This weekend I have broken the rules. The unwritten rules that I self imposed post surgery and after the realisation that life as I knew it may have to change. These included to stop piling my food with salt and give up red wine (the alcoholic beverage I most abused).
Over the weekend I have eaten a bag of salt and vinegar crisps and had about 3 glasses of red wine.
Now putting this into perspective with my prior vino consumption, not to mention the amount of salt I put in just about everything, it's not the worst thing I could do. However, the morning after I felt bad. Not hungover I hasten to say as although I have resisted wine for over 6 months I dont think my alcohol tolerance has changed that much. That said, it's been a while since I could sink 6 pints of stella and still irish dance!
If I'm honest I know why I gave in to the demon drink (and crisps!) Tomorrow is my 6 month ct scan check and deny as I might, I am a little worried and starting to dread the thought of going back through the tunnel.
This morning when I woke I felt quite guilty for indulging in those things that were on the banned list but given what I used to drink I daresay 'a little bit of what you fancy' really can do you good. I suppose moderation is the key. This minor lapse was more about Dutch courage and the need to relax and forget for a night why I have such Do's and don'ts nowadays.
Tomorrow night my first trip back through the tunnel since being in hospital will be over and hopefully uneventful. Here's hoping I can raise a glass later in thanks.
* Talking of thanks, the Dutch don't only have a remedy for courage - there's a certain lady in that neck of the woods who said the right things at the right time this weekend so thank you Lisanne X
From running a fashion business to waking up one day discovering I have kidney cancer. I have recorded my journey from fashion victim to cancer survivor. From a daily journal I made in hospital, through my recovery & on to the road to fitness I have written of how I found out, what I felt, how I was treated - and what I wore.
Monday, 4 November 2013
Friday, 1 November 2013
Cancer Mind Games
My recent bout of illness somehow stood me still again. The time spent in bed recovering gave way to time thinking about where I'd been on this cancer journey. Moreover it led me to thoughts of where I'm going now.
Having run my own business for so long I am familiar with spending time alone with my thoughts, however they were most often concerning work and how to fit it all in. Now, I have time on my hands which would have been used to plan and put in practice new ideas and designs before my illness. Post cancer those plans seem somehow ridiculous and the ideas are not forthcoming. I just can't seem to figure out why.
Is this a feeling of hopelessness, a fear of planning too far ahead in case I can't complete what I've started or is it more to do with the business I was in, fashion. I'm looking at the industry with almost disdain, is this business really worthy of so much effort I mean, isn't it all just superficial? What lies beneath the fabrics, latest trends, in colours and must have shapes this season.
I'd often made comments about the industry I was in and was quite disparaging about the language used. All the 'rocking this look' and 'working that trend', the whole 'like my page', 'follow me' almost beggar friend mentality that comes with modern day fashionistas. It didn't stop me being part of it though and unfortunately my principals didn't win through - I was as guilty as the next for clocking my followers, likes and comments.
Now I really don't care. Like me or don't, 'heart' my designs or not, it doesn't matter unless you mean it.
Over time while running my business I have entered into many collaborations and put together business plans, worked on projects and taken part in numerous events. Some of these were ongoing when I became unwell and as a result they stopped abruptly. I didn't hesitate when closing my business, the calls were made and within a day my online presence and trading ceased, just like that. It became irrelevant.
Now, faced with picking up the pieces - for which I have no excuse not to - I can't. Having been on the outside looking in I have a much clearer picture and I don't see my place in it. I'd be a hypocrite to criticise those still within that circle as I walked the same walk and talked the same talk but I'm almost cringing as I look back. You might as well say 'It's all about Me' because the fight for online superiority and sales is more like a popularity contest.
Conversely I feel that this time really is all about me and finding out what route to take next but this time I won't be pleading with my followers and 'friends' to come with me.
Is that the voice of experience or is it the experience of cancer that is speaking to me. Stripped of my fashionista image, lying in a hospital bed attached to numerous machines I thought little about the cancer inside me. Now, seven months on with recovery going well I think about it more. Let's face it, I'd been carrying that tumor around with me a fair few years according to medical science. Me and my cancer had done a few Clothes Shows's, arranged a fair few fashion events and strutted about town in our glad rags for a while. Perhaps that's it, I can't separate the cancer from the business, I have to allocate blame. I was told to give it a name when it was discovered but I couldn't and now it's become all the things I worked for that were never to be.
I wonder is this common for other cancer survivors? Is the fashion industry really so disdainful or is my reaction a natural response to the shock of having cancer. Had I worked in any other sector would I have the same disrespect for my previous career?
