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
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.
Thursday, 3 October 2013
Wednesday, 2 October 2013
The Verdict
I've returned to where I left off with my kidney cancer journey and having had to revisit hospital with a suspected blood clot after my surgery, I was determined to steer clear of the place for a while. However, I was still anxious to see the consultant surgeon who had performed my nephrectomy and find out if they had discovered anything from the subsequent biopsy of my tumor. This appointment seemed ages arriving, it was actually 6 weeks but the time dragged as in between there was no one to give the answers I needed.
The appointment was at Solihull Hospital and it was at a urology clinic. After a wait of over 3 hours (yes 3) my name was called and I was finally sat opposite the man who had saved my life and removed the cancer and my kidney. We had met previously of course but this was different, this time I was minus a tumor and out of a hospital bed.
The consultant examined my wound and read the notes from the previous admission for suspected blood clot and wound infection. The scarring wasn't pretty but he was satisfied it was now healing well. He asked questions about my general health and well being which were difficult to answer as I wasn't sure if how I felt was good or bad considering my surgery. Personally I still felt pretty rough and was in a lot of pain from my back - conversely the opposite side. The consultant though said this was all relative to what I had been through although he was concerned about my back pain. He didn't think it had anything to do with the surgery and recommended a bone scan as a precaution.
Then it was our chance to ask questions, my husband was with me which was wonderful as during my admissions and diagnosis all news had been broken to me alone - not by choice. We asked the obvious questions, 'has the cancer all gone' and 'will there be any more treatment'? The answers were pretty much what had been said previously, the tumor was encapsulated in the kidney and had been removed whole, therefore it should be all gone. While 'in there' they had poked around to check surrounding organs and no evidence was found of anything else sinister. As kidney cancer is not generally treated with chemotherapy or radiotherapy there would be no further treatment but I would need to return for regular check ups and CT scans. When asked how long this would be for we were told, 'as long as there's a national health service - indefinately'. I was of course now a renal patient as well as a cancer patient so this I suppose made sense and was reassuring, I was on the radar!
The BIG question of 'is there a chance it has spread' was answered in this way. The consultant took a pen and paper and made a dot on the paper, he said, 'right now there could be a tumor this size inside you, we wouldn't pick it up on a scan and you wouldn't know it was there. You have the choice to leave here and worry endlessly about that or you can choose to go out and carry on living your life as best you can. I suggest the latter'.
Well, that may sound abrupt and a bit too graphic but, it's true. He went on to say that so many elements of our daily life can cause that one cell to go wrong, what we eat, drink, breathe etc. I was at least going to be closely monitored and lets face it, had been walking around for God knows how many years carrying the cancer inside unknowing.
Another BIG question was of course, 'how did it get there?'. I mean, obviously I don't want it back and I wanted to find out if my lifestyle could have had any effect or, more to the point how I could possibly avoid a recurrence. At this stage I was still pretty ignorant of kidney cancer and knew only the statistical figures and they told me it was uncommon in women of my age and was not a well known cancer compared to others. The consultant gave another succinct answer... He said, 'walk into any children's ward where you may find young people suffering with cancer and ask yourself the same question, why them, how come, what caused this?' In other words, if we knew the answers we'd all be better qualified to avoid this awful disease, sometimes there just aren't any reasonable answers and if there are, it's often guesswork.
I left that day together with my husband in the knowledge that everything that could have been done, had been done and nothing was being left to chance. We realised why our wait had been so long, the consultant had spent time explaining thoroughly all we wanted to know, no complaints there.
The next step was a bone scan. In the meantime I could worry about that small dot on the paper that could be inside right now OR I could get on with the life I'd been given thanks to medical intervention and thank God I was here.
I chose the latter.
The appointment was at Solihull Hospital and it was at a urology clinic. After a wait of over 3 hours (yes 3) my name was called and I was finally sat opposite the man who had saved my life and removed the cancer and my kidney. We had met previously of course but this was different, this time I was minus a tumor and out of a hospital bed.
The consultant examined my wound and read the notes from the previous admission for suspected blood clot and wound infection. The scarring wasn't pretty but he was satisfied it was now healing well. He asked questions about my general health and well being which were difficult to answer as I wasn't sure if how I felt was good or bad considering my surgery. Personally I still felt pretty rough and was in a lot of pain from my back - conversely the opposite side. The consultant though said this was all relative to what I had been through although he was concerned about my back pain. He didn't think it had anything to do with the surgery and recommended a bone scan as a precaution.
