Have not posted for a while as it can be hard reliving what you're going through and also now that I'm back at work after my 3 week Easter holidays the week goes so fast with weekly blood tests on one day and chemo the next plus working and resting!
Had a stressful and unfortunate blip with chemo 4 a fortnight ago when I had a cover nurse who though very nice did several things differently and had 2 failed attemps at my veins which resulted in a bad fainting attack from me. The nurse was then visibly shaken when my blood pressure (normally on the low side)dipped to 65 over 40 and I knew that it had gone down to 60 over 40 following my mastectomy 5 years ago in hospital and I'd needed 3 blood transfusions. Luckily after a few minutes resting back in bed this time my blood pressure began to normalise and thankfully it was 3rd time lucky for the veins and chemo went on as normal but it was all quite a shock and particularly as I was at home and just with one nurse who was clearly in a right panic and needed a cup of tea and to phone her superior!!
I thought I'd got over that day quite well and certainly physically it didn't seem to take its toll. However I suddenly found myself getting wound up into a dreadful emotional state by the morning of the following chemo. After a warm bath,watching tv and trying to do relaxation exercises in the early morning I finally succombed and rang the wonderful helpline and BreastCancerCare who are marvellous and helped me to calm down get things in perspective. By the time the nurse came I was ok again after having cried buckets (all while my husband was still sleeping!)and got through it ok.
I felt better this week and didn't get so low as then but feel that my confidence has been severely lowered and found myself pulling off the first cold cap yesterday in panic but my lovely husband came and talked me round and it went on again and I was fine. It wasn't really the cold cap itself I was having the problem with - it was the whole treatment and process - sometimes (well more than sometimes!) you just want it to stop. I think it will seem easier to cope with if we get positive results from my PET scan on May 9th. At least then we will know the treatment is doing something positive and not just a nasty inconvenience! I know I've been so lucky not to have to had to cope with total hairloss or many of the nasty side-effects you can get but I'd rather have none of it at all.
It's the prospect that I'm likely to be on some sort of treatment (aggressive treatment at that)for the rest of my life that scares me the most - people ask when the chemo will stop but the problem is the disease may progress more quickly with no treatment so it's likely it will be ongoing if it's working.
Anyway I'm always going on about how it's important to just take every day as it comes and not think too far ahead. I have been so positive from the start but it isn't easy to keep this up!
A couple of weeks ago I was keenly planning a wonderful holiday to New Zealand and Australia which I still hope we may be able to do at Christmas all being well but as well as being dependent on my health being ok it hangs on me being able to release my private pension in full. I am waiting to hear if that is going to happen and had to go to my GP to request that he writes to the pension fund saying I could have less than 12 months to live as that's the only way they'd let me have the money even though whatever happens it would take a major miracle for me to make 60. The GP was upset at my request and said it's impossible to say which I know too but the pension company are more black and white with their beuracracy! I think this lowered my confidence too so I haven't been doing any more planning for that holiday until I know for sure about the money!
Anyway I don't want to depress anyone further - I have been fine when I'm distracted and busy but it's the actual treatment that I'm finding hard to face and the fact that my positivity seems to have waned even though I'm trying hard to get it back!
I played badminton 3 times last week and am really loving it. I hope I can keep it up for as long as possible as it gives me a lot of pleasure - especially after years of thinking I may be dyspraxic and couldn't do any sport at all let alone enjoy it!!
It's just over 3 weeks that we go to Antibes and lots of things happening before then so I hope to be sounding a little more upbeat in my next blog!
Thursday, 17 April 2008
Thursday, 27 March 2008
A mix of rough and smooth!
Had a good day on Saturday. My good friend J came from Wiltshire for the day with her 9 year old daughter L whom I hadn't seen since she was about 7 (L not J!).
L played her cello very nicely to me while I accompanied her on the piano, although I was alarmed to find that J has changed from very laid-back student person at music college who was an infrequent practiser to a semi"pushy" mum goading her child forward so loudly I found it hard to hear the beat!! J's even hired a cello so that she can learn alongside L! I think she'll have a job keeping up! Only kidding J, but it is funny how people can change without realising!
After a pleasant lunch at a local pub we went into the health club in Cardiff where me and my husband S are members. We had a lovely relaxing time playing badminton and L kept herself amused by trying a bit of badminton and then concocting a very good way of keeping score when she'd run out of the five fingers she was holding up for each of us! She was an excellent referee!! We went for a lovely swim and L informed me quite loudly that she was a much better swimmer than her mother and proceeded to swim up and down like a dolphin which was good as I'd feared she'd want to be in the busy part of the pool with all the other children. We finished off our visit with some ice-cream and then proceeded back home worried about the quick flurry of snow which actually melted as soon as it hit the ground. While the rest of the UK seemed to be under snow and bad weather for the rest of the Easter weekend we had blue skies and fairly mild temperatures in South Wales and no rain!!Makes a change!!
It'd been really nice to almost completely forget about our situation with my health and just switch off from it even for a few hours.
I came down to earth with a bump in the evening though as the fears and realisation that life wasn't looking quite so rosy came back to me! I guess it comes in waves and I can't be positive and almost in denial all of the time but it is nice to "escape" the dread for a while!
Easter Sunday was my beloved S's 34th birthday. We had a quiet, relaxing day at home with a very nice (even though I say so myself!)roast beef meal although the yorkshires failed to rise but the dog didn't seem to mind and scoffed the lot!
I was mostly feeling calm but couldn't help wondering how many more birthdays we would be celebrating together - thoughts I wish I wasn't having to face at 38! I feel quite optimistic about reaching my 40th but his seems a little further from reach! A lot of people dread creeping age I know but I have a different perspective on it now!!
