Following Wednesday's hard hitting news, I found myself in rather a glum mood on Thursday and Friday, which wasn't too surprising really. My Onc Doctor rang on the Thursday and expressed his concern about my results, advising me that he was going to speak to my cardiologist but had cancelled my treatment......
I had an appointment for work in Southwold on Friday morning and, I will freely admit, I sobbed most of the way there.
I picked up an answer phone message when I arrived at the property I was visiting, which was from my oncology consultant. Apparently there was a "big" inter-departmental meeting about me on Friday morning and lots of people have reviewed my echocardiogram. What it is to be popular.
The result of that meeting is that they have decided that while my EF has dropped, it doesn't seem to be as bad as they first thought, and is above 50% at least, so I can continue with treatment.
I am of course delighted, but terrified in almost equal measure as things still need to improve heart wise. At least after next Thursday's session I will be half way through it.
Talk about stress though. It would be so nice just to have a quiet week, with nothing more to worry about than whether we can get the children to school and nursery on time or not.
So, I shall start again next week, hopefully on a more positive note and try to keep my terror under wraps.
Thank you all for the positive vibes and kind messages. They are hugely appreciated.
Saturday, 16 November 2013
Wednesday, 13 November 2013
First hair cut, but also some more serious news....
It isn't that slow a news day, (sadly I have more to tell you) but I thought I would give you the exciting news that finally, my hair has grown enough that it was worth getting it cut and coloured. I now look far less like I have been dragged through a hedge backwards, and look far more respectable. I have had lots of people tell me how much it suits me, but I am not convinced! For now, it will do and the fact that it is all growing back nicely and that I even have some eyebrows and eyelashes is enough.
Sadly, a seriously amazing lady that I met last year and who has inspired me throughout my treatment died last week, at the age of 30. I am still in shock actually. Last time I saw her she was eventing, despite being in immense pain. It seems to have been so quick. The funeral is next Friday, 22nd and fortunately I have been able to rearrange cover for my auction in order that I can go. Whilst I didn't know Alex that well, her attitude and ability to be positive was just astounding, and I will strive to be more like that.
However, after having an extremely long day today I am really struggling with that positive mental attitude.
I had a good session with my plastic surgeon and have, potentially, booked my reconstruction surgery for the end of May next year. This should coincide with the end of Herceptin, so my portacath can be removed at the same time.
Unfortunately, I got some news this morning which has made me feel less excited about the surgery, and more well, downhearted.
I had an echocardiogram to check my ejection fraction, as I have had several times before, only this time, we found that it has dropped to below 50%. Well, in fact it is 48%.
I don't yet know what the full ramifications are yet, but it is extremely unlikely that I will be allowed my next treatment which is scheduled for next week. I sure that I will skip one and had a six week gap but I am not sure and won't know until I see my oncologist next Wednesday. I should have seen him today after the echo, but put him back to I could see the plastic surgeon. Whoops.
I am trying not to panic. I have had 8 Herceptin drips, which is virtually half, but I am not sure how much this will alter my prognosis. I am not the first person this has happened to, nor will I be the last but I had so hoped it wouldn't happen.
Frankly it is bloody scary.
So, until I have seen my consultant next week I shall remain active, but possibly slow down the power walking a bit which is annoying as it had been going really well..... Priorities though. There's plenty of time for training later......
Sadly, a seriously amazing lady that I met last year and who has inspired me throughout my treatment died last week, at the age of 30. I am still in shock actually. Last time I saw her she was eventing, despite being in immense pain. It seems to have been so quick. The funeral is next Friday, 22nd and fortunately I have been able to rearrange cover for my auction in order that I can go. Whilst I didn't know Alex that well, her attitude and ability to be positive was just astounding, and I will strive to be more like that.
However, after having an extremely long day today I am really struggling with that positive mental attitude.
I had a good session with my plastic surgeon and have, potentially, booked my reconstruction surgery for the end of May next year. This should coincide with the end of Herceptin, so my portacath can be removed at the same time.
Unfortunately, I got some news this morning which has made me feel less excited about the surgery, and more well, downhearted.
