A lovely lady from the online cancer forum that I chat on has arranged for me to have free tickets to see Faithless in Manchester! How amazing is that?
She had read the blog, seen that they were on my list of things I'd like to do, and as she works for the venue is able to get staff complimentaries.
I have the tickets in my sticky mitts, and am so very grateful for her kindness in arranging this.
The power of the internet, and the kindness of strangers is a wonderful thing.
Wednesday, November 17, 2010
Herceptin at home
I had my first "Herceptin at home" experience yesterday. After being told that this would happen, I hadn't actually been contacted by anyone to find out what was going on. Coincidentally, while I was playing telephone tag with the contact at Velindre hospital, the Bupa coordinator left a message on my phone about it. She had apparently been phoning me regularly but not getting an answer (indeed: I work, and am not waiting by my mobile phone 24 hours a day) - and not leaving a message!!! Funnily enough, I had no idea that it was her or I would have called her back. Apparently, she doesn't like to leave a message because of patient confidentiality. She could have said something like "This is Cathy from Bupa, please call me back on xxxx" couldn't she? Sigh.
Anyway, it was all arranged, and I received two calls from a more local coordinator and the actual nurse on Monday evening (they were brave enough to leave messages, thank goodness!) to confirm it was all set. The drugs will be arriving at 8am, and the nurse will arrive at 8.30am to get cracking. Great.
You can probably tell from my tone that it didn't go quite to plan! Sonia the nurse did indeed arrive on time, but the drugs did not. In fact they didn't arrive until gone 11am, so it was past 1pm before it was all done. Sonia was not happy - she had not been informed there was a delay, and the delay to my treatment also caused a delay to her next appointment and a couple of wasted hours. I had to call into work, as I was now not going to be able to go in and cover my sessions on the Enquiry Desk. Luckily they were able to arrange cover, and I worked before and after the treatment from home. Sonia was able to do paperwork while we waited, as well as make numerous calls to people to see what had gone wrong with the delivery. We never did quite get to the bottom of it, but she said she would put in a formal complaint.
Apart from that, having the treatment at home was absolutely fine. She had forgotten to bring her drip stand so we improvised with a coat hanger over the kitchen door, and didn't bother with the pump. Apparently, it was unusual to adminster it in kitchen/diner as most people do it in front of the telly - but I wanted to do some work as it was done, so the kitchen was better for that!!
Sonia was really lovely and easy to talk to, and she has arranged for my next treatment to be on a Wednesday, which is much better from a work point of view. Let's just hope the drugs arrive on time next time!!!
Anyway, it was all arranged, and I received two calls from a more local coordinator and the actual nurse on Monday evening (they were brave enough to leave messages, thank goodness!) to confirm it was all set. The drugs will be arriving at 8am, and the nurse will arrive at 8.30am to get cracking. Great.
You can probably tell from my tone that it didn't go quite to plan! Sonia the nurse did indeed arrive on time, but the drugs did not. In fact they didn't arrive until gone 11am, so it was past 1pm before it was all done. Sonia was not happy - she had not been informed there was a delay, and the delay to my treatment also caused a delay to her next appointment and a couple of wasted hours. I had to call into work, as I was now not going to be able to go in and cover my sessions on the Enquiry Desk. Luckily they were able to arrange cover, and I worked before and after the treatment from home. Sonia was able to do paperwork while we waited, as well as make numerous calls to people to see what had gone wrong with the delivery. We never did quite get to the bottom of it, but she said she would put in a formal complaint.
Apart from that, having the treatment at home was absolutely fine. She had forgotten to bring her drip stand so we improvised with a coat hanger over the kitchen door, and didn't bother with the pump. Apparently, it was unusual to adminster it in kitchen/diner as most people do it in front of the telly - but I wanted to do some work as it was done, so the kitchen was better for that!!
Sonia was really lovely and easy to talk to, and she has arranged for my next treatment to be on a Wednesday, which is much better from a work point of view. Let's just hope the drugs arrive on time next time!!!
Delayed results
Apologies again for having neglected my blog. I am sure everyone will have stopped checking for updates now!!!