The next couple of days found us both increasingly tense and anxious as "chemo day" was looming on the Wednesday again!
We enjoyed spending some time in the garden and bought some nice bedding plants to brighten it up.
We had a very nice meal with friends on Tuesday night but we both found it very hard to relax and let go of the dread of the next day and as I don't know the couple very well I found it quite hard to act like all was fine. They probably though it best to avoid the difficult subject of my health or what was happening in my life but then it's hard to feel a part of what's going on!
Also we took our dog,with their encouragement to meet their new 3 yr old rescue golden retriever who was gorgeous but when our back was turned had a big altercation with our dog who was mixing him up with a bitch as the retriever has just been "done" and so that was quite stressful! I noticed a nasty gash on our dog's ear yesterday that I'd first mistaken for a tick but it's definitely a war wound!! That'll hopefully teach him not to get "fruity" with other dogs or bitches !!!
Anyway chemo day came and went yesterday. As things had been quite stressful at home with S being on holiday from work I felt quite panicked about the treatment at first and really felt like ripping out the drip from my arm and the freezing cold cap from my head but I managed to restrain myself and tried hard to distract myself from this and then the time passed much quicker! I managed to solve my previous problem of becoming extremely cold with having to have 4 different cold caps on my head for a total of 2 hours each of which had come straight from the freezer!! I wore lots of layers, a fleecey jacket,blanket and hot water bottle and the fire was on full so I cracked it!
Anyway I feel a lot better today for the fact it's over till next Wednesday!!! Only 5 more to get through before I have 2 weeks off treatment and go to France so I have to focus on that!
Neither of us slept very well last night - I think the steroids keep me restless once the pre-med has worn off as I had a great sleep in the afternoon but was awake a lot of the night.
It's amazing how much brighter I feel though just having that day out of the way! I though depression was creeping in but it's being kept at bay at the mo thank goodness and I feel more like my positive self and am in planning mode again!
Would love to go to Australia and New Zealand as it's been on the back-burner for a while but am aiming to plan for going at Christmas even though it seems impossible for many reasons at the moment. I do think forward thinking and planning to a certain extent can keep you going for a while even if plans don't always turn out as you'd hoped!
Oh well - another week coped with!
L played her cello very nicely to me while I accompanied her on the piano, although I was alarmed to find that J has changed from very laid-back student person at music college who was an infrequent practiser to a semi"pushy" mum goading her child forward so loudly I found it hard to hear the beat!! J's even hired a cello so that she can learn alongside L! I think she'll have a job keeping up! Only kidding J, but it is funny how people can change without realising!
After a pleasant lunch at a local pub we went into the health club in Cardiff where me and my husband S are members. We had a lovely relaxing time playing badminton and L kept herself amused by trying a bit of badminton and then concocting a very good way of keeping score when she'd run out of the five fingers she was holding up for each of us! She was an excellent referee!! We went for a lovely swim and L informed me quite loudly that she was a much better swimmer than her mother and proceeded to swim up and down like a dolphin which was good as I'd feared she'd want to be in the busy part of the pool with all the other children. We finished off our visit with some ice-cream and then proceeded back home worried about the quick flurry of snow which actually melted as soon as it hit the ground. While the rest of the UK seemed to be under snow and bad weather for the rest of the Easter weekend we had blue skies and fairly mild temperatures in South Wales and no rain!!Makes a change!!
It'd been really nice to almost completely forget about our situation with my health and just switch off from it even for a few hours.
I came down to earth with a bump in the evening though as the fears and realisation that life wasn't looking quite so rosy came back to me! I guess it comes in waves and I can't be positive and almost in denial all of the time but it is nice to "escape" the dread for a while!
Easter Sunday was my beloved S's 34th birthday. We had a quiet, relaxing day at home with a very nice (even though I say so myself!)roast beef meal although the yorkshires failed to rise but the dog didn't seem to mind and scoffed the lot!
I was mostly feeling calm but couldn't help wondering how many more birthdays we would be celebrating together - thoughts I wish I wasn't having to face at 38! I feel quite optimistic about reaching my 40th but his seems a little further from reach! A lot of people dread creeping age I know but I have a different perspective on it now!!
The next couple of days found us both increasingly tense and anxious as "chemo day" was looming on the Wednesday again!
We enjoyed spending some time in the garden and bought some nice bedding plants to brighten it up.
We had a very nice meal with friends on Tuesday night but we both found it very hard to relax and let go of the dread of the next day and as I don't know the couple very well I found it quite hard to act like all was fine. They probably though it best to avoid the difficult subject of my health or what was happening in my life but then it's hard to feel a part of what's going on!
Also we took our dog,with their encouragement to meet their new 3 yr old rescue golden retriever who was gorgeous but when our back was turned had a big altercation with our dog who was mixing him up with a bitch as the retriever has just been "done" and so that was quite stressful! I noticed a nasty gash on our dog's ear yesterday that I'd first mistaken for a tick but it's definitely a war wound!! That'll hopefully teach him not to get "fruity" with other dogs or bitches !!!
Anyway chemo day came and went yesterday. As things had been quite stressful at home with S being on holiday from work I felt quite panicked about the treatment at first and really felt like ripping out the drip from my arm and the freezing cold cap from my head but I managed to restrain myself and tried hard to distract myself from this and then the time passed much quicker! I managed to solve my previous problem of becoming extremely cold with having to have 4 different cold caps on my head for a total of 2 hours each of which had come straight from the freezer!! I wore lots of layers, a fleecey jacket,blanket and hot water bottle and the fire was on full so I cracked it!