All I do know is that the scars are taking longer to heal than I expected and they run a lot deeper than I knew.
Having run my own business for so long I am familiar with spending time alone with my thoughts, however they were most often concerning work and how to fit it all in. Now, I have time on my hands which would have been used to plan and put in practice new ideas and designs before my illness. Post cancer those plans seem somehow ridiculous and the ideas are not forthcoming. I just can't seem to figure out why.
Is this a feeling of hopelessness, a fear of planning too far ahead in case I can't complete what I've started or is it more to do with the business I was in, fashion. I'm looking at the industry with almost disdain, is this business really worthy of so much effort I mean, isn't it all just superficial? What lies beneath the fabrics, latest trends, in colours and must have shapes this season.
I'd often made comments about the industry I was in and was quite disparaging about the language used. All the 'rocking this look' and 'working that trend', the whole 'like my page', 'follow me' almost beggar friend mentality that comes with modern day fashionistas. It didn't stop me being part of it though and unfortunately my principals didn't win through - I was as guilty as the next for clocking my followers, likes and comments.
Now I really don't care. Like me or don't, 'heart' my designs or not, it doesn't matter unless you mean it.
Over time while running my business I have entered into many collaborations and put together business plans, worked on projects and taken part in numerous events. Some of these were ongoing when I became unwell and as a result they stopped abruptly. I didn't hesitate when closing my business, the calls were made and within a day my online presence and trading ceased, just like that. It became irrelevant.
Now, faced with picking up the pieces - for which I have no excuse not to - I can't. Having been on the outside looking in I have a much clearer picture and I don't see my place in it. I'd be a hypocrite to criticise those still within that circle as I walked the same walk and talked the same talk but I'm almost cringing as I look back. You might as well say 'It's all about Me' because the fight for online superiority and sales is more like a popularity contest.
Conversely I feel that this time really is all about me and finding out what route to take next but this time I won't be pleading with my followers and 'friends' to come with me.
Is that the voice of experience or is it the experience of cancer that is speaking to me. Stripped of my fashionista image, lying in a hospital bed attached to numerous machines I thought little about the cancer inside me. Now, seven months on with recovery going well I think about it more. Let's face it, I'd been carrying that tumor around with me a fair few years according to medical science. Me and my cancer had done a few Clothes Shows's, arranged a fair few fashion events and strutted about town in our glad rags for a while. Perhaps that's it, I can't separate the cancer from the business, I have to allocate blame. I was told to give it a name when it was discovered but I couldn't and now it's become all the things I worked for that were never to be.
I wonder is this common for other cancer survivors? Is the fashion industry really so disdainful or is my reaction a natural response to the shock of having cancer. Had I worked in any other sector would I have the same disrespect for my previous career?
All I do know is that the scars are taking longer to heal than I expected and they run a lot deeper than I knew.
Wednesday, 23 October 2013
Back to Bed
I don't feel very well...
How many times have I said that in the past, when I've had a cold or a bug of some kind and usually it is just that and after a few days I'm back to right. However a week or so ago when I started to feel poorly I said nothing. As I began to feel worse and this became evident to my family I had to admit something was wrong. In the past - by that I mean pre cancer, there was a rational voice in my head telling me that it was probably just a virus and I'd be feeling much better soon. However, this being the first time I've been ill since well, being ill...the voice in my head was more than a little irrational.
As documented in this blog, I have suffered with back pain since surgery and this is on the side that I have a remaining kidney. Last week the pain increased and I felt very sick, I was also quite feverish and lacked energy. It got so bad I had to take to my bed which was strange as I was transported back 6 months to when I spent a lot of time there in pain. In the same way that things often seem worse at night, I felt worse being in bed unable to do anything and my mind worked overtime. What if it is back?!
A trip to my GP was inconclusive as there really wasn't anything he could do as my symptoms could mean a virus. Also with a CT scan in the next couple of weeks it was best to see the outcome of that. He was extremely understanding and could see I was feeling awful though and asked me to return this week (which I will).
Yesterday was the first day I've felt relatively good again and today is that little bit better. I've shaken off the 'sorry for myself' feeling and put to bed the negative thoughts, a lot of which came when I was feeling my worst. The pain has eased and apart from the usual backache I'm not too bad at all. I've not eaten much for a week as my appetite disappeared and I've lost about half a stone which I didn't need to.
I will have to rethink my dietry changes now as although I'm sure they weren't the cause of this latest illness, my health hasn't improved by eating healthier foods. Maybe moderation will have to be my new mantra.
Either way I'm happy to be feeling well again and thankful all over again for my health.
