Less than 3 weeks before I collapsed and was diagnosed with kidney cancer, this feature in the local paper Tamworth Herald was published.
Looking back at the photographs now it's strange to think I had a tumor growing inside my kidney. Only 2 months prior to that I had exhibited my designs at Clothes Show Live in Birmingham, again with no idea I was unwell let alone had cancer.
A further 6 years before this my mother was diagnosed with breast cancer and I had supported her through the treatments and thankfully on to a full recovery. I had not once stopped to think I was at risk from cancer myself, it never crossed my mind to have any check ups, I didn't even know my doctors name.
However, 1 week before my collapse I found a lump in my armpit, just a small swelling but it made me stop and think and I booked to see a nurse for a check up. At the health centre a nurse examined me and immediately referred me through to a doctor, not what I was expecting. The doctor examined me but by then the lump was not very big, the swelling had gone down. He said it was probably glands and most likely a symptom of something else, little did we know.
Since diagnosis and surgery I have of course had various check ups and examinations and questions about my medical history have been asked. My Dad suffered with kidney problems and sadly died young at 41 from a heart attack. No link to his kidney problems were made though and neither was my Mom's breast cancer connected. No reason for my cancer was given, in fact when I asked how long it had been there the consultant answered, 'how far can a horse run'? If you think that's a vague answer try this, when I asked why I may have kidney cancer specifically the consultant said, 'ask yourself why children have cancer, what have they done'?
I think the point being made was that there is no hard and fast answer only statistics. Cancer itself is a lottery (another quote from my consultant) it can strike at random and unfortunately this time it was me. The statistics show that kidney cancer is the 8th most common of the diseases and then it affects significantly more men than women. High on the list of risks are drinking, smoking, obesity and high blood pressure - none of which really concerned me (ok so my drink index was occasionally too high...)
So there it was, I had a relatively uncommon cancer and didn't match the statistics. I was running an alternative fashion company that didn't follow the trends. My business was growing, so was the cancer and both were about to stop abruptly.
I still ask myself why, how it came to be there, how long for, was I ill and didn't notice, did it hurt and I carried on and to myself - will it ever come back.
Another quote from my consultant, 'you can either worry about it night and day wondering if there's still some there or you can carry on as normal and hope it's all gone'.
The last but one sentence in my local paper business feature should help me decide;
'I make clothes that are neither in nor out of fashion but take their inspiration from music and we intend to be around for a long while yet'.
Reckon I will.
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.
Saturday, 17 August 2013
Friday, 16 August 2013
Day 15 Goodbye Kidney & Cancer its Surgery Time
It was a fretful sleep, worrying about missing the alarm as well as the obvious, my first operation.
It was snowing so we left earlier than planned and made our way to admissions lounge where we sat amongst other patients booked for surgery in a quiet, sparse waiting room. I was called to a smaller room, my husband came with me and I was asked a series of questions by a nurse including, 'which kidney is being removed' - I had hoped they knew this. I had some routine checks, blood pressure, heart rate and then an anesthetist came in and asked more questions, cant remember what now. I was sent back to the main waiting room and another doctor came to see me and from there I was sent back to another small room (again my husband was allowed to come too) where I was given a gown and surgical stockings to put on.
It was then the surgeon came in, the first time my husband had met him or for that matter any of the team of doctors that had looked after me. As I have written previously, this wasn't like a TV drama where your family are taken to one side by a doctor or nurse and have news broken to them or even updates on your condition. At this point my husband had had to rely on me relaying information to him.
The surgeon went through more Q&As and then drew on my side and back the points where he would be making incisions. He was very kind and answered our questions and then said he'd see me in theatre.
It all seemed to quick at that point and I think finally hit home.
We were sent to sit out in a corridor where a theatre nurse in scrubs came over and said it was time to take me down. That moment was awful, having to walk away from my husband sat in the corridor I felt so scared. I was dressed in one of those gowns that you have to hold together, my pants and a pair of adidas trainers.
Incidentally, in the past week I'd asked a friend to cut my hair as I was unable to wash or look after it while in hospital so I decided to cut it all off. It was the shortest of pixie cuts but in my gown and trainers I looked particularly waif like.
Our first stop was another small room where I answered more questions again including, 'which kidney is being removed', should I worry...? From there I went through to the room outside the theatre where another nurse asked me questions with, yes you guessed it, 'which kidney is being removed'. Apparently its just procedure.
The strangest thing for me was walking into the operating theatre, I had envisaged being wheeled in on a bed but going in on foot was bizarre. There were several people all in scrubs and I was invited to climb up onto the bed and leave my trainers underneath, it felt so weird. Then an anesthetist came to check my veins but took some time to admire my sleeve tattoo which he decided was too nice to puncture. Then the team proceeded to hook me up and before I knew it I was gone. No countdowns, no dreams nothing to report.