Anyway I feel a lot better today for the fact it's over till next Wednesday!!! Only 5 more to get through before I have 2 weeks off treatment and go to France so I have to focus on that!
Neither of us slept very well last night - I think the steroids keep me restless once the pre-med has worn off as I had a great sleep in the afternoon but was awake a lot of the night.
It's amazing how much brighter I feel though just having that day out of the way! I though depression was creeping in but it's being kept at bay at the mo thank goodness and I feel more like my positive self and am in planning mode again!
Would love to go to Australia and New Zealand as it's been on the back-burner for a while but am aiming to plan for going at Christmas even though it seems impossible for many reasons at the moment. I do think forward thinking and planning to a certain extent can keep you going for a while even if plans don't always turn out as you'd hoped!
Oh well - another week coped with!
Wednesday, 19 March 2008
Up and running!
Well, I've now completed my first 2 weeks of chemo and I'm still hanging in there - more than that really! I've been amazed at how relatively well I've been feeling actually. Weekly chemo is supposed to be better tolerated than the more common 3 weekly (3times the dose)regime I was on 5 years ago.
Last week after the first chemo I was able to eat normally and although very drowsy on the day itself due to the pre-med they give you with the Taxol chemo I'm on, I was able to go on an hour dog wlak the next afternoon and even played the best badminton I've ever played (only a beginner!)for an hour and a half group coaching in the evening!
I then had a bad night with mild nausea and constant joint pains in different random parts of my body all night but was still able to go into work the next morning for my last teaching day of the term. Luckily the pains subsided after 2 days and although I have odd twinges now it's perfectly manageable.
It was a 3 hour session last week due to me having the extra Avastin drug which is just fortnightly. Today it was just the chemo and the cold caps to try and curtail or prevent dramatic hairloss and the whole process took 2 hours. I've had a big sleep this afternoon and should be able to sleep well tonight as I'm still quite drowsy.
We were able to order a new car at the weekend which is something to get excited about in this turbulent time. We've also booked a much needed holiday to Antibes on the Cote d'Azur in May which is also something to look forward to in a time where planning ahead is very tricky! Luckily I need to have a 2 week break from the chemo in order to have my 8 weekly PET scan in London so it will be nice to relax after that for a short time. I realised just after I'd booked -bagging the last room in the lovely small hotel we've stayed in before that we'll be there at the time of the Cannes Film Festival so it will be very busy! Am excited about star spotting but hope it won't be too crowded!!
Am still very touched by all the support I'm getting and am very grateful for all the comments on my blog. As I'm new to this I forget who I've acknowledged so I thank you all and am grateful to you.
Words are inadequate and yet so powerful too. I have been so heartened by dear friends and particularly a new friend who's come into my life and helps me enormously to feel that I've still got a valid place in the world - as corny as that may sound! I am beginning to feel that I can "live" with this now instead of "die" with it right up until the end as none of us truly know when that will be anyway.
"It's not over until it's over!"
Last week after the first chemo I was able to eat normally and although very drowsy on the day itself due to the pre-med they give you with the Taxol chemo I'm on, I was able to go on an hour dog wlak the next afternoon and even played the best badminton I've ever played (only a beginner!)for an hour and a half group coaching in the evening!
I then had a bad night with mild nausea and constant joint pains in different random parts of my body all night but was still able to go into work the next morning for my last teaching day of the term. Luckily the pains subsided after 2 days and although I have odd twinges now it's perfectly manageable.
It was a 3 hour session last week due to me having the extra Avastin drug which is just fortnightly. Today it was just the chemo and the cold caps to try and curtail or prevent dramatic hairloss and the whole process took 2 hours. I've had a big sleep this afternoon and should be able to sleep well tonight as I'm still quite drowsy.
We were able to order a new car at the weekend which is something to get excited about in this turbulent time. We've also booked a much needed holiday to Antibes on the Cote d'Azur in May which is also something to look forward to in a time where planning ahead is very tricky! Luckily I need to have a 2 week break from the chemo in order to have my 8 weekly PET scan in London so it will be nice to relax after that for a short time. I realised just after I'd booked -bagging the last room in the lovely small hotel we've stayed in before that we'll be there at the time of the Cannes Film Festival so it will be very busy! Am excited about star spotting but hope it won't be too crowded!!
Am still very touched by all the support I'm getting and am very grateful for all the comments on my blog. As I'm new to this I forget who I've acknowledged so I thank you all and am grateful to you.
Words are inadequate and yet so powerful too. I have been so heartened by dear friends and particularly a new friend who's come into my life and helps me enormously to feel that I've still got a valid place in the world - as corny as that may sound! I am beginning to feel that I can "live" with this now instead of "die" with it right up until the end as none of us truly know when that will be anyway.
"It's not over until it's over!"
Saturday, 8 March 2008
The power of friendship!
This week has gone by quite quickly which is something as the previous fortnight with the shock of bad news seemed unending.
It is so heartening to be having such positive and loving support from family and friends at such a difficult time. My family and most of my closest friends live quite a distance away but email and the phone are the next best thing. It's when the chips are down that you realise how blessed you are with friends who truly care and it's interesting how people cope so differently in light of your bad news. Odd friends you've known for years seem to fade into the distance and then others you hardly know turn out to be amazingly supportive. A parent of a new pupil I've only given 5 lessons to so far, and never actually met the mother as I teach him at school, sent me a lovely card and note today and said I was welcome to met up for coffee with her which was extremely kind.
Another new friend came into my life this week through playing badminton and has offered strong support and lent me books on improving diet and lifestyle and just her sheer desire to try and help and support me and my husband through this gives me so much strength. I don't want to be a burden or to "dump" all my worries on people but it's nice to know that there are a few special people including my dear sister who I can turn to when I need to.