Then it was our chance to ask questions, my husband was with me which was wonderful as during my admissions and diagnosis all news had been broken to me alone - not by choice. We asked the obvious questions, 'has the cancer all gone' and 'will there be any more treatment'? The answers were pretty much what had been said previously, the tumor was encapsulated in the kidney and had been removed whole, therefore it should be all gone. While 'in there' they had poked around to check surrounding organs and no evidence was found of anything else sinister. As kidney cancer is not generally treated with chemotherapy or radiotherapy there would be no further treatment but I would need to return for regular check ups and CT scans. When asked how long this would be for we were told, 'as long as there's a national health service - indefinately'. I was of course now a renal patient as well as a cancer patient so this I suppose made sense and was reassuring, I was on the radar!
The BIG question of 'is there a chance it has spread' was answered in this way. The consultant took a pen and paper and made a dot on the paper, he said, 'right now there could be a tumor this size inside you, we wouldn't pick it up on a scan and you wouldn't know it was there. You have the choice to leave here and worry endlessly about that or you can choose to go out and carry on living your life as best you can. I suggest the latter'.
Well, that may sound abrupt and a bit too graphic but, it's true. He went on to say that so many elements of our daily life can cause that one cell to go wrong, what we eat, drink, breathe etc. I was at least going to be closely monitored and lets face it, had been walking around for God knows how many years carrying the cancer inside unknowing.
Another BIG question was of course, 'how did it get there?'. I mean, obviously I don't want it back and I wanted to find out if my lifestyle could have had any effect or, more to the point how I could possibly avoid a recurrence. At this stage I was still pretty ignorant of kidney cancer and knew only the statistical figures and they told me it was uncommon in women of my age and was not a well known cancer compared to others. The consultant gave another succinct answer... He said, 'walk into any children's ward where you may find young people suffering with cancer and ask yourself the same question, why them, how come, what caused this?' In other words, if we knew the answers we'd all be better qualified to avoid this awful disease, sometimes there just aren't any reasonable answers and if there are, it's often guesswork.
I left that day together with my husband in the knowledge that everything that could have been done, had been done and nothing was being left to chance. We realised why our wait had been so long, the consultant had spent time explaining thoroughly all we wanted to know, no complaints there.
The next step was a bone scan. In the meantime I could worry about that small dot on the paper that could be inside right now OR I could get on with the life I'd been given thanks to medical intervention and thank God I was here.
I chose the latter.
Tuesday, 24 September 2013
Climb Every Mountain
Apologies for the cringy title...it just had to be!
Most years we go to Wales and when there we always find time to climb up into the mountains where we have our favourite places. Wales has many hidden treasures and amongst them are it's blue lagoons, old slate mine shafts dug high up into the mountains and now filled with water. To get to them involves a steep climb followed by negotiating your way through a small tunnel cut into the mountainside that leads to the inner lagoon. Alternatively your can scramble to the top of the mountain and look down into the pool.
This year I was determined to repeat this visit and spend some time by the side of one of these beautiful, tranquil lagoons, however whether I'd make the climb was another matter.
Well, I did it!
It took a little longer than usual but once there was worth all the effort. While I sat by the lagoon I was able to look back at the struggle I'd had over the past 6 months with some perspective. It has been hard up till now to think about the weeks that followed the discovery of my cancer and I have preferred to forget it. Writing this blog has helped tremendously as not only have I put into words the way I felt and the things that happened but also, I have heard from others who have gone through/going through the same.
Looking back from the top of a mountain I was finally able to see the journey I've made. I can now place myself back at those difficult moments and see that time does heal and the journey gets easier.
More importantly, it doesn't end here.
Most years we go to Wales and when there we always find time to climb up into the mountains where we have our favourite places. Wales has many hidden treasures and amongst them are it's blue lagoons, old slate mine shafts dug high up into the mountains and now filled with water. To get to them involves a steep climb followed by negotiating your way through a small tunnel cut into the mountainside that leads to the inner lagoon. Alternatively your can scramble to the top of the mountain and look down into the pool.