I had an echocardiogram to check my ejection fraction, as I have had several times before, only this time, we found that it has dropped to below 50%. Well, in fact it is 48%.
I don't yet know what the full ramifications are yet, but it is extremely unlikely that I will be allowed my next treatment which is scheduled for next week. I sure that I will skip one and had a six week gap but I am not sure and won't know until I see my oncologist next Wednesday. I should have seen him today after the echo, but put him back to I could see the plastic surgeon. Whoops.
I am trying not to panic. I have had 8 Herceptin drips, which is virtually half, but I am not sure how much this will alter my prognosis. I am not the first person this has happened to, nor will I be the last but I had so hoped it wouldn't happen.
Frankly it is bloody scary.
So, until I have seen my consultant next week I shall remain active, but possibly slow down the power walking a bit which is annoying as it had been going really well..... Priorities though. There's plenty of time for training later......
Thursday, 10 October 2013
Going full circle
I should probably apologise for the lack of recent blog posts, but you're used to how sporadic I am by now, I hope!
Yesterday was a weird weird day. I had a check up with my lovely surgical consultant which was, shock horror, the first of my annual checks.
Annual.
Really.
How it can be a year since I started chemo I've no idea, which seems to be a recurring theme. Not only do I have no idea in general (or so it feels sometimes) but time marches on regardless, which is a bloody good and very timely reminder that I shouldn't just be a passenger on this journey, I should make sure I make the most of every opportunity.
Anyway, I digress.
My surgical consultant is still fab, and his sense of humour is undiminished which is a very good thing. He is happy that there are no new lumps on my remaining side and is delighted at how good my scars are, and that the use of my arm has not been affected by the lymph node removal.
We had a good long chat about the fact that my ovaries are working again (dammit) and what to do about it. We had both hoped that I would go into early menopause which would rule out the need to think about ovary removal....
Further to a chat with my oncologist recently, we decided to go down the route of genetic testing to ascertain whether I carry the BRACA hereditary cancer gene. If I do, then ovary removal/suppression would possibly be a good idea.
It was quite interesting to compare that chat with the oncologist to the one with the surgeon yesterday, as the latter was far more positive about ovary removal than the former. Perhaps it's the typical surgical approach? I don't know, but removal if the BRACA gene is present seems like a sensible option to me.
We also discussed reconstruction and secondary mastectomy, and I have been referred to the Plastic Surgery department, and to the surgeon in particular that I wanted to see, so that is good, and a positive step forward.
Whilst I am still in several minds about reconstruction I definitely want to consider all the options so we are heading in the right direction for sure.
Things have been going okay recently, but it is fair to say that my husband and I are in dire need of a holiday. The stresses of the last year are starting to come out and it is fair to say that neither of us have ever been so tired.
I have been struggling with work recently. I have very little tolerance for stupidity and annoyances, which is not always ideal when dealing with staff and the general public! So, at the moment my time in the office is flexible, which has helped a lot this week and I am starting to feel less strung out, and my attention span is also better. Still, I think a proper break away is going to be the only thing that really has a chance of helping us. Quite how to go about it I do not know. Taking my oldest child out of school will be much frowned upon, so we will have to see what can be arranged.
All in all,methinks are okay. My hair is growing well and I have hopes that my ears might be covered by Christmas!
Yesterday was a weird weird day. I had a check up with my lovely surgical consultant which was, shock horror, the first of my annual checks.
Annual.
Really.
How it can be a year since I started chemo I've no idea, which seems to be a recurring theme. Not only do I have no idea in general (or so it feels sometimes) but time marches on regardless, which is a bloody good and very timely reminder that I shouldn't just be a passenger on this journey, I should make sure I make the most of every opportunity.
Anyway, I digress.
My surgical consultant is still fab, and his sense of humour is undiminished which is a very good thing. He is happy that there are no new lumps on my remaining side and is delighted at how good my scars are, and that the use of my arm has not been affected by the lymph node removal.
We had a good long chat about the fact that my ovaries are working again (dammit) and what to do about it. We had both hoped that I would go into early menopause which would rule out the need to think about ovary removal....