I feel in a positive place right now. I agree with previous comments that it is never easy to know what to say when someone is in a very difficult situation you can't do anything about but from a personal standpoint some words are better than saying nothing and staying away.
There are no "right" words but I think if someone you've known really well seems to avoid you you can't help thinking"well if they've got no hope for me maybe there isn't any". Someone supporting you and just being normal around you gives you the hope you so badly need.
I would actually rather someone puts their foot in it like my nextdoor neighbour or my dear former elderly piano teacher who made some "joke" telling me to keep smoking the cigarettes on my telling her I had secondary lung cancer!! I don't smoke by the way at all!!!I know her well and she often says slightly misjudged comments but I know it's just because she doesn't know what to say really!
There is also such a lot of support online now. Breast Cancer Care are absolutely fantastic and are constantly improving and expanding their services. In 2003 following my chemotherapy for my first diagnosis I joined an 8 week telephone support group run and funded by them for younger women with breast cancer which was invaluable but there weren't any groups for people with secondaries at the time. There are now and I'm about to take part in a 4 week course soon which will hopefully be helpful and help me to not feel alone. I'm also hoping to go to two get-togethers soon with cyber friends I've met also living with secondary breast cancer.
My best friend from college days, J is always there for me. We've known each other 19 years now since we met on that first day at college all those years ago! I can remember our first conversation which was about medieval music of all things! We've been through a lot together over the years and have both been there for each other. We've had our sticky moments as all good friends probably do especially being young students at the time straight out of school but I can look back on lots of great and funny moments we've shared. I remember the night I came in to our shared student house very disgruntled as my boyfriend had dumped me when I was on the verge of dumping him myself and felt humiliated that he'd got there first! I found J in the house and poured my heart out to her and she confessed to me that the date she'd supposed to have been on earlier that week and which she'd told us all had gone well had not happened at all as she'd been stood up but I was not to tell our other housemates as she was too embarrassed! We had a good laugh at our misfortunes and both felt a lot better!
J's got a 9 year old daughter now and yet whenever we talk it's just like we were back at college again and had no real worries or responsibilities. I love that we can go weeks or even months without talking on the phone or seeing each other but we always manage to talk for hours and there's never enough time and I always know that she's there for me and I hope she knows I'm there for her too.
My dog B is very much my best friend too. He is always pleased to see me no matter what and seems so intuitive to my moods cuddling up to me when I'm sad. He instinctively knows when me and my husband are having serious or slightly heated discussions and makes a retreat to his basket! I am sure the dog has sensed something is afoot at the moment. One of the first things I though when I got this recent diagnosis was "Oh Gosh the dog's going to outlive me" but I'm going to try hard to not think like that. The dog is such a comfort and he never complains or is a bother to us. I never had a dog before and we got him 3 days after my last chemo nearly 5 years ago and so he's very special to me as he helped me through the difficult transition back to "normal life" and I've spent a lot of time with him as I wasn't working at all at the time and only work part-time now. The first week we had him I though "what have we done?" as he tried to run rings round me during the day when S my husband was at work and then would obediently sleep at S's feet prompting my husband to be perplexed as why I would often be in tears that first week when he came home from work as the puppy just didn't stop getting into mischief all day long!! He calmed down a lot after the first few weeks and is very good nowadays. He's taken recently to coming upstairs when we're asleep and landing on our bed which he knows he's not supposed to do but most times now I don't hear a thing until I try and turn over as he invariably sleeps on my side of the bed for some reason!!
I know he'll be a great help to me through this journey.
It is so heartening to be having such positive and loving support from family and friends at such a difficult time. My family and most of my closest friends live quite a distance away but email and the phone are the next best thing. It's when the chips are down that you realise how blessed you are with friends who truly care and it's interesting how people cope so differently in light of your bad news. Odd friends you've known for years seem to fade into the distance and then others you hardly know turn out to be amazingly supportive. A parent of a new pupil I've only given 5 lessons to so far, and never actually met the mother as I teach him at school, sent me a lovely card and note today and said I was welcome to met up for coffee with her which was extremely kind.
Another new friend came into my life this week through playing badminton and has offered strong support and lent me books on improving diet and lifestyle and just her sheer desire to try and help and support me and my husband through this gives me so much strength. I don't want to be a burden or to "dump" all my worries on people but it's nice to know that there are a few special people including my dear sister who I can turn to when I need to.
I feel in a positive place right now. I agree with previous comments that it is never easy to know what to say when someone is in a very difficult situation you can't do anything about but from a personal standpoint some words are better than saying nothing and staying away.
There are no "right" words but I think if someone you've known really well seems to avoid you you can't help thinking"well if they've got no hope for me maybe there isn't any". Someone supporting you and just being normal around you gives you the hope you so badly need.
I would actually rather someone puts their foot in it like my nextdoor neighbour or my dear former elderly piano teacher who made some "joke" telling me to keep smoking the cigarettes on my telling her I had secondary lung cancer!! I don't smoke by the way at all!!!I know her well and she often says slightly misjudged comments but I know it's just because she doesn't know what to say really!
There is also such a lot of support online now. Breast Cancer Care are absolutely fantastic and are constantly improving and expanding their services. In 2003 following my chemotherapy for my first diagnosis I joined an 8 week telephone support group run and funded by them for younger women with breast cancer which was invaluable but there weren't any groups for people with secondaries at the time. There are now and I'm about to take part in a 4 week course soon which will hopefully be helpful and help me to not feel alone. I'm also hoping to go to two get-togethers soon with cyber friends I've met also living with secondary breast cancer.