This year I was determined to repeat this visit and spend some time by the side of one of these beautiful, tranquil lagoons, however whether I'd make the climb was another matter.
Well, I did it!
Looking back from the top of a mountain I was finally able to see the journey I've made. I can now place myself back at those difficult moments and see that time does heal and the journey gets easier.
More importantly, it doesn't end here.
Friday, 13 September 2013
Six Months Ago Today
When I woke on 13th March 2013 I don't remember feeling unwell. Before that day I'd not complained of being ill, no backache, bleeding or any other symptoms connected with kidney cancer.
I went to the toilet for a wee and discovered I was bleeding which I knew was unusual but still wasn't overly concerned, more puzzled. When I returned to bed I remember clearly saying to my husband, 'I don't think I'm very well'. then the strangest thing was I started crying. I agreed I'd go to the doctor that morning, got myself together and went downstairs to carry on preparing for the day ahead.
Ten minutes later I collapsed. Actually it was more a slide as this enormous pain hit me in the side like none I've ever felt before and I slid down the cupboards in the kitchen. It was like a dead weight in my left side and I could hardly move and so started to drag myself across the kitchen floor. Our two dogs were obviously confused by this and followed me along patting and licking me!
When I reached the bottom of the stairs I was able to call my husband who rushed down and so began this journey, from a pain in the side, via 3 hospitals to a diagnosis of kidney cancer in 24 hours.
The rest is written in this blog. My first experience of hospital (other than giving birth there), cathaters, canulars and irrigation systems - oh the glamour of it all. From a career amongst fashionistas and superficial conversation to sharing my days with elderly poorly ladies discussing bowel movements.
Here and now I'm doing ok and feel the need to get back on track with my life more than ever. I am nagged by a pain in my back which is conversely on the opposite side to where my kidney was removed but this is being investigated. Other than that I'm relatively fine, a bit limpy, a bit bored having closed my business but very relieved that the cancer was found and removed. I was lucky.
As for questions I have loads. I knew nothing of this disease before it hit me. Cancer has affected my life in the form of my Mother's breast cancer but I didn't worry it'd get me. As I've written in my blog I have asked lots of questions, how long was it there, what caused it, what could prevent it, should I change diet....on and on but the answers didn't come from the doctors that cared for me in hospital, there job was to make me better. I have received excellent care from my GP but more answers came from the James Whale Fund for kidney cancer.
I avoided the internet for some time after refusing to Google my condition in case I heard stuff I didn't like. The doctor recommended patient.co.uk and I tried MacMillan both of which were helpful but the real insight came from the JWF and I am very thankful.
My business was very reliant on social networking and when this cancer struck me suddenly I quickly closed my business and came offline. I am very private generally about my personal life, the social network was mainly my business persona. When I started this blog, written from my hospital diary I took it offline 3 times before having the courage to leave it live. This was mainly due to the comments and messages of support and thanks I received for telling my story. This has made a huge difference to the way I am dealing with what has happened in a positive way.
Today is a milestone, one I need to stop and think carefully about to decide how I move forward because that is the only way now. I'll sign off for a week while I make those decisions and when I come back it can only be stronger. I have had kidney cancer and beaten it thanks to the wonderful medical team, my family, my friends and in it's own way, the social network that has given me a voice to say how I feel.
Grateful.
I went to the toilet for a wee and discovered I was bleeding which I knew was unusual but still wasn't overly concerned, more puzzled. When I returned to bed I remember clearly saying to my husband, 'I don't think I'm very well'. then the strangest thing was I started crying. I agreed I'd go to the doctor that morning, got myself together and went downstairs to carry on preparing for the day ahead.
Ten minutes later I collapsed. Actually it was more a slide as this enormous pain hit me in the side like none I've ever felt before and I slid down the cupboards in the kitchen. It was like a dead weight in my left side and I could hardly move and so started to drag myself across the kitchen floor. Our two dogs were obviously confused by this and followed me along patting and licking me!
When I reached the bottom of the stairs I was able to call my husband who rushed down and so began this journey, from a pain in the side, via 3 hospitals to a diagnosis of kidney cancer in 24 hours.