Further to a chat with my oncologist recently, we decided to go down the route of genetic testing to ascertain whether I carry the BRACA hereditary cancer gene. If I do, then ovary removal/suppression would possibly be a good idea.
It was quite interesting to compare that chat with the oncologist to the one with the surgeon yesterday, as the latter was far more positive about ovary removal than the former. Perhaps it's the typical surgical approach? I don't know, but removal if the BRACA gene is present seems like a sensible option to me.
We also discussed reconstruction and secondary mastectomy, and I have been referred to the Plastic Surgery department, and to the surgeon in particular that I wanted to see, so that is good, and a positive step forward.
Whilst I am still in several minds about reconstruction I definitely want to consider all the options so we are heading in the right direction for sure.
Things have been going okay recently, but it is fair to say that my husband and I are in dire need of a holiday. The stresses of the last year are starting to come out and it is fair to say that neither of us have ever been so tired.
I have been struggling with work recently. I have very little tolerance for stupidity and annoyances, which is not always ideal when dealing with staff and the general public! So, at the moment my time in the office is flexible, which has helped a lot this week and I am starting to feel less strung out, and my attention span is also better. Still, I think a proper break away is going to be the only thing that really has a chance of helping us. Quite how to go about it I do not know. Taking my oldest child out of school will be much frowned upon, so we will have to see what can be arranged.
All in all,methinks are okay. My hair is growing well and I have hopes that my ears might be covered by Christmas!
Monday, 15 July 2013
Seriously, where does time go?
Life in the fast lane makes time go faster I suppose! We certainly have been extremely busy over the last few weeks.
I had the privilege of going to Claire's funeral, which was horribly sad, but one of the most touching and uplifting services I have ever been to. It was standing room only at the crematorium and a fitting tribute to such a wonderful woman.
I survived my second Herceptin, which went fine despite the queries and debates over time needed to give the infusion! Hopefully by the time I have my third one, which is Thursday this week, all the departments of the hospital that have a say in my care will have decided how long it will take. I wasn't too worried about having to sit down for 3 hrs last time as I had just sent two days at our county show with my daughter and her pony, so I really needed the rest!
We have also been on holiday to France for two weeks, which was lovely if rather hot! The children had a lovely time and things went quite smoothly on the whole, apart from the trip back. We crossed France with very few issues, but on returning to England were met with the chaos that is the M25 and it took 6 hours to get back from Portsmouth to Norwich.... still, a change is as good as a rest, and we have stocked up the wine rack somewhat!
Rather incredibly, I note from my diary that I am approaching an anniversary of sorts. A year ago I went to the doctor for what I hoped would be a reassuring chat, and on 1st August I found out that I would have to have a mastectomy, although whether I had "proper" cancer was still unknown.
It is truly scary how much life has changed over the last 12 months. In some ways it has changed for the better, but on the whole I feel that I am nearly unrecognisable, and not just physically!
I'm not sure how I feel about this anniversary, and not sure how I'm meant to feel about it either. Happy to be alive obviously, but I am still so confused as to how to live life to try to avoid this happening again that sometimes I feel totally swamped. Tired. I certainly feel tired and drained by it all.
Anyway, now we're back from holiday I'm going to throw myself into organising the charity auction which, no doubt you'll hear all about in due course!
For now though, I really think I ought to go to bed. It has taken me forever to write this rather short and probably boring post, and I think I ought to at least attempt some sleep before my youngest decides it is time for a "great big cuddle", which is one of his favorite phrases at the moment! Just as well he is so cute.....
I had the privilege of going to Claire's funeral, which was horribly sad, but one of the most touching and uplifting services I have ever been to. It was standing room only at the crematorium and a fitting tribute to such a wonderful woman.
I survived my second Herceptin, which went fine despite the queries and debates over time needed to give the infusion! Hopefully by the time I have my third one, which is Thursday this week, all the departments of the hospital that have a say in my care will have decided how long it will take. I wasn't too worried about having to sit down for 3 hrs last time as I had just sent two days at our county show with my daughter and her pony, so I really needed the rest!