My best friend from college days, J is always there for me. We've known each other 19 years now since we met on that first day at college all those years ago! I can remember our first conversation which was about medieval music of all things! We've been through a lot together over the years and have both been there for each other. We've had our sticky moments as all good friends probably do especially being young students at the time straight out of school but I can look back on lots of great and funny moments we've shared. I remember the night I came in to our shared student house very disgruntled as my boyfriend had dumped me when I was on the verge of dumping him myself and felt humiliated that he'd got there first! I found J in the house and poured my heart out to her and she confessed to me that the date she'd supposed to have been on earlier that week and which she'd told us all had gone well had not happened at all as she'd been stood up but I was not to tell our other housemates as she was too embarrassed! We had a good laugh at our misfortunes and both felt a lot better!
J's got a 9 year old daughter now and yet whenever we talk it's just like we were back at college again and had no real worries or responsibilities. I love that we can go weeks or even months without talking on the phone or seeing each other but we always manage to talk for hours and there's never enough time and I always know that she's there for me and I hope she knows I'm there for her too.
My dog B is very much my best friend too. He is always pleased to see me no matter what and seems so intuitive to my moods cuddling up to me when I'm sad. He instinctively knows when me and my husband are having serious or slightly heated discussions and makes a retreat to his basket! I am sure the dog has sensed something is afoot at the moment. One of the first things I though when I got this recent diagnosis was "Oh Gosh the dog's going to outlive me" but I'm going to try hard to not think like that. The dog is such a comfort and he never complains or is a bother to us. I never had a dog before and we got him 3 days after my last chemo nearly 5 years ago and so he's very special to me as he helped me through the difficult transition back to "normal life" and I've spent a lot of time with him as I wasn't working at all at the time and only work part-time now. The first week we had him I though "what have we done?" as he tried to run rings round me during the day when S my husband was at work and then would obediently sleep at S's feet prompting my husband to be perplexed as why I would often be in tears that first week when he came home from work as the puppy just didn't stop getting into mischief all day long!! He calmed down a lot after the first few weeks and is very good nowadays. He's taken recently to coming upstairs when we're asleep and landing on our bed which he knows he's not supposed to do but most times now I don't hear a thing until I try and turn over as he invariably sleeps on my side of the bed for some reason!!
I know he'll be a great help to me through this journey.
Saturday, 1 March 2008
Adjusting!
Well - it's been a busy week - the past fortnight feels like it's been a month! So much to sort out,find out and deal with.
Was getting frustrated and anxious towards the end of this week as I still hadn't heard from the hospital about a start date for my treatment and I'd previously been told it should be starting next week. Your whole life feels like it's on hold until you know what's happening.
After a very stressful day with me and my husband both getting overwrought with each other I finally was phoned up on Thursday afternoon by the nurse who will be giving me my treatment at home and told it will start on Wed 12th March with bloods being taken the day before.
We've been going from very positive and happy thoughts to very black thoughts this week. It's hard to get the balance at the moment when the news is so fresh!
People's reactions are interesting. I met a neighbour in town on Wednesday and told her as I know the bush telegraph is rife in our village and she'd get to know soon anyhow. She asked if I'd come to terms with it yet - after 5 days! I know she meant well of course but I don't even know what this news about my health really means in real terms anyhow so I think it is a very gradual coming to terms with thing over a long time (hopefully). Another neighbour said I'd be so relieved when it was all over - meaning the treatment - I didn't like to say that well I wouldn't be around as I am likely to be on some sort of treatment for the rest of my life now. It's weird but you really can find a sort of black humour even when faced with your own mortality as sometimes it just doesn't really feel as if it's really happening to you! You feel somehow removed from yourself especially as I currently feel so well!
Friends I've told so far have been mostly extremely supportive but I had a massed forwarded email from one friend today telling of the dangers of keeping bottled water in a car ( it doesn't say for how long)and the links to breast cancer. It said that's how Sheryl Crow got breast cancer. My friend had also written to me " I hope this helps"! For one I think it highly unlikely that Sheryl Crow can possibly definitively what caused her breast cancer and two I find these emails that claim to have found the definitive cause of things and you must send this to all your female friends to keep them safe rather distasteful and patronising! Also even if it's true - I never have gone in much for buying bottled water, never leave it in my car and also it's not a lot of help to me now I've got secondaries but I'll stop ranting now as I'm sure my friend meant well!
Don't get me wrong, it's not that I'm not interested in possible causes - we've read loads of books and articles over the past 5 years, changed and improved our diets greatly, get organic fruit, veg and meat boxes weekly and have reduced the amount of chemical cleaning products and gone over to different shampoos to try to avoid the very strong chemicals but these silly emails that scaremonger people and are generally not very accurate really annoy me!
I'm very excited about my Playstation 3 that I've treated myself to and will hopefully arrive next week! I feel like a teenager again about it although of course such things were not in existence when I was a teenager! If I'm going to be spending time at home recovering from my weekly chemo and drug treatments I want something worthwhile to do! Ha ha!
I'm also an avid reader and must start cross-stitching again which I took up 5 years ago when I first was having chemo to while away the time.
I'm still busy teaching the piano as well. It's strange carrying on a semi-normal existence whilst carrying this great burden at the same time but I guess there people all over doing exactly the same but this doesn't always make it any easier!
I've enjoyed having my teaching to distract me this week. I do genuinely enjoy what I do when the child enjoys learning too - it can be purgatory teaching a reluctant practiser for them and for me!!
I'm hoping I'll be able to keep up with my badminton too which I took up last August and really love despite being convinced for most of my life that any kind of sport and me just don't go! I could never get the tennis ball over the net despite lots of coaching as a child so convinced myself I must have been dyspraxic which my husband regards as hilarious as he says I'm very well-co-ordinated. It's funny what labels stick on to you as a child and go with you into your adult life!