Friday, 11 October 2013
Bone Scan
By the time I went for my bone scan I had stopped writing in my journal so this is from memory. The scan took place in May about 2 months after my surgery and was recommended by the consultant surgeon due to continuing back pain.
I turned up at Good Hope hospital that morning with my daughter and was taken into a small room in the Nuclear Medicine Dept where a nurse put a canular into the back of my wrist. Once that was done a specialist came and proceeded to pump in something she referred to as 'stuff' and said it was the best way to describe it. The 'stuff' would flow around my body and enable the scanner to pick up what it needed from my bones (or something like that). Obviously I am not familiar with any of the technical detail of what is involved so if you want to know more check out this piece on patient.co.uk
Once the stuff was flowing around my bones I was allowed to leave the hospital for approx 90 minutes during which time I was advised to drink plenty and most importantly 'keep away from small children/babies and expectant mothers'. Apparently this was due to the slight risk of radiation I was carrying which would mean I could give off gamma rays. For the next few hours I was a SuperHero...
With time to kill we went off to have lunch in the nearest Wetherspoons where I sat near a door and looked menacingly at any parents with children or ladies with large stomachs (the fat or pregnant question arose often...)
Back at the hospital I was taken into the room with the scanner and asked to climb on the bed, fully clothed. The specialist then explained that the scanner would come down so close to me it would nearly touch my face and that I shouldn't feel alarmed. She then made sure I was positioned correctly and left the room. For the next 20 minutes I had to lie perfectly still while this huge machine lowered itself down and moved across my body, it was a bit freaky and although I'm not claustraphobic I felt as though I was going to be crushed!
When the scanner had taken all the images it needed the specialist returned to the room and I was told I could leave. Before I went she told me that when going for a wee I must flush the toilet twice after myself as a small amount of radiation may be left, bizarre! Also, I must steer clear from Mums to be and little ones for the next 48 hours.
That night I had the feeling I may be glowing in the dark but no special super hero powers presented themselves.
The results of the scan took a few weeks to arrive and as the saying goes, 'no news is good news' I was sure had there been anything wrong I would have heard. About 6 weeks later, which was over 3 months post surgery I received a letter. It was from the consultant and contained the information I'd asked for about my operation 3 months ago, seriously! It was brief and to the point AND at the bottom of the letter in hand writing was scrawled, 'bone scan normal'. Now I have to emphasize once more, I am more than happy with the work of the consultant and his team and extremely thankfully to them. However, when it comes to information and the way it is given, the words 'could try harder' spring to mind.
The main thing was that my bone scan had been clear which was excellent news. Unfortunately, the back pain continues so of course does this blog...
I turned up at Good Hope hospital that morning with my daughter and was taken into a small room in the Nuclear Medicine Dept where a nurse put a canular into the back of my wrist. Once that was done a specialist came and proceeded to pump in something she referred to as 'stuff' and said it was the best way to describe it. The 'stuff' would flow around my body and enable the scanner to pick up what it needed from my bones (or something like that). Obviously I am not familiar with any of the technical detail of what is involved so if you want to know more check out this piece on patient.co.uk
Once the stuff was flowing around my bones I was allowed to leave the hospital for approx 90 minutes during which time I was advised to drink plenty and most importantly 'keep away from small children/babies and expectant mothers'. Apparently this was due to the slight risk of radiation I was carrying which would mean I could give off gamma rays. For the next few hours I was a SuperHero...
With time to kill we went off to have lunch in the nearest Wetherspoons where I sat near a door and looked menacingly at any parents with children or ladies with large stomachs (the fat or pregnant question arose often...)
Back at the hospital I was taken into the room with the scanner and asked to climb on the bed, fully clothed. The specialist then explained that the scanner would come down so close to me it would nearly touch my face and that I shouldn't feel alarmed. She then made sure I was positioned correctly and left the room. For the next 20 minutes I had to lie perfectly still while this huge machine lowered itself down and moved across my body, it was a bit freaky and although I'm not claustraphobic I felt as though I was going to be crushed!
When the scanner had taken all the images it needed the specialist returned to the room and I was told I could leave. Before I went she told me that when going for a wee I must flush the toilet twice after myself as a small amount of radiation may be left, bizarre! Also, I must steer clear from Mums to be and little ones for the next 48 hours.
That night I had the feeling I may be glowing in the dark but no special super hero powers presented themselves.
The results of the scan took a few weeks to arrive and as the saying goes, 'no news is good news' I was sure had there been anything wrong I would have heard. About 6 weeks later, which was over 3 months post surgery I received a letter. It was from the consultant and contained the information I'd asked for about my operation 3 months ago, seriously! It was brief and to the point AND at the bottom of the letter in hand writing was scrawled, 'bone scan normal'. Now I have to emphasize once more, I am more than happy with the work of the consultant and his team and extremely thankfully to them. However, when it comes to information and the way it is given, the words 'could try harder' spring to mind.