We have also been on holiday to France for two weeks, which was lovely if rather hot! The children had a lovely time and things went quite smoothly on the whole, apart from the trip back. We crossed France with very few issues, but on returning to England were met with the chaos that is the M25 and it took 6 hours to get back from Portsmouth to Norwich.... still, a change is as good as a rest, and we have stocked up the wine rack somewhat!
Rather incredibly, I note from my diary that I am approaching an anniversary of sorts. A year ago I went to the doctor for what I hoped would be a reassuring chat, and on 1st August I found out that I would have to have a mastectomy, although whether I had "proper" cancer was still unknown.
It is truly scary how much life has changed over the last 12 months. In some ways it has changed for the better, but on the whole I feel that I am nearly unrecognisable, and not just physically!
I'm not sure how I feel about this anniversary, and not sure how I'm meant to feel about it either. Happy to be alive obviously, but I am still so confused as to how to live life to try to avoid this happening again that sometimes I feel totally swamped. Tired. I certainly feel tired and drained by it all.
Anyway, now we're back from holiday I'm going to throw myself into organising the charity auction which, no doubt you'll hear all about in due course!
For now though, I really think I ought to go to bed. It has taken me forever to write this rather short and probably boring post, and I think I ought to at least attempt some sleep before my youngest decides it is time for a "great big cuddle", which is one of his favorite phrases at the moment! Just as well he is so cute.....
Sunday, 9 June 2013
So, Herceptin
Didn't kill me. Well, not the first session anyway.
Sorry, black humour kicking in.
Other than taking ages (2.5 hrs versus the 1hr for most patients - to make sure it didn't upset my heart), and making my blood pressure drop a bit, it was okay.
Much relief. As you all know, I was as nervous as an extremely nervous thing, and shed a few tears before I was plugged in, but it was okay.
Whilst sitting there, I realised that yet another person I know is having chemo - the lovely lady who runs our local flower shop. The real bastard is that her husband died only 18mths ago. Effing hell. How can one person deserve all that?
I'll add it to the list of complaints.
On the whole, we've had a lovely weekend catching up with friends, and doing lots of pony riding. We've got a big show coming up with our newest acquisition so goodness knows, we need the practice!
Keeping positive has been hard this week but we keep plugging onwards. Dark thoughts in a box. In a cupboard. Under the stairs.
To quote a wonderful woman, Fuck fucking cancer.
Sorry, black humour kicking in.
Other than taking ages (2.5 hrs versus the 1hr for most patients - to make sure it didn't upset my heart), and making my blood pressure drop a bit, it was okay.
Much relief. As you all know, I was as nervous as an extremely nervous thing, and shed a few tears before I was plugged in, but it was okay.
Whilst sitting there, I realised that yet another person I know is having chemo - the lovely lady who runs our local flower shop. The real bastard is that her husband died only 18mths ago. Effing hell. How can one person deserve all that?
I'll add it to the list of complaints.
On the whole, we've had a lovely weekend catching up with friends, and doing lots of pony riding. We've got a big show coming up with our newest acquisition so goodness knows, we need the practice!
Keeping positive has been hard this week but we keep plugging onwards. Dark thoughts in a box. In a cupboard. Under the stairs.
To quote a wonderful woman, Fuck fucking cancer.
Saturday, 8 June 2013
Rest in peace Claire
Today the world lost an amazing person and the heavens gained another star.
Claire, you have been so brave and strong, and showed amazing grace throughout your journey which, in itself was far far to short.
Thank you for everything. I will never forget you.
R xx
Claire, you have been so brave and strong, and showed amazing grace throughout your journey which, in itself was far far to short.
Thank you for everything. I will never forget you.
R xx
Wednesday, 5 June 2013
So who's in charge of the universe, anyway?
I'd like to know, as I have a complaint I'd like to make. Well, actually, several complaints.
I got the awful news yesterday that a friend of mine, Claire, who has been fighting bowel cancer for the 2nd time is losing her fight and is slipping away. She has been incredibly kind to me over the last 9 months, offering help and support despite her own battles and I know that she has done the same for others too.
It's such a stupid thing to say, but life is just so so cruel and unfair, and I'm really beginning to get angry about it. I know it's pointless, but still, I'm fuming inside.