Haven't done much running this week but am still determined to try and run most or all of the way in the Race for Life I'm doing in Cardiff in June. Have never done anything like that before. Less than a year ago I struggled to run a few yards for a bus without nearly collapsing with stitch so it will be a big personal achievement for me especially this year!
Happy St. David's Day!
Was getting frustrated and anxious towards the end of this week as I still hadn't heard from the hospital about a start date for my treatment and I'd previously been told it should be starting next week. Your whole life feels like it's on hold until you know what's happening.
After a very stressful day with me and my husband both getting overwrought with each other I finally was phoned up on Thursday afternoon by the nurse who will be giving me my treatment at home and told it will start on Wed 12th March with bloods being taken the day before.
We've been going from very positive and happy thoughts to very black thoughts this week. It's hard to get the balance at the moment when the news is so fresh!
People's reactions are interesting. I met a neighbour in town on Wednesday and told her as I know the bush telegraph is rife in our village and she'd get to know soon anyhow. She asked if I'd come to terms with it yet - after 5 days! I know she meant well of course but I don't even know what this news about my health really means in real terms anyhow so I think it is a very gradual coming to terms with thing over a long time (hopefully). Another neighbour said I'd be so relieved when it was all over - meaning the treatment - I didn't like to say that well I wouldn't be around as I am likely to be on some sort of treatment for the rest of my life now. It's weird but you really can find a sort of black humour even when faced with your own mortality as sometimes it just doesn't really feel as if it's really happening to you! You feel somehow removed from yourself especially as I currently feel so well!
Friends I've told so far have been mostly extremely supportive but I had a massed forwarded email from one friend today telling of the dangers of keeping bottled water in a car ( it doesn't say for how long)and the links to breast cancer. It said that's how Sheryl Crow got breast cancer. My friend had also written to me " I hope this helps"! For one I think it highly unlikely that Sheryl Crow can possibly definitively what caused her breast cancer and two I find these emails that claim to have found the definitive cause of things and you must send this to all your female friends to keep them safe rather distasteful and patronising! Also even if it's true - I never have gone in much for buying bottled water, never leave it in my car and also it's not a lot of help to me now I've got secondaries but I'll stop ranting now as I'm sure my friend meant well!
Don't get me wrong, it's not that I'm not interested in possible causes - we've read loads of books and articles over the past 5 years, changed and improved our diets greatly, get organic fruit, veg and meat boxes weekly and have reduced the amount of chemical cleaning products and gone over to different shampoos to try to avoid the very strong chemicals but these silly emails that scaremonger people and are generally not very accurate really annoy me!
I'm very excited about my Playstation 3 that I've treated myself to and will hopefully arrive next week! I feel like a teenager again about it although of course such things were not in existence when I was a teenager! If I'm going to be spending time at home recovering from my weekly chemo and drug treatments I want something worthwhile to do! Ha ha!
I'm also an avid reader and must start cross-stitching again which I took up 5 years ago when I first was having chemo to while away the time.
I'm still busy teaching the piano as well. It's strange carrying on a semi-normal existence whilst carrying this great burden at the same time but I guess there people all over doing exactly the same but this doesn't always make it any easier!
I've enjoyed having my teaching to distract me this week. I do genuinely enjoy what I do when the child enjoys learning too - it can be purgatory teaching a reluctant practiser for them and for me!!
I'm hoping I'll be able to keep up with my badminton too which I took up last August and really love despite being convinced for most of my life that any kind of sport and me just don't go! I could never get the tennis ball over the net despite lots of coaching as a child so convinced myself I must have been dyspraxic which my husband regards as hilarious as he says I'm very well-co-ordinated. It's funny what labels stick on to you as a child and go with you into your adult life!
Haven't done much running this week but am still determined to try and run most or all of the way in the Race for Life I'm doing in Cardiff in June. Have never done anything like that before. Less than a year ago I struggled to run a few yards for a bus without nearly collapsing with stitch so it will be a big personal achievement for me especially this year!
Happy St. David's Day!
Sunday, 24 February 2008
Bad news!
Well we got the results of Thursday's PET scan on Friday evening and it shows what we feared that I now have secondary breast cancer in both lungs (although very small)and in several lymph nodes in my neck and one in my lung.
It's all been found quite early as I have no symptoms and my tumour marker blood tests were clear but in the long run it's not curable.
I'm going to have weekly Taxol chemo (weekly! 3 weekly FEC 5 years ago was bad enough!)along with fortnightly intravenous injections of a new drug Avastin. I'm very lucky to have BUPA insurance through my husband's work and the oncologist is hoping I can have the treatment from home which will help enormously as a 36 mile round trip to Cardiff weekly would be a complete pain and add to the strain of it all.
My husband's work is only 8 mins drive from where we live so that is also reassuring for both of us that he could just pop home at lunchtime if there was a problem.
I'm in pragmatic mode at the moment but lapsed into quite a few very tearful moments yesterday. It's like I'm 2 people at the moment - one who is desperate to act as if everything is and will be fine and be positive and practical - I can hear myself telling people very calmly and then there's this other person trapped inside who's saying everything's not fine, it's awful and I don't want any of it and help! I can't jump out of my own body though so I haven't got a lot of choice! I don't think it's about being brave as people seem to think - it's self-preservation the fact I've no choice but to try and cope with it or whatever life I have left( and it could be quite a while yet) would be thoroughly miserable and I don't want that.
My beloved husband is finding it very hard. He's being uncharacteristicly very tearful and I'm the opposite which is odd as I usually am able to cry at the drop of a hat!