Anyway, I was supposed to have seen the surgeon, Mr Ghosh, on 5th November but received a letter cancelling that appointment. I had to call to make another. And the next date they can do? 3rd December! This is rubbish - I don't get the results of my mammogram until then, thats a full SEVEN weeks of waiting!! I know that I should call and see if I can get the results over the phone, but I admit that I am burying my head in the sand a little and working on the assumption that if there was anything to worry about, they would not leave it for 7 weeks before telling me. I'm pretty sure they would call me back sooner if there was anything to worry about.... wouldn't they?
Anyway, I was supposed to have seen the surgeon, Mr Ghosh, on 5th November but received a letter cancelling that appointment. I had to call to make another. And the next date they can do? 3rd December! This is rubbish - I don't get the results of my mammogram until then, thats a full SEVEN weeks of waiting!! I know that I should call and see if I can get the results over the phone, but I admit that I am burying my head in the sand a little and working on the assumption that if there was anything to worry about, they would not leave it for 7 weeks before telling me. I'm pretty sure they would call me back sooner if there was anything to worry about.... wouldn't they?
Thursday, October 14, 2010
Squished and Squashed
Today was my first annual mammogram. I won't lie to you, it is a touch uncomfortable. Having your boob sandwiched between two blocks of perspex as tightly as possible, while you hug the machine and have your face pressed against the cold metal, while they hand tighten the screws to get it that little bit closer, isn't the most pleasant way to spend an afternoon, but in reality it only lasts seconds. And yes, you do want them to get it right and get as much flesh in there as they can, so you get the most thorough check possible.
I walked into the hospital with my usual confident stride, read some exciting papers about the Browne Review while I waited to be called, and was happily chatting to to radiography nurse as I undressed and got into position. It was only as I was leaving and she commented that "the first one is always the worst" that I realised that it was and shed a couple of tears. I could put the possibility that the scan might discover more cancer to the back of my mind before. Now that they have taken the image, I can't quite so much. It's quite scary. I don't get to see Mr Ghosh for the results until 5th November so I asked whether if they found something, would they call me back sooner? I can't imagine them leaving it more than 2 weeks, butI may phone next week to ask if there are any preliminary results...
In other news, last week I had my 7th Herceptin treatment. As before, it was a loading dose given at Velindre, and I had no reaction to it, so just spent the day reading (work stuff) and relaxing. Next one on the 26th October, and then the rest from home. I have yet to be contacted by Bupa to see how that all works, but am still living in hope that I can have the rest in the evening at home.
This last couple of weeks have been very hectic. We are still working on getting Greg's house ready for sale. It shouldn't take much more now. Some grouting, bathroom washbasin, wallpaper and painting to do, plus a few smaller bits and bobs, but the bulk of the work is done now.
This week, ma and pa visited on their way to Devon (Monday), then we went to a Groove Armada gig in Bristol (Tuesday), then worked late (Wednesday) and today was boob-squashing day. I've also had my house valued today: not worth quite as much as I'd like, but its not too far off my estimates. Will get some small things done like painting the kitchen ceiling (it is still has raw plaster where we had the wall taken down!) and then get it on the market, so that we are ready to buy somewhere new... Exciting!
More decorating at Greg's at the weekend. Hopefully a final push...
I walked into the hospital with my usual confident stride, read some exciting papers about the Browne Review while I waited to be called, and was happily chatting to to radiography nurse as I undressed and got into position. It was only as I was leaving and she commented that "the first one is always the worst" that I realised that it was and shed a couple of tears. I could put the possibility that the scan might discover more cancer to the back of my mind before. Now that they have taken the image, I can't quite so much. It's quite scary. I don't get to see Mr Ghosh for the results until 5th November so I asked whether if they found something, would they call me back sooner? I can't imagine them leaving it more than 2 weeks, butI may phone next week to ask if there are any preliminary results...
In other news, last week I had my 7th Herceptin treatment. As before, it was a loading dose given at Velindre, and I had no reaction to it, so just spent the day reading (work stuff) and relaxing. Next one on the 26th October, and then the rest from home. I have yet to be contacted by Bupa to see how that all works, but am still living in hope that I can have the rest in the evening at home.
This last couple of weeks have been very hectic. We are still working on getting Greg's house ready for sale. It shouldn't take much more now. Some grouting, bathroom washbasin, wallpaper and painting to do, plus a few smaller bits and bobs, but the bulk of the work is done now.