Yesterday was also the day that a very good friend's friend started his treatment for cancer. They have a son who is a similar age to my youngest, and again, I just can't get get my head around the unfairness of it all.
Cancer shouldn't happen to nice people, but it does, and I hate it. I hate feeling powerless and out of control, I hate not knowing what minute choices in my life might make me more or less likely to get it again, I hate the fear that I feel for myself and my friends, my children, and my family.
God and I haven't spoken for a while, not properly, and whilst I have never been a hugely religious person I have always felt some comfort from going to church and all that entails. I've even said a few prayers at home, but at the moment, the words won't come. Everywhere I look, bad things seem to be happening to nice people and I'm struggling with it.
It doesn't help that I'm starting Herceptin tomorrow and I'm bloody scared. There's a huge long list of side effects, but the two I'm really worried about are heart issues and joint pain. Actually, I can handle pain. It's my heart I'm most worried about.
I know that they wouldn't let me have the drug if they thought the chances of me having a problem were high, but I wasn't allowed into a clinical trial in case my ejection fraction drops too low (which effectively means that they only let the healthiest people in) - if that had happened they would have had to have taken me off it and I wouldn't have been allowed any more, so better to stay out of the trial and have the drug for as long as I can and hope nothing goes wrong.
I really hope I'm worrying about nothing. I only know two people who have had Herceptin. One is fine, and the other had heart issues and had to stop after 9 sessions, and she had no prior heart issues.
It's incredibly selfish I know, bearing in mind that Claire is lying in her hospital bed knowing that she can do no more, but still, I'm scared.
I have to get a grip, because I need to be brave not just for myself, but everyone else, so I'm trying to think about what Claire would say or do. I'm pretty sure that she'd be thinking "Fuck Cancer" and put a big smile on her face regardless.
Fingers crossed I can do just that.
I got the awful news yesterday that a friend of mine, Claire, who has been fighting bowel cancer for the 2nd time is losing her fight and is slipping away. She has been incredibly kind to me over the last 9 months, offering help and support despite her own battles and I know that she has done the same for others too.
It's such a stupid thing to say, but life is just so so cruel and unfair, and I'm really beginning to get angry about it. I know it's pointless, but still, I'm fuming inside.
Yesterday was also the day that a very good friend's friend started his treatment for cancer. They have a son who is a similar age to my youngest, and again, I just can't get get my head around the unfairness of it all.
Cancer shouldn't happen to nice people, but it does, and I hate it. I hate feeling powerless and out of control, I hate not knowing what minute choices in my life might make me more or less likely to get it again, I hate the fear that I feel for myself and my friends, my children, and my family.
God and I haven't spoken for a while, not properly, and whilst I have never been a hugely religious person I have always felt some comfort from going to church and all that entails. I've even said a few prayers at home, but at the moment, the words won't come. Everywhere I look, bad things seem to be happening to nice people and I'm struggling with it.
It doesn't help that I'm starting Herceptin tomorrow and I'm bloody scared. There's a huge long list of side effects, but the two I'm really worried about are heart issues and joint pain. Actually, I can handle pain. It's my heart I'm most worried about.
I know that they wouldn't let me have the drug if they thought the chances of me having a problem were high, but I wasn't allowed into a clinical trial in case my ejection fraction drops too low (which effectively means that they only let the healthiest people in) - if that had happened they would have had to have taken me off it and I wouldn't have been allowed any more, so better to stay out of the trial and have the drug for as long as I can and hope nothing goes wrong.
I really hope I'm worrying about nothing. I only know two people who have had Herceptin. One is fine, and the other had heart issues and had to stop after 9 sessions, and she had no prior heart issues.
It's incredibly selfish I know, bearing in mind that Claire is lying in her hospital bed knowing that she can do no more, but still, I'm scared.
I have to get a grip, because I need to be brave not just for myself, but everyone else, so I'm trying to think about what Claire would say or do. I'm pretty sure that she'd be thinking "Fuck Cancer" and put a big smile on her face regardless.
Fingers crossed I can do just that.
Subscribe to:
Posts (Atom)