Just had my second dose of Docetaxel this morning - no dramas - they all happened yesterday!!
Jo came round to take my bloods - just a routine pre-treatment procedure...or so we all thought....but my red blood count was low so I'm a bit anaemic. I was ok for the chemo as my white cells and the infection fighting neutrophils are ok (not great but good enough) but Dr B thought I should have a blood transfusion. Unfortunately, that takes at least a day to sort with cross-matching the blood so that is now scheduled for tomorrow and it is a bit of a slow process. I'm very impressed by the communication between everybody - Dr B, Nicky the nurse and Pat, Dr B's secretary. They all knew that we were due to go on holiday today so were really trying to move things on - Nicky thought that because I haven't been symptomatic of an anaemic (breathlessness and unusual tiredness) I might get away without a transfusion but Dr B is concerned that I might deteriorate while I'm away and, apart from feeling knackered, we will be a long way from any health services so he doesn't want to take any chances. I wouldn't consider not going with what Dr B says - we trust him implicitly. I was so surprised because I have been feeing so well although the first thing Martin said to me yesterday morning was that I looked a bit yellow!
Although, we're gutted we totally understand that this is what happens, so no real complaints. We decided that Martin should still drive up to Edinburgh today with the girls (his and mine) - they've just left - and I will fly up tomorrow evening re-energised and revitalised!! I'm not sure that there was any room in the car for me anyway! We have tickets for Fringe shows tomorrow, all of which have had rave reviews, so it would be a shame for us all to miss them.
The Disability Living Allowance people rang in the morning and asked about my outdoor mobility to assess me for benefits - I didn't dare say that I went for a bike ride on Sunday and we are planning a 6-mile walk on holiday to visit where my Dad's ashes have been scattered. I'll be more considerate when my time comes!!!
The good news is I'm back on the steroids for a few days..so I've got a few extra hours in my day!! Oh joy!!
So, assuming all goes well tomorrow, I'll be off until 2nd Sept and will catch up when we're back.
Vicky x
Tuesday, 21 August 2007
Thursday, 16 August 2007
Five days off
Five days without drugs...not that I've been having a bad time with the oral chemotherapy but it feels good not to have to think about it. I'll be back on the steroids for three days from Monday and then round 2 starts on Tuesday. We've got Nicky the nurse booked in to come round early on Tuesday and do the deed and then we're planning to jump in the car and drive up to Edinburgh for a few days at the Fringe and then a week in a cottage on the west coast with Anna, Ed, Ewan and Caitlin and lots of games. Hopefully, I'll feel as well as I did last time. It'll be good to spend some time with Martin - at the moment he comes home from work, we eat and I go to bed!
We saw Dr Braybrooke on Tuesday - he's very pleased with the way that I'm tolerating the treatment. My reward is that he's now thinking that we might go for 6 or even 8 rounds of this combination although the scans after round 3 or 4 will dictate that. He is confident that I will show a good response. When I told him that we had a holiday booked that clashes with treatment number 5, he said that we could delay the treatment by a week. I'm liking him more and more!!
I've been a bit paranoid that three weeks of steroids had made me put on weight but I was feeling confident that I'd got away with it until I came downstairs the other morning and Iona was staring at me. When I asked what she was looking at, she said, 'Your face looks even rounder!' The truth hurts!! She and I have been having a ball this week - Iona has had a riding lesson, we've been to the cinema, seen lots of friends and last night we went to Scooby Doo Live on Stage. I'd forgotten how much I fancied Shaggy when I was younger!!
Not going to work is great but I've had to set myself a few rules - no daytime TV unless it's cricket, Rugby World Cup or any other good sport and no trashy magazines unless I'm feeling rubbish. I think I need to add internet shopping to that list - even the postie has commented on the number of parcels being delivered!! Well, it is Iona's birthday in 10 days and it was the Fat Face sale!!!
So, all is well with us.