This week, ma and pa visited on their way to Devon (Monday), then we went to a Groove Armada gig in Bristol (Tuesday), then worked late (Wednesday) and today was boob-squashing day. I've also had my house valued today: not worth quite as much as I'd like, but its not too far off my estimates. Will get some small things done like painting the kitchen ceiling (it is still has raw plaster where we had the wall taken down!) and then get it on the market, so that we are ready to buy somewhere new... Exciting!
More decorating at Greg's at the weekend. Hopefully a final push...
Tuesday, September 21, 2010
One year. Done.
Today, 21st September 2010, is the first anniversary of my mastectomy. Some might expect me to be sad about that, but I am not. What's done is done, and I can live with it quite easily. No psychological damage, my fella still fancies me, I've adapted my clothes to fit. Doesn't mean to say I won't have a reconstruction when I can, but it isn't causing me any day to day issues.
If anything, I want to celebrate that I have made it to the first anniversary and I feel absolutely great. I have withstood the treatment reasonably well, my hair is coming back thick and fast (literally) and so far (keeping everything crossed here) the cancer has been beaten.
I have an appointment for my now annual mammogram check on 5th October, followed by a meeting with the surgeon (to discuss results, I guess) on 4th November. Not brilliant that those dates are a month apart, but I am confident that if there is anything worrying to see on the scan that I would get to see him a bit sooner!
The other reason to celebrate today, is that I saw Dr Iqbal for the results of my latest heart scan, which I had yesterday. Initially, the result was not available on the screen when he looked for it. They had promised me that an appointment the day before the clinic would be OK, but obviously they hadn't quite got around to updating the system yet... My appointment with Dr Iqbal was at 5pm, so he rang and rang (then got his registrar to ring) and there was no answer to be able to get the "unvalidated" result. Then, Magical Michelle rang - and of course, someone answered, and they gave the result. I now have an ejection fraction of 53%! Yay! So this means Herceptin treatment can recommence.
I had 6 treatments out of 18 before it got stopped, so now have another 12 to have. The bad news is that I have to have two loading doses again, which mean a day at Velindre Hospital each time to check there is no allergic reaction. The good, nay, BRILLIANT news is that they are now able to offer the remaining treatments from home! Yes, indeed. Bupa have been subcontracted to deliver treatment from your own home. So I guess they will rock up with a drip, the medication and a nurse and hook you up in your living room! Apparently, this is saving the hospital a lot of space and time, as there is less of a crush in the waiting and treatment rooms. For me, what I am hoping it means - and Greg shakes his head in despair at me - is that I can get a more convenient appointment time and still do a full day at work on treatment days. Seeing as it doesn't cause any ill side effects (apart from giving you a dodgy heart, for which I had no symptoms), I don't see this as a problem.
12 more treatments at 3 weekly intervals will take me another 9 months. So if they start in October, they'll be finished in June 2011. So, still a long way to go.
The other sad news, is that Dr Iqbal is definitely leaving, so this may have been the last time that I will see him. I thanked him for everything he has done for me. I also quizzed him on what his plan for us trying again for a baby would have been. The detail of the plan is this:
- 9 more months of herceptin (until June 2011)
- then 6 more months on zoladex (December 2011)
- then come off the zoladex and wait for my periods to come back (sometime early 2012)
- then come off tamoxifen and try and get preggers (2012...)
Lets hope we get that far without any more hiccups. I'll be 39 by then.... eek!!
But I am happy.
p.s. Photo courtesy of Jenny Grodzicka - sorry, I should have asked permission before I stole it! xx
If anything, I want to celebrate that I have made it to the first anniversary and I feel absolutely great. I have withstood the treatment reasonably well, my hair is coming back thick and fast (literally) and so far (keeping everything crossed here) the cancer has been beaten.
I have an appointment for my now annual mammogram check on 5th October, followed by a meeting with the surgeon (to discuss results, I guess) on 4th November. Not brilliant that those dates are a month apart, but I am confident that if there is anything worrying to see on the scan that I would get to see him a bit sooner!