The rest is written in this blog. My first experience of hospital (other than giving birth there), cathaters, canulars and irrigation systems - oh the glamour of it all. From a career amongst fashionistas and superficial conversation to sharing my days with elderly poorly ladies discussing bowel movements.
Here and now I'm doing ok and feel the need to get back on track with my life more than ever. I am nagged by a pain in my back which is conversely on the opposite side to where my kidney was removed but this is being investigated. Other than that I'm relatively fine, a bit limpy, a bit bored having closed my business but very relieved that the cancer was found and removed. I was lucky.
As for questions I have loads. I knew nothing of this disease before it hit me. Cancer has affected my life in the form of my Mother's breast cancer but I didn't worry it'd get me. As I've written in my blog I have asked lots of questions, how long was it there, what caused it, what could prevent it, should I change diet....on and on but the answers didn't come from the doctors that cared for me in hospital, there job was to make me better. I have received excellent care from my GP but more answers came from the James Whale Fund for kidney cancer.
I avoided the internet for some time after refusing to Google my condition in case I heard stuff I didn't like. The doctor recommended patient.co.uk and I tried MacMillan both of which were helpful but the real insight came from the JWF and I am very thankful.
My business was very reliant on social networking and when this cancer struck me suddenly I quickly closed my business and came offline. I am very private generally about my personal life, the social network was mainly my business persona. When I started this blog, written from my hospital diary I took it offline 3 times before having the courage to leave it live. This was mainly due to the comments and messages of support and thanks I received for telling my story. This has made a huge difference to the way I am dealing with what has happened in a positive way.
Today is a milestone, one I need to stop and think carefully about to decide how I move forward because that is the only way now. I'll sign off for a week while I make those decisions and when I come back it can only be stronger. I have had kidney cancer and beaten it thanks to the wonderful medical team, my family, my friends and in it's own way, the social network that has given me a voice to say how I feel.
Grateful.
Thursday, 12 September 2013
Remember Me?
Thought I'd just remind people (and myself) of who I was 6 months ago.
Here's the 'About Me' from my website - seems a long time ago...
Here's the 'About Me' from my website - seems a long time ago...
3 canulars, 2 Xrays & A CT Scan
No sleep.
Not sure whether it's the pain, the anxiety or the fact I'm in this island of a bed in a high dependancy room surrounded by windows that I can't see out of. Periodically the blinds at the windows move as staff peep in to check on me, spooky. It's eerily quiet compared to normal wards apart from beeps of machines. My fellow patients are either really poorly and can't move or like me, afraid to move from the island bed in the centre of the room. It was like Big Brother was watching.
The bed was electronic and moved all ways at the touch of a button which was cool but being in the middle of the room there was nowhere to put anything. When admitted I was fully dressed and this is how I slept with my bag in bed with me! I crept out for a wee in the night but was still in pain so couldn't move fast enough to avoid staff seeing and coming to my aid. Good you may think but I just wanted to go home so didn't want a fuss in case they kept me.
In the morning a wheelchair was brought in and I was once again taken down for a ct scan. The staff shortages meant a member of the admin team had to accompany me, she wasn't very good humoured.
Once in radiology they tested my canular and surprise surprise it wasn't working, it was tissuing AGAIN! OUCH! Another one was put in and I was sent once more through the ct scanner tunnel.
A few anxious hours wait till the results were sent up and thankfully no blood clot was found. I was given more medication and discharged later that afternoon. Exhausted.
Wednesday, 11 September 2013
4 weeks post Surgery - Back to Hospital
I've now stopped writing my diary daily, I think mainly due to the fact that the days merge together as I'm not able to really do anything.
Ten days after surgery while recovering at home I received a visit from the district nurse following a call by my daughter (herself a nurse) who was concerned about my wound. The nurse was puzzled by the huge 'slug like' blister next to my wound and said all she could really do was re-dress it. She said that all things considered I was doing pretty well and passed me a couple of numbers to call if I was worried.
My diary then jumps 2 weeks.
The last couple of days I have not felt good, the pain has not eased and my back is especially sore. The thing bothering me most is shortness of breath, even climbing the stairs leaves me out of breath. I'm feeling quite faint and very tired.
The district nurse returned to look at my wound, she took a swab and said it looked infected. She was more concerned that I was short of breath and made an appointment for me to see a doctor that day.