Vicky xx
We saw Dr Braybrooke on Tuesday - he's very pleased with the way that I'm tolerating the treatment. My reward is that he's now thinking that we might go for 6 or even 8 rounds of this combination although the scans after round 3 or 4 will dictate that. He is confident that I will show a good response. When I told him that we had a holiday booked that clashes with treatment number 5, he said that we could delay the treatment by a week. I'm liking him more and more!!
I've been a bit paranoid that three weeks of steroids had made me put on weight but I was feeling confident that I'd got away with it until I came downstairs the other morning and Iona was staring at me. When I asked what she was looking at, she said, 'Your face looks even rounder!' The truth hurts!! She and I have been having a ball this week - Iona has had a riding lesson, we've been to the cinema, seen lots of friends and last night we went to Scooby Doo Live on Stage. I'd forgotten how much I fancied Shaggy when I was younger!!
Not going to work is great but I've had to set myself a few rules - no daytime TV unless it's cricket, Rugby World Cup or any other good sport and no trashy magazines unless I'm feeling rubbish. I think I need to add internet shopping to that list - even the postie has commented on the number of parcels being delivered!! Well, it is Iona's birthday in 10 days and it was the Fat Face sale!!!
So, all is well with us.
Vicky xx
Tuesday, 7 August 2007
No more bad hair days..
One week on and I still feel ok - not 100% - I feel a bit jaded and glazed but it's not stopping me doing much at the moment. Iona is at my Mum's until Friday and is having lots of fun with her cousins. We did a handover at her grandparents' house in Lancashire. Helen and Andy helped us with the transport logistics and then helped us get hooked on Nintendo Wii.....ours has arrived this morning so games night for us tonight!!
Not only did we leave Iona up north but I left my hair there too!! After a couple of days of excrutiating itchiness and soreness, my hair started to come out in clumps so Helen clipped it all off. It was quite traumatic but quite a relief when it was all off. So, I'm getting used to my new look - I've got a supply of bandanas and Martin and I went to Cardiff yesterday to choose a wig. Hopefully, it will arrive in the next couple of days..in time for the wedding this weekend. I'll post a picture when it comes!!
Other than that, yesterday, I met with Lynne from St Peters' Hospice - interesting to find out what they do but something I can park for a while. She had some good ideas about stuff to do with Iona and top of her birthday list now is a digital camera so that she and I can make a holiday diary when we go up to Scotland later this month. Martin and I also had a very positive meeting at the solicitors - good to get more stuff sorted - and I had a lovely night out with Karen and Kate.
Not only did we leave Iona up north but I left my hair there too!! After a couple of days of excrutiating itchiness and soreness, my hair started to come out in clumps so Helen clipped it all off. It was quite traumatic but quite a relief when it was all off. So, I'm getting used to my new look - I've got a supply of bandanas and Martin and I went to Cardiff yesterday to choose a wig. Hopefully, it will arrive in the next couple of days..in time for the wedding this weekend. I'll post a picture when it comes!!Other than that, yesterday, I met with Lynne from St Peters' Hospice - interesting to find out what they do but something I can park for a while. She had some good ideas about stuff to do with Iona and top of her birthday list now is a digital camera so that she and I can make a holiday diary when we go up to Scotland later this month. Martin and I also had a very positive meeting at the solicitors - good to get more stuff sorted - and I had a lovely night out with Karen and Kate.
Vicky xx
Wednesday, 1 August 2007
Waiting to see what happens..
I had my first treatment of round two yesterday - by the time Nicky the nurse got here after 6 o'clock we'd already managed a bonus day in the sun which was lovely.
To me, it seemed like so much less of an ordeal than the previous treatments - no needles in the back of the hand, just a quick plug into my line and off it went, no giant syringes of pink liquid, just one small bag of clear fluid (taxotere/docetaxel) and no shivering under the blankets because of the miserable cold caps. And,no sickness at all!
This morning I started on the oral chemotherapy - 1800mg of delightful-coloured pinky/orange capecitabine tablets to be taken twice a day 30 minutes after breakfast and supper. The main side effects of this combination of drugs are expected to be debilitating tiredness and aching joints but, in my book, anything is better than nausea. And, from tomorrow, I can start to wean myself off the steroids..so I might even be able to look forward to a decent's night sleep!!