The main thing was that my bone scan had been clear which was excellent news. Unfortunately, the back pain continues so of course does this blog...
Tuesday, 8 October 2013
The Ketogenic Diet Begins...
Until now I have never been on a diet. Nor have I entered a gym. Exercise for me was part of daily life, working, walking, cleaning, dog walking etc. I suppose I have been fortunate not to have needed to exercise for weight loss or health gain but only for pleasure and necessity.
Now however, I am having to watch what I eat and drink, not only because I have one remaining kidney to take care of but also to ensure I don't gain weight as a result of lack of exercise. Since having cancer I have not returned to 'business as usual' in as much as I can't walk, work, clean or dog walk at the same rate as before. At my age (45) it is inevitable that I will start gaining weight - in all the wrong places IF I don't do something about it.
Lately I have benefited from others going through the same, in particular Lisanne Vos' Blog RUKidneyingMe which includes health tips and recipies for a healthy life in the 'Mono Kidney Club'. Another source of healthy knowledge has come from Elaine Cantin's book The Cantin Ketogenic Diet - for Cancer, Type1 Diabetes & other ailments. This book has been kindly lent to me by Sharon Fox Cancer Centre I have also gained a wealth of useful dietary information from the James Whale Kidney Cancer Fund site
I must admit, I am still a believer in the philosphy that 'A little bit of what you fancy does you good' BUT I am currently taking advice from these sources and using what I can. From this I will record the dietary changes I can make and hopefully stick to in order to improve my healthy diet.
So, here I go and first on the Prohibited Food List is Alcohol, one of the benefits of which will be that I'll not sing on a karaoke without it again...!
Ok what's next...
Now however, I am having to watch what I eat and drink, not only because I have one remaining kidney to take care of but also to ensure I don't gain weight as a result of lack of exercise. Since having cancer I have not returned to 'business as usual' in as much as I can't walk, work, clean or dog walk at the same rate as before. At my age (45) it is inevitable that I will start gaining weight - in all the wrong places IF I don't do something about it.
Lately I have benefited from others going through the same, in particular Lisanne Vos' Blog RUKidneyingMe which includes health tips and recipies for a healthy life in the 'Mono Kidney Club'. Another source of healthy knowledge has come from Elaine Cantin's book The Cantin Ketogenic Diet - for Cancer, Type1 Diabetes & other ailments. This book has been kindly lent to me by Sharon Fox Cancer Centre I have also gained a wealth of useful dietary information from the James Whale Kidney Cancer Fund site
I must admit, I am still a believer in the philosphy that 'A little bit of what you fancy does you good' BUT I am currently taking advice from these sources and using what I can. From this I will record the dietary changes I can make and hopefully stick to in order to improve my healthy diet.
So, here I go and first on the Prohibited Food List is Alcohol, one of the benefits of which will be that I'll not sing on a karaoke without it again...!
Ok what's next...
Thursday, 3 October 2013
Sharon Fox Cancer Centre on Surprise Surprise
If you have been following my blog so far you may be interested to see the Sharon Fox's appearance last weekend on prime time UK TV Show Surprise Surprise
If you would like to support the centre by purchasing a calender you can visit the site here at Sharon Fox Cancer Centre
You can also listen to Sharon's interview on local radio TCRFM
If you would like to support the centre by purchasing a calender you can visit the site here at Sharon Fox Cancer Centre
You can also listen to Sharon's interview on local radio TCRFM
The Sharon Fox Cancer Centre Tamworth
I hesitated at putting the title 'Coming Out' for this post as for me, admitting to and telling people about my illness was a big thing to do. Having kept my cancer news on a 'need to know' basis, for several weeks only closest family and friends were aware. Eventually I used the necessary evil that is Facebook to post a brief 'guess where I've been...kind of message' as this would filter to both friends and acquaintances which in turn meant I wouldn't have to tell them personally. The response shocked me, so many people left lovely messages and sent kind wishes, I was quite overwhelmed.
The next step was to get back out and about, I wasn't back to work and so needed to show my face and start going about normal life again. Having run a creative business I was aware that the local cancer charity centre, run by breast cancer patient Sharon Fox held an Arts & Crafts morning once a week. I figured I could go along and get involved, maybe help out. I'd visited the centre before my illness a couple of times but then it was to drop donations or concerning involvement with the charity as a business. This was different - now I was one of the gang!