I think it will be easier to come to terms with once treatment starts and we get into a routine.
Anyway I think that's enough for now as my head's starting to jangle again! I'm not used to writing what I think down!
The internet's a wonderful thing and I've already found many women with similar problems to share with which does help when you feel so alone and afraid and yet need to be strong for those around you.
It's all been found quite early as I have no symptoms and my tumour marker blood tests were clear but in the long run it's not curable.
I'm going to have weekly Taxol chemo (weekly! 3 weekly FEC 5 years ago was bad enough!)along with fortnightly intravenous injections of a new drug Avastin. I'm very lucky to have BUPA insurance through my husband's work and the oncologist is hoping I can have the treatment from home which will help enormously as a 36 mile round trip to Cardiff weekly would be a complete pain and add to the strain of it all.
My husband's work is only 8 mins drive from where we live so that is also reassuring for both of us that he could just pop home at lunchtime if there was a problem.
I'm in pragmatic mode at the moment but lapsed into quite a few very tearful moments yesterday. It's like I'm 2 people at the moment - one who is desperate to act as if everything is and will be fine and be positive and practical - I can hear myself telling people very calmly and then there's this other person trapped inside who's saying everything's not fine, it's awful and I don't want any of it and help! I can't jump out of my own body though so I haven't got a lot of choice! I don't think it's about being brave as people seem to think - it's self-preservation the fact I've no choice but to try and cope with it or whatever life I have left( and it could be quite a while yet) would be thoroughly miserable and I don't want that.
My beloved husband is finding it very hard. He's being uncharacteristicly very tearful and I'm the opposite which is odd as I usually am able to cry at the drop of a hat!
I think it will be easier to come to terms with once treatment starts and we get into a routine.
Anyway I think that's enough for now as my head's starting to jangle again! I'm not used to writing what I think down!
The internet's a wonderful thing and I've already found many women with similar problems to share with which does help when you feel so alone and afraid and yet need to be strong for those around you.
Wednesday, 20 February 2008
Twists and turns
It has taken me more than 3 months since I set up this blog to actually take the plunge and write something!
Since this"journey" with breast cancer began when I was first diagnosed at the end of 2002 aged 32 my husband has been trying to persuade me to keep some sort of diary or written account of what's been happening and how I was feeling. I never felt up to doing that during or after treatment - it was all so raw and I was afraid of really facing my feelings if I had to look at them in black and white!
Anyway as life moved on and following a recurrence last year which was so much more straight forward compared to the first time, I felt life was on the up again after swiftly being able to return to work and "normal life" again so I set up the blog and felt I could give a positive account of life despite breast cancer.
However life has a way of coming and biting you just when you're feeling on your feet again! Firstly, I went on a most amazing 6 day outward bounds type course last September run by a charity called Odyssey for people who have had or have cancer. I was extremely unsporty at school and despite my slim figure have never been into much exercise and have always hated the idea of outdoorsy-based and outward bound type courses so I wasn't sure what I'd make of it. Also the organisers deliberately tell you very limited information about the course - not even exactly where in the UK it is - the whole course runs on the element of surprise and to challenge yourself. It really was a life-changing course for me. There were 10 other women on the course aged from 18-63 and we all got on extremely well and were freely able to share our stories as and when we wanted but there were no therapy groups or anything. I'm not able to say what we did in case anyone reading this gets to go but I'd highly recommend it. It's extremely well-organised and I came back with a renewed confidence and energy and desire to push myself to my limits and a feeling I could do whatever I really wanted to do.
Anyway, since then a lovely lady on that course who was only 33 who seemed full of energy and completely well was diagnosed with secondaries to the lungs just 6 weeks later and sadly died at the end of January this year. Many of us have kept in regular touch by email and this has hit us all very hard. I did not get to her know her that well during the course as she was in another group but she seemed such a positive vibrant person.
It was such a shock that someone who seemed so well and was able to do all the activities easily was to die just 4 months later. It hit both me and my husband very hard as you can't help think the same could happen to me. When you've had cancer you live with the fact it could come back or be in your body every day without you realising it. You come to terms with that and some days you can go without thinking about it but it's always there!
I went for a routine check-up at the beginning of this month and I plucked up courage to ask to be referred to a fertility clinic with an aim to ask to have tests to see whether the chemotherapy I had back in 2003 could have damaged my fertility as we'd been trying for a year without success just before my recurrence last March and then again unsuccessfully for 6 months since finishing my radiotherapy treatment in June 2007. As I've just turned 38 age is not on my side and although I've always been in two minds about even trying for a baby,worried in case the cancer came back or that a pregnancy could even cause it to come back with the surge of oestrogen during pregnancy but my desire to have a baby (maybe selfishly)has always over-ridden my fears!
Anyway the oncologist agreed but he also suggested I had some blood tests which might indicate if any cancer was in my body and also suggested a CT scan as I had not previously any scans.
I had the CT scan last week and was fully expecting everything to be normal as I have had no symptoms to suggest anything amiss. We went for the results on Monday evening and although my husband was fearing the worst I was ever the optimist although every time we've gone for results, being previously reassured all should be well it has always not turned out to be the case so goodness knows where I find optimism from!
The blood tests were fine but the CT scan show 2 very small nodules, one on each lung and also an enlarged lymph node which could all indicated secondary lung cancer but not conclusive. I now have to have a PET scan which we've been able to quickly arrange to have in London tomorrow and should have the results on Friday. This could be inconclusive too but I really hope we know one way or the other soon. We're fully prepared for bad news but dread it at the same time and just can't really think straight at the moment as we don't know what we're dealing with. It doesn't feel real to me at the moment and I seem mostly to be keeping pretty calm. My husband is in a state and finding it very difficult to cope. It is hard to say the right thing or know what we're supposed to be feeling. I know if it is bad news these nodules are very small and I would be lucky to be diagnosed relatively early but I know that in the longterm it's not curable - treatable but not curable. Even those words don't seem real!