The other reason to celebrate today, is that I saw Dr Iqbal for the results of my latest heart scan, which I had yesterday. Initially, the result was not available on the screen when he looked for it. They had promised me that an appointment the day before the clinic would be OK, but obviously they hadn't quite got around to updating the system yet... My appointment with Dr Iqbal was at 5pm, so he rang and rang (then got his registrar to ring) and there was no answer to be able to get the "unvalidated" result. Then, Magical Michelle rang - and of course, someone answered, and they gave the result. I now have an ejection fraction of 53%! Yay! So this means Herceptin treatment can recommence.
I had 6 treatments out of 18 before it got stopped, so now have another 12 to have. The bad news is that I have to have two loading doses again, which mean a day at Velindre Hospital each time to check there is no allergic reaction. The good, nay, BRILLIANT news is that they are now able to offer the remaining treatments from home! Yes, indeed. Bupa have been subcontracted to deliver treatment from your own home. So I guess they will rock up with a drip, the medication and a nurse and hook you up in your living room! Apparently, this is saving the hospital a lot of space and time, as there is less of a crush in the waiting and treatment rooms. For me, what I am hoping it means - and Greg shakes his head in despair at me - is that I can get a more convenient appointment time and still do a full day at work on treatment days. Seeing as it doesn't cause any ill side effects (apart from giving you a dodgy heart, for which I had no symptoms), I don't see this as a problem.
12 more treatments at 3 weekly intervals will take me another 9 months. So if they start in October, they'll be finished in June 2011. So, still a long way to go.
The other sad news, is that Dr Iqbal is definitely leaving, so this may have been the last time that I will see him. I thanked him for everything he has done for me. I also quizzed him on what his plan for us trying again for a baby would have been. The detail of the plan is this:
- 9 more months of herceptin (until June 2011)
- then 6 more months on zoladex (December 2011)
- then come off the zoladex and wait for my periods to come back (sometime early 2012)
- then come off tamoxifen and try and get preggers (2012...)
Lets hope we get that far without any more hiccups. I'll be 39 by then.... eek!!
But I am happy.
p.s. Photo courtesy of Jenny Grodzicka - sorry, I should have asked permission before I stole it! xx
Sunday, August 15, 2010
I've had a haircut!
Actually, I had it cut last Tuesday but haven't had time to update here since then.
It actually looks as though it is meant to be this short now, rather than all fluffy around the edges!! And it has made it look a bit less grey, which can't be bad.
Yay!
It actually looks as though it is meant to be this short now, rather than all fluffy around the edges!! And it has made it look a bit less grey, which can't be bad.
Yay!
Monday, August 9, 2010
Busy busy bee
So, just to explain why I have been far too busy to update the blog in the past month:
- Walked the Walk
- A week in Mallorca and some nice sunshine
- Visit to my brother and family to wish Ella a happy 10th birthday
- Attended a conference at Bicton College in Devon
- Camping with a big group of friends
- Seeing The Automatic at Monmouth Festival (free gigs!!)
- Being Jane Austen for a day (Leanne's Hen do)
- Mesmerised by the Monmouth Balloon Glow
- Decorating Greg's house ready for sale
- Securing a job. Yes, I have a job, but it will be all change soon. I needed to get a new role - the right role - in our senior restructuring. I did it. Phew.
Have a heart
You may recall that my Herceptin treatment has been suspended because my MUGA heart scan result was not what it should be. Well, I have been on the perindopril tablets since then and my blood pressure is down - the last reading I had, it was at 115/79 which is nice and normal. However, I had another scan and my % (of blood being pumped through the left ventricle) is not quite back where it needs to be. Normal is 50-70%, my first 'bad' reading was 44% and my latest reading is 48%. So its going in the right direction, but it isn't quite there yet.
Dr Iqbal mentioned that I ought to increase my perindopril dose between now and the next heart scan, but although I saw my GP on the same day, Dr Iqbal hadn't given specific instructions to we decided to wait until the GP recieved a letter. This arrived today, so they have phoned and told me to double my dose up to 8mg a day, and if I suffer any low blood pressure symptoms (dizziness, excessive tiredness), to toddle in and have a BP check. So tomorrow, we start on the higher dose....