So, I'm just waiting to see what happens next but in the meantime, Iona and I will just keep on enjoying the holidays. I might even go out tonight!
Vicky xx
To me, it seemed like so much less of an ordeal than the previous treatments - no needles in the back of the hand, just a quick plug into my line and off it went, no giant syringes of pink liquid, just one small bag of clear fluid (taxotere/docetaxel) and no shivering under the blankets because of the miserable cold caps. And,no sickness at all!
This morning I started on the oral chemotherapy - 1800mg of delightful-coloured pinky/orange capecitabine tablets to be taken twice a day 30 minutes after breakfast and supper. The main side effects of this combination of drugs are expected to be debilitating tiredness and aching joints but, in my book, anything is better than nausea. And, from tomorrow, I can start to wean myself off the steroids..so I might even be able to look forward to a decent's night sleep!!
So, I'm just waiting to see what happens next but in the meantime, Iona and I will just keep on enjoying the holidays. I might even go out tonight!
Vicky xx
Saturday, 28 July 2007
Ahead on points!
Round 1 to me!
As I write the sun is shining, we are getting ready to go to a wedding, Iona is sorting through her nursery and school photos, Martin has gone to buy some new running shoes (his sore knee expertly diagnosed by Shane as 'neednewtraineritis'!) and things seem pretty normal.
After the initial shock I'm feeling in less of a panic and less needing to get everything sorted straight away. I am now feeling a lot calmer and we've had a nice few days doing school holiday stuff...apart from Tuesday that is when I was really rough - no doubt induced by the onslaught of radiotherapy, lack of sleep and generally wrung out emotions - but I'm feeling much more hopeful and happy, spurred on by steroids, anti-sickness pills, demands of a 5-year old and plenty of love and support from everyone around me.
I dragged myself in to see Dr B on Tuesday feeling as rough as I ever have done. I'm booked in for the chemo to start next Tuesday - at home again. This time it's going to be one infusion which will take about an hour and I've also to take an oral chemotherapy twice a day for two weeks. The combination of the two drugs is not as commonly given in this country as it is in Europe and the States as it offers a choice selection of side effects but Dr B is keen to stop this thing in its tracks..as am I. He reckons even if I can manage two treatments on the combination then that's definitely worthwhile. Let's see how we go.
The radiotherapy has been ok - there's a flash and a smell that will stay with me and the sound of the nurses scarpering to the safety of their waiting area to avoid the zap of the beams. The Occupational Health chap came round and closed his file after 10 minutes - I don't think there's going to be any problem with my retirement! It is an enormous relief not to be considering work at the moment - it means that every day is for us and enjoying what we can from it.
We've had some great help too - the girls have come into their own - Jacqui has kitted me out with the full Elizabeth Arden 8-hour face products (so while my body crumbles, at least my face will be ok!), Hannah, as well as giving fantastic advice on how to look after Iona in this whole situation, has braved taking her to the hairdressers' (and suffered the hour-long face of thunder!) and also bought me a super jazzy pair of wellies for wet weddings in fields (Congratulations Judy & Steve!)..and we now have a regular ironing service courtesy of the lovely 'other' Hannah.
So, let's see what next week brings - things to do - get a wig sorted, treat myself to a new sick bucket (not sure if Cath Kidston does any!), start going through years of family photos!
More soon.
Vicky xx
As I write the sun is shining, we are getting ready to go to a wedding, Iona is sorting through her nursery and school photos, Martin has gone to buy some new running shoes (his sore knee expertly diagnosed by Shane as 'neednewtraineritis'!) and things seem pretty normal.
After the initial shock I'm feeling in less of a panic and less needing to get everything sorted straight away. I am now feeling a lot calmer and we've had a nice few days doing school holiday stuff...apart from Tuesday that is when I was really rough - no doubt induced by the onslaught of radiotherapy, lack of sleep and generally wrung out emotions - but I'm feeling much more hopeful and happy, spurred on by steroids, anti-sickness pills, demands of a 5-year old and plenty of love and support from everyone around me.