Sharon was aware I'd had cancer and had herself left a lovely message in response to my facebook 'announcement' so I contacted her beforehand about joining that weeks group. When I arrived outside the centre I was suddenly overcome with all kinds of emotions, fear, anxiety, sadness and panic set in. Once I step through that door they know, I've had cancer. I'm not dropping off a donation, I'm not running a workshop, I'm there because I've had cancer. It was as if the news had hit me all over again and the denial I'd been in was futile, the people behind this door could see through the bravado because they'd been here too.
As I stood outside another lady arrived and as if via telepathy greeted me and opened the door, ushered me in as if we were old friends. Once inside Sharon was there and I was effortlessly introduced to the ladies present (no mention of the C word) just that I was joining in the session that morning. We stood and chatted and then went through to the room where Maggie, who was there to help proceeded to show me some of the art they were working on. So far so good. It was warm and relaxed and I was talking about things I could relate to.
Then it hit again and I can't explain what or why. It was as though I was looking at the activity and hearing the chatter from a distance. The tears started to fall (incidently they are falling now even thinking about it) and I stood and cried. For the first time, outside of my home or a hospital bed the emotion was overwhelming and I let go of some of the fear I'd been hiding.
Maggie comforted me and said all the right things before another couple of ladies offered me a seat in the office for a chat about how I could help when in fact, they were helping me. By this time I was able to articulate how I felt but no explanation was needed as again, they knew. I don't think I made any firm offers of help that day but by the time I left I was strangely empowered. I'd done two of the things that I hadn't done yet, cried in public and talked openly about my experience and I was ok. 'It' was ok. Cancer had taken my kidney and knocked my health about somewhat but I was still here.
Since that visit I have returned to the centre. Admittedly one of those visits was spent in the car park and I didn't leave the car....bad day. However, on the other occasions I wasn't the 'new girl' and saw first hand both men and women enter the centre and speak of their illness, this is a most humbling experience. To witness the work done at Sharon Fox Cancer Centre is emotional whether you are a patient, carer, volunteer or visitor you can't help but feel part of this wonderful place.
This is my way of saying thank you.
Sharon Fox Cancer Centre
The next step was to get back out and about, I wasn't back to work and so needed to show my face and start going about normal life again. Having run a creative business I was aware that the local cancer charity centre, run by breast cancer patient Sharon Fox held an Arts & Crafts morning once a week. I figured I could go along and get involved, maybe help out. I'd visited the centre before my illness a couple of times but then it was to drop donations or concerning involvement with the charity as a business. This was different - now I was one of the gang!
Sharon was aware I'd had cancer and had herself left a lovely message in response to my facebook 'announcement' so I contacted her beforehand about joining that weeks group. When I arrived outside the centre I was suddenly overcome with all kinds of emotions, fear, anxiety, sadness and panic set in. Once I step through that door they know, I've had cancer. I'm not dropping off a donation, I'm not running a workshop, I'm there because I've had cancer. It was as if the news had hit me all over again and the denial I'd been in was futile, the people behind this door could see through the bravado because they'd been here too.
As I stood outside another lady arrived and as if via telepathy greeted me and opened the door, ushered me in as if we were old friends. Once inside Sharon was there and I was effortlessly introduced to the ladies present (no mention of the C word) just that I was joining in the session that morning. We stood and chatted and then went through to the room where Maggie, who was there to help proceeded to show me some of the art they were working on. So far so good. It was warm and relaxed and I was talking about things I could relate to.
Then it hit again and I can't explain what or why. It was as though I was looking at the activity and hearing the chatter from a distance. The tears started to fall (incidently they are falling now even thinking about it) and I stood and cried. For the first time, outside of my home or a hospital bed the emotion was overwhelming and I let go of some of the fear I'd been hiding.
Maggie comforted me and said all the right things before another couple of ladies offered me a seat in the office for a chat about how I could help when in fact, they were helping me. By this time I was able to articulate how I felt but no explanation was needed as again, they knew. I don't think I made any firm offers of help that day but by the time I left I was strangely empowered. I'd done two of the things that I hadn't done yet, cried in public and talked openly about my experience and I was ok. 'It' was ok. Cancer had taken my kidney and knocked my health about somewhat but I was still here.
Since that visit I have returned to the centre. Admittedly one of those visits was spent in the car park and I didn't leave the car....bad day. However, on the other occasions I wasn't the 'new girl' and saw first hand both men and women enter the centre and speak of their illness, this is a most humbling experience. To witness the work done at Sharon Fox Cancer Centre is emotional whether you are a patient, carer, volunteer or visitor you can't help but feel part of this wonderful place.
This is my way of saying thank you.
Sharon Fox Cancer Centre
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