on the tattoos etc. Then a minute or two of actual zapping – only noticeable by the noise the Linear Accelerator makes, and then it is off to put the bra and top back on and home we go. The biggest problem is that it takes me at least 40 mins to drive each way, which is a complete drag.
Apparently I am very likely to get a sore boob after a week to 10 days, which will last for 2-3 weeks after the therapy is complete. C’est la Guerre.
My biggest concern at the moment is getting the lymphedema in my left arm treated. My medical insurance won’t cover Manual Lymphatic Drainage Massage by any one who is not a registered nurse or certified by the HPC. As there is no category for MLD specialists in the HPC that only leaves RNs who are also MLD specialists and there aren’t any within about 25 miles of where I live. There is however a highly recommended therapist where I live so I am working on trying to get the Insurance Company to agree to use her. If not I will have to pay for treatment myself or use the NHS (many weeks of waiting and a 50 mile round trip). In the meantime, my left arm is swollen and aches when I stretch it. I spend a lot of time waving it in the air and clenching and unclenching my fist. (Something that is supposed to help.) I’ve tried doing it in public and while I am driving but people think I am making black power salutes at them and give me some very odd looks. I need to be a bit circumspect about this. It could lead to some nasty situations.
Side effects from the chemo are also still in evidence – swollen ankles and feet and fingernails that are becoming detached from the nail bed. No sign of hair regrowth yet.
On the positive side I had a fantastic few days in Venice. It was wonderful and I am definitely going back – soon. The wig behaved reasonably well - It got overexcited on a breezy vaporetto trip and tried to take a quick dip in a canal but I managed to stop it.
NEWS…NEWS…NEWS… I just had an e-mail from the insurance company agreeing to let me use the local therapist for MLD. Brilliant.
Monday, 19 October 2009
October 19 - A word or two about side effects.
Having rejoiced greatly at the end of chemo, I am now becoming somewhat fed up with the ongoing physical side effects of the whole chemo process but more specifically the Taxotere treatments.
At the moment the fingernails on my left hand are starting to part company with the nail bed and I am hoping that the process stops before I actually lose the nails. On top of that, I have put on nearly a stone over the course of the chemo sessions and the Taxotere has made this even worse because of the fluid retention effect so I feel fat and have swollen ankles and feet, not to mention my left arm which is developing lymphedema. Aaaargh! I look like a Michelin woman.
On top of that, my eyes are streaming with tears most of the time – especially outside. Makes playing golf very tricky. The medical folks all say not to worry it – the effects will go and the weight will come off in time. Typically they won’t be pinned down as to how long all this will take.
I will just have to be patient.
I had a CT scan last week to get set up for radiotherapy. Very straightforward and I now have the two tiny tattoos. You can hardly see them – definitely no street cred to be had there.
Will start checking for hair regrowth when I get back from Venice.
At the moment the fingernails on my left hand are starting to part company with the nail bed and I am hoping that the process stops before I actually lose the nails. On top of that, I have put on nearly a stone over the course of the chemo sessions and the Taxotere has made this even worse because of the fluid retention effect so I feel fat and have swollen ankles and feet, not to mention my left arm which is developing lymphedema. Aaaargh! I look like a Michelin woman.
On top of that, my eyes are streaming with tears most of the time – especially outside. Makes playing golf very tricky. The medical folks all say not to worry it – the effects will go and the weight will come off in time. Typically they won’t be pinned down as to how long all this will take.
I will just have to be patient.
I had a CT scan last week to get set up for radiotherapy. Very straightforward and I now have the two tiny tattoos. You can hardly see them – definitely no street cred to be had there.
Will start checking for hair regrowth when I get back from Venice.
Subscribe to:
Posts (Atom)