Although I know I need to go I'm upset as I have made an appointment to go to the doctor later in the week with my husband to hear the results of my biopsy.
I don't want to receive this news on my own and get quite tearful as I've been alone when receiving all the bad news so far. Not that my husband wouldn't or couldn't be there but that the doctors have just 'come out with it'.
The district nurse says she would ensure the doctor would not disclose my biopsy results but that I would have to go today.
At the doctors I was examined and to my shock told I would have to go immediately back to hospital as there was a chance I had a blood clot. As my daughter had taken me she said she would drive me to hospital and stay till my husband arrived, I didn't want another ambulance trip. By now I was really upset.
Once back at A&E I was admitted and obs carried out. My blood pressure was very low and I had blood taken. The canular they used was green - please note, if anyone comes near you with a green canular question WHY! When he put it in the back of my hand the pain was excrutiating and I couldn't bend my wrist. I later learnt from a sympathetic nurse that green canulars are the largest and used when a large amount of drugs needs pumping in quickly. Why he thought I needed one I don't know?! Thankfully the nurse called another doctor to remove and replace it with a smaller one. Unfortunately he missed the vein and the drugs began tissuing (pumping into tissue rather than vein). As you can imagine by now my hand was black and blue!
Once sorted with canular I was sent to xray where the radiographer questioned me having another ct scan explaining that having only one kidney left it has to work harder to filter the dye around. I was brimming with confidence by this time...
My husband arrived later that evening and sat with me for a further 5 hours till I was admitted - I'd been on a trolley for 8 and a half hours. I hadn't anticipated my next stop, the wards were overflowing and I was sent to the High Dependancy Unit as the ct scanner wasn't available. I now have to spend a night on my own in a high dependancy bed surrounded by huge equipment and shuttered windows that staff peep though regularly. Weird.
Ten days after surgery while recovering at home I received a visit from the district nurse following a call by my daughter (herself a nurse) who was concerned about my wound. The nurse was puzzled by the huge 'slug like' blister next to my wound and said all she could really do was re-dress it. She said that all things considered I was doing pretty well and passed me a couple of numbers to call if I was worried.
My diary then jumps 2 weeks.
The last couple of days I have not felt good, the pain has not eased and my back is especially sore. The thing bothering me most is shortness of breath, even climbing the stairs leaves me out of breath. I'm feeling quite faint and very tired.
The district nurse returned to look at my wound, she took a swab and said it looked infected. She was more concerned that I was short of breath and made an appointment for me to see a doctor that day.
Although I know I need to go I'm upset as I have made an appointment to go to the doctor later in the week with my husband to hear the results of my biopsy.
I don't want to receive this news on my own and get quite tearful as I've been alone when receiving all the bad news so far. Not that my husband wouldn't or couldn't be there but that the doctors have just 'come out with it'.
The district nurse says she would ensure the doctor would not disclose my biopsy results but that I would have to go today.
At the doctors I was examined and to my shock told I would have to go immediately back to hospital as there was a chance I had a blood clot. As my daughter had taken me she said she would drive me to hospital and stay till my husband arrived, I didn't want another ambulance trip. By now I was really upset.
Once back at A&E I was admitted and obs carried out. My blood pressure was very low and I had blood taken. The canular they used was green - please note, if anyone comes near you with a green canular question WHY! When he put it in the back of my hand the pain was excrutiating and I couldn't bend my wrist. I later learnt from a sympathetic nurse that green canulars are the largest and used when a large amount of drugs needs pumping in quickly. Why he thought I needed one I don't know?! Thankfully the nurse called another doctor to remove and replace it with a smaller one. Unfortunately he missed the vein and the drugs began tissuing (pumping into tissue rather than vein). As you can imagine by now my hand was black and blue!
Once sorted with canular I was sent to xray where the radiographer questioned me having another ct scan explaining that having only one kidney left it has to work harder to filter the dye around. I was brimming with confidence by this time...
My husband arrived later that evening and sat with me for a further 5 hours till I was admitted - I'd been on a trolley for 8 and a half hours. I hadn't anticipated my next stop, the wards were overflowing and I was sent to the High Dependancy Unit as the ct scanner wasn't available. I now have to spend a night on my own in a high dependancy bed surrounded by huge equipment and shuttered windows that staff peep though regularly. Weird.
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