I dragged myself in to see Dr B on Tuesday feeling as rough as I ever have done. I'm booked in for the chemo to start next Tuesday - at home again. This time it's going to be one infusion which will take about an hour and I've also to take an oral chemotherapy twice a day for two weeks. The combination of the two drugs is not as commonly given in this country as it is in Europe and the States as it offers a choice selection of side effects but Dr B is keen to stop this thing in its tracks..as am I. He reckons even if I can manage two treatments on the combination then that's definitely worthwhile. Let's see how we go.
The radiotherapy has been ok - there's a flash and a smell that will stay with me and the sound of the nurses scarpering to the safety of their waiting area to avoid the zap of the beams. The Occupational Health chap came round and closed his file after 10 minutes - I don't think there's going to be any problem with my retirement! It is an enormous relief not to be considering work at the moment - it means that every day is for us and enjoying what we can from it.
We've had some great help too - the girls have come into their own - Jacqui has kitted me out with the full Elizabeth Arden 8-hour face products (so while my body crumbles, at least my face will be ok!), Hannah, as well as giving fantastic advice on how to look after Iona in this whole situation, has braved taking her to the hairdressers' (and suffered the hour-long face of thunder!) and also bought me a super jazzy pair of wellies for wet weddings in fields (Congratulations Judy & Steve!)..and we now have a regular ironing service courtesy of the lovely 'other' Hannah.
So, let's see what next week brings - things to do - get a wig sorted, treat myself to a new sick bucket (not sure if Cath Kidston does any!), start going through years of family photos!
More soon.
Vicky xx
Monday, 23 July 2007
Get busy living, or get busy dying
These are words from one of Martin's and my favourite films, The Shawshank Redemption, and right now I need to a bit of both of these things.
Since last Tuesday, when we heard Dr B say 'It's not good news,' we have been riding the shockwaves and fighting our way through the blur - my blur has been confused by the steroids which give me a daytime lift and nighttime wakefulness..so I'm pretty tired too.
We don't underestimate the impact on many of you too. Once again we have been overwhelmed by your messages - the bus is fuller than ever. The Watson's girls will have to ride along on the top as in our sixth form French weekend days!!! You are dragging us up from the depths of despair and helping us face the days ahead. I promise that I will fight this fight as hard as I can and squeeze every last ounce out of my life and salvage what we can from our summer holiday plans.
On the medical front, things have marched on - I had my radiotherapy planning session on Friday with Dr Bahl who said that the lesions on my brain were small and the fact that my headaches have already responded to steroids is a good sign. Initially he'd said that I'd have to have permanent marks on my head for the duration of the treatment but luckily the nurses and technicians stepped in and I was fitted with a marked up moulded mask for the first treatment which started today at 1724!! I'll lose my hair in about 6 weeks. It wasn't too bad - very quick in and out. My head was strapped to the table and they zapped me for a couple of minutes each side then I was free to go. The treatment does aggravate the lesions initially so my headache is back for a while.
No need for cold caps this time round with the chemotherapy which is quite a relief. I'm also going to have a line put in tomorrow so no more back of the hand vein nasties either. The nurse will, using ultrasound, feed a line through from the upper arm and down towards the heart and leave it there for the duration of the treatment. The end remains open and sealed with a bandage and all blood taking and treatment can be done from there.
We are also seeing Dr B again tomorrow armed with questions and then I've got the Occupational Health doctor coming round to sort out all my retirement issues. Other than that, I've been in full on rant mode - raging against everything from the skip sticking out onto the pavement outside Redland High School, Virgin Media sending us 19 letters in 5 days and the local news reporter doing a piece to camera while driving his car!!! Helen has sent me a very useful book - Chasing Daylight: How my forthcoming death transformed my life. I sobbed when I read the title but I've read it cover to cover and it's given me some useful ideas on how to cope with all this. So, I'm going from rant mode to list mode - places to go, people to see, things to sort. I feel I could cope if it was just me but the pain, the agony all centres, of course, on my beautiful, innocent little girl. Most other things are resolvable but not that ever.. You realise that this blog will now be part of her memory box.