Anyway this is a different first entry that the one I wanted to give back in November when things were going well and I was feeling optimistic about the future and even though having a baby might be possible. That's going to be a hard one to let go but life is hard and I just want to enjoy every day as cliched as that might sound!
I'm saying all this and it still may turn out to be benign nodules but after 2 bouts of cancer I just don't think I can count on luck anymore!
Since the Odyssey course I've been doing loads of fitness and love my badminton and running. My schoolfriends can't believe it's the same me!
I've even signed up for the Race For Life in Cardiff in June and have already been pledged over £500. I worry now that I may not be well enough to do it if I'm undergoing treatment by then but I'm determined to do it even if I have to crawl round.
Anyway that's enough for now. I have to keep strong until we know what we're up against.
Since this"journey" with breast cancer began when I was first diagnosed at the end of 2002 aged 32 my husband has been trying to persuade me to keep some sort of diary or written account of what's been happening and how I was feeling. I never felt up to doing that during or after treatment - it was all so raw and I was afraid of really facing my feelings if I had to look at them in black and white!
Anyway as life moved on and following a recurrence last year which was so much more straight forward compared to the first time, I felt life was on the up again after swiftly being able to return to work and "normal life" again so I set up the blog and felt I could give a positive account of life despite breast cancer.
However life has a way of coming and biting you just when you're feeling on your feet again! Firstly, I went on a most amazing 6 day outward bounds type course last September run by a charity called Odyssey for people who have had or have cancer. I was extremely unsporty at school and despite my slim figure have never been into much exercise and have always hated the idea of outdoorsy-based and outward bound type courses so I wasn't sure what I'd make of it. Also the organisers deliberately tell you very limited information about the course - not even exactly where in the UK it is - the whole course runs on the element of surprise and to challenge yourself. It really was a life-changing course for me. There were 10 other women on the course aged from 18-63 and we all got on extremely well and were freely able to share our stories as and when we wanted but there were no therapy groups or anything. I'm not able to say what we did in case anyone reading this gets to go but I'd highly recommend it. It's extremely well-organised and I came back with a renewed confidence and energy and desire to push myself to my limits and a feeling I could do whatever I really wanted to do.
Anyway, since then a lovely lady on that course who was only 33 who seemed full of energy and completely well was diagnosed with secondaries to the lungs just 6 weeks later and sadly died at the end of January this year. Many of us have kept in regular touch by email and this has hit us all very hard. I did not get to her know her that well during the course as she was in another group but she seemed such a positive vibrant person.
It was such a shock that someone who seemed so well and was able to do all the activities easily was to die just 4 months later. It hit both me and my husband very hard as you can't help think the same could happen to me. When you've had cancer you live with the fact it could come back or be in your body every day without you realising it. You come to terms with that and some days you can go without thinking about it but it's always there!
I went for a routine check-up at the beginning of this month and I plucked up courage to ask to be referred to a fertility clinic with an aim to ask to have tests to see whether the chemotherapy I had back in 2003 could have damaged my fertility as we'd been trying for a year without success just before my recurrence last March and then again unsuccessfully for 6 months since finishing my radiotherapy treatment in June 2007. As I've just turned 38 age is not on my side and although I've always been in two minds about even trying for a baby,worried in case the cancer came back or that a pregnancy could even cause it to come back with the surge of oestrogen during pregnancy but my desire to have a baby (maybe selfishly)has always over-ridden my fears!
Anyway the oncologist agreed but he also suggested I had some blood tests which might indicate if any cancer was in my body and also suggested a CT scan as I had not previously any scans.
I had the CT scan last week and was fully expecting everything to be normal as I have had no symptoms to suggest anything amiss. We went for the results on Monday evening and although my husband was fearing the worst I was ever the optimist although every time we've gone for results, being previously reassured all should be well it has always not turned out to be the case so goodness knows where I find optimism from!
The blood tests were fine but the CT scan show 2 very small nodules, one on each lung and also an enlarged lymph node which could all indicated secondary lung cancer but not conclusive. I now have to have a PET scan which we've been able to quickly arrange to have in London tomorrow and should have the results on Friday. This could be inconclusive too but I really hope we know one way or the other soon. We're fully prepared for bad news but dread it at the same time and just can't really think straight at the moment as we don't know what we're dealing with. It doesn't feel real to me at the moment and I seem mostly to be keeping pretty calm. My husband is in a state and finding it very difficult to cope. It is hard to say the right thing or know what we're supposed to be feeling. I know if it is bad news these nodules are very small and I would be lucky to be diagnosed relatively early but I know that in the longterm it's not curable - treatable but not curable. Even those words don't seem real!
Anyway this is a different first entry that the one I wanted to give back in November when things were going well and I was feeling optimistic about the future and even though having a baby might be possible. That's going to be a hard one to let go but life is hard and I just want to enjoy every day as cliched as that might sound!
I'm saying all this and it still may turn out to be benign nodules but after 2 bouts of cancer I just don't think I can count on luck anymore!
Since the Odyssey course I've been doing loads of fitness and love my badminton and running. My schoolfriends can't believe it's the same me!
I've even signed up for the Race For Life in Cardiff in June and have already been pledged over £500. I worry now that I may not be well enough to do it if I'm undergoing treatment by then but I'm determined to do it even if I have to crawl round.
Anyway that's enough for now. I have to keep strong until we know what we're up against.
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