The next heart scan is in the middle of September, followed by another appointment with Dr Iqbal. It will be my last one with him, however, as he is apparently leaving. I didn't get the chance to ask where he was going, but I will miss him. He has been a champion for my fertility issues, so I will make sure I will ask him what his longer term plan would have been for me, so that I can make sure it happens. I will miss him and his funny ways!!
Dr Iqbal mentioned that I ought to increase my perindopril dose between now and the next heart scan, but although I saw my GP on the same day, Dr Iqbal hadn't given specific instructions to we decided to wait until the GP recieved a letter. This arrived today, so they have phoned and told me to double my dose up to 8mg a day, and if I suffer any low blood pressure symptoms (dizziness, excessive tiredness), to toddle in and have a BP check. So tomorrow, we start on the higher dose....
The next heart scan is in the middle of September, followed by another appointment with Dr Iqbal. It will be my last one with him, however, as he is apparently leaving. I didn't get the chance to ask where he was going, but I will miss him. He has been a champion for my fertility issues, so I will make sure I will ask him what his longer term plan would have been for me, so that I can make sure it happens. I will miss him and his funny ways!!
We Walked the Walk
Most remiss of me, not to update on here about the fantastic walk that my friends and I did on 3rd July.
"Team Flora" consisted of me, Greg, Hannah, Charlotte, Gail and Yvonne - and don't we all just look fine in our bras?
We had great fun decorating them - quite a few of us (me included) specially designed them to cover our wobbly tummies!
We walked 13 miles across Bristol - from Ashton Court to the harbour and back again, via busy Park Street and White Ladies Road, and escorted by policemen who helped us cross roads safely and a volunteer attendant at every mile. Every single one of them - without fail - gave Greg a compliment as we marched past with his windmills spinning gaily!
Greg decided that he wanted to march on at speed, so we lost the other 4 quite quickly (sorry girls) and trudged on apace. We made a strategic decision not to stop at the first loo block, wisely deciding that those that were stopping would give us a bit of extra space if we pressed onwards, which it did. We had a comfort break at the next marker, mile 7, and grabbed more water to keep us hydrated in the warm sun. At mile 10, Greg felt his thighs go numb, and the last couple of miles were fairly steeply downhill which came as a shock to our legs as it felt as though the rest of the course had all been uphill! Greg was a broken man at the end, but was pleased that we had made it in under 4 hours (3hours 45mins to be precise), and was back to normal after a couple of days rest!
Added up, we managed to raise over £1500 for Walk the Walk, an outstanding achievement. Thank you so much to my amazing friends, and to everyone who donated. We couldn't have done it without you.
"Team Flora" consisted of me, Greg, Hannah, Charlotte, Gail and Yvonne - and don't we all just look fine in our bras?
We had great fun decorating them - quite a few of us (me included) specially designed them to cover our wobbly tummies!
I was most impressed that everyone kept starting sentences with "when we do this next year..." - so anyone else want to join us?
Added up, we managed to raise over £1500 for Walk the Walk, an outstanding achievement. Thank you so much to my amazing friends, and to everyone who donated. We couldn't have done it without you.
I was just unlucky!
Yes, you guessed it - I got the results of the genetic testing that I had done in March (see March 17th blog) and I have none of the so-far discovered gene mutations known to cause breast cancer. So I was just unlucky, I guess.
Or I have a gene mutation that hasn't yet been discovered. Mum and I have both given our blood samples to another clinical trial which is continuing to scour the human genome for any other faulty genes, so there is always a possibility there is something there.
For now, though, what this means is that I will not be proffering my left boob to go under the knife, and I won't be worrying overly about ovarian cancer or opting for an oophorectomy (I love that word!!!). My neices (and nephew) don't have to be any more worried than anyone else when they get older. Phew.
Its a relief, I can tell you.
Or I have a gene mutation that hasn't yet been discovered. Mum and I have both given our blood samples to another clinical trial which is continuing to scour the human genome for any other faulty genes, so there is always a possibility there is something there.
For now, though, what this means is that I will not be proffering my left boob to go under the knife, and I won't be worrying overly about ovarian cancer or opting for an oophorectomy (I love that word!!!). My neices (and nephew) don't have to be any more worried than anyone else when they get older. Phew.
Its a relief, I can tell you.
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