Of course, we have no definite idea of how long I've got and we continue to hope and believe that the treatment can give us more time but when your GP asks, as mine did this morning, 'Shall I refer you to St Peter's Hospice?', we know we have to be realistic.
Martin and I cannot thank you enough for your words, calls, offers of help and useful advice - we are so, so lucky to have you all.
Vicky xx
Since last Tuesday, when we heard Dr B say 'It's not good news,' we have been riding the shockwaves and fighting our way through the blur - my blur has been confused by the steroids which give me a daytime lift and nighttime wakefulness..so I'm pretty tired too.
We don't underestimate the impact on many of you too. Once again we have been overwhelmed by your messages - the bus is fuller than ever. The Watson's girls will have to ride along on the top as in our sixth form French weekend days!!! You are dragging us up from the depths of despair and helping us face the days ahead. I promise that I will fight this fight as hard as I can and squeeze every last ounce out of my life and salvage what we can from our summer holiday plans.
On the medical front, things have marched on - I had my radiotherapy planning session on Friday with Dr Bahl who said that the lesions on my brain were small and the fact that my headaches have already responded to steroids is a good sign. Initially he'd said that I'd have to have permanent marks on my head for the duration of the treatment but luckily the nurses and technicians stepped in and I was fitted with a marked up moulded mask for the first treatment which started today at 1724!! I'll lose my hair in about 6 weeks. It wasn't too bad - very quick in and out. My head was strapped to the table and they zapped me for a couple of minutes each side then I was free to go. The treatment does aggravate the lesions initially so my headache is back for a while.
No need for cold caps this time round with the chemotherapy which is quite a relief. I'm also going to have a line put in tomorrow so no more back of the hand vein nasties either. The nurse will, using ultrasound, feed a line through from the upper arm and down towards the heart and leave it there for the duration of the treatment. The end remains open and sealed with a bandage and all blood taking and treatment can be done from there.
We are also seeing Dr B again tomorrow armed with questions and then I've got the Occupational Health doctor coming round to sort out all my retirement issues. Other than that, I've been in full on rant mode - raging against everything from the skip sticking out onto the pavement outside Redland High School, Virgin Media sending us 19 letters in 5 days and the local news reporter doing a piece to camera while driving his car!!! Helen has sent me a very useful book - Chasing Daylight: How my forthcoming death transformed my life. I sobbed when I read the title but I've read it cover to cover and it's given me some useful ideas on how to cope with all this. So, I'm going from rant mode to list mode - places to go, people to see, things to sort. I feel I could cope if it was just me but the pain, the agony all centres, of course, on my beautiful, innocent little girl. Most other things are resolvable but not that ever.. You realise that this blog will now be part of her memory box.
Of course, we have no definite idea of how long I've got and we continue to hope and believe that the treatment can give us more time but when your GP asks, as mine did this morning, 'Shall I refer you to St Peter's Hospice?', we know we have to be realistic.
Martin and I cannot thank you enough for your words, calls, offers of help and useful advice - we are so, so lucky to have you all.
Vicky xx
Tuesday, 17 July 2007
So much for the summer off
I knew there was something wrong and Dr Braybrooke confirmed it - the cancer has spread to my liver and my brain. I'm starting radiotherapy on my head on Monday for a week and then more chemo the week after for 6 3-weekly sessions. The radiotherapy will make my hair fall out...but that's the least of my concerns right now. Dr B still thinks that it is worth treating because of the good response last time but it's going to be tough.
The bottom line is this thing is definitely going to get me sooner rather than later - I know it, we all know it and I need to work out how I'm going to deal with it.
It's a complete, total, gut wrenching fu!&%r.
Please don't feel you have to leave a message - who knows what to say at a time like this.
Vicky x
The bottom line is this thing is definitely going to get me sooner rather than later - I know it, we all know it and I need to work out how I'm going to deal with it.
It's a complete, total, gut wrenching fu!&%r.
Please don't feel you have to leave a message - who knows what to say at a time like this.
Vicky x
Subscribe to:
Posts (Atom)