My next memory is looking up to see my husband in a recovery ward. It was all over.
Five and a half hours had passed, my kidney along with the cancer had been successfully removed.
It was snowing so we left earlier than planned and made our way to admissions lounge where we sat amongst other patients booked for surgery in a quiet, sparse waiting room. I was called to a smaller room, my husband came with me and I was asked a series of questions by a nurse including, 'which kidney is being removed' - I had hoped they knew this. I had some routine checks, blood pressure, heart rate and then an anesthetist came in and asked more questions, cant remember what now. I was sent back to the main waiting room and another doctor came to see me and from there I was sent back to another small room (again my husband was allowed to come too) where I was given a gown and surgical stockings to put on.
It was then the surgeon came in, the first time my husband had met him or for that matter any of the team of doctors that had looked after me. As I have written previously, this wasn't like a TV drama where your family are taken to one side by a doctor or nurse and have news broken to them or even updates on your condition. At this point my husband had had to rely on me relaying information to him.
The surgeon went through more Q&As and then drew on my side and back the points where he would be making incisions. He was very kind and answered our questions and then said he'd see me in theatre.
It all seemed to quick at that point and I think finally hit home.
We were sent to sit out in a corridor where a theatre nurse in scrubs came over and said it was time to take me down. That moment was awful, having to walk away from my husband sat in the corridor I felt so scared. I was dressed in one of those gowns that you have to hold together, my pants and a pair of adidas trainers.
Incidentally, in the past week I'd asked a friend to cut my hair as I was unable to wash or look after it while in hospital so I decided to cut it all off. It was the shortest of pixie cuts but in my gown and trainers I looked particularly waif like.
Our first stop was another small room where I answered more questions again including, 'which kidney is being removed', should I worry...? From there I went through to the room outside the theatre where another nurse asked me questions with, yes you guessed it, 'which kidney is being removed'. Apparently its just procedure.
The strangest thing for me was walking into the operating theatre, I had envisaged being wheeled in on a bed but going in on foot was bizarre. There were several people all in scrubs and I was invited to climb up onto the bed and leave my trainers underneath, it felt so weird. Then an anesthetist came to check my veins but took some time to admire my sleeve tattoo which he decided was too nice to puncture. Then the team proceeded to hook me up and before I knew it I was gone. No countdowns, no dreams nothing to report.
My next memory is looking up to see my husband in a recovery ward. It was all over.
Five and a half hours had passed, my kidney along with the cancer had been successfully removed.
Thursday, 15 August 2013
Days 7-14 In Limbo
Going home was very emotional as I'd left 6 days earlier not knowing I had cancer and never expecting a stay in hospital. Seeing family, friends and my two dogs was wonderful but at the same time very sad as I was having to break the news to them of what was happening. Even the dogs seemed to know that things had changed and life wasn't the same right now, our routine had abruptly stopped.
I chose not to tell many people and news of my condition was on a 'need to know' basis, I just didn't want to have calls or questions. In hindsight I'm not sure this made it easier or harder for my immediate family as I was restricting them from sharing what was happening to me but of course, was also affecting them.
The business I was running became irrelevant and I closed it. Having used social media daily I ceased all posts and literally shut down everything. At this point I had no idea where things would go. I was to have major surgery in 8 days, that was it, out of my control. What would happen next was the unknown and so I had deal with the here and now and the business felt very much in the past. Also, I didn't want to speak to anyone outside of immediate family and friends so there was no way I would be tweeting my experience at that time.
I suppose looking back it was a kind of limbo, the days waiting for surgery were the only time I actually had cancer, prior to that it hadn't existed to me. Now I was having to wait for it to be taken out, along with a kidney that I suddenly felt rather attached to. The wait wasn't made easier by the pain I was in.
During the 8 days I was home I continued with my diary which had been started in order to remember detail of what was happening to me and I'd continued to help me make sense of it. Things I recorded included sleep patterns, painkiller amounts, snow falling, my daughters 21st, what I ate, visitors and tears. I also made accounts of having to tell family and friends the truth about my hospital stay and the other visit that was looming. Until then no-one knew that I had cancer and telling others made it more real.
My dreams at this time were surreal and may have been made more colourful by the cocktail of drugs I was taking. A lot of what I wrote at this time concerned family and how I felt, these words will remain private and reading back over them almost transports me back to that time, so difficult for all of us.
A couple of days before the surgery my husband took me for my pre-op at Good Hope. This was my first trip outside since leaving hospital and it was lovely to be out in the car. The pre op involved answering a list of questions about my general health and personal info, addresses etc. I had blood tests, an ECG and was weighed and measured - apparently I had the pulse of an 18 year old!
The night before I was feeling a bit sick and unwell but this was probably nerves, I've written in my diary 'I really enjoyed my last supper' Haha I'm not sure I was full of confidence at this point!
To use a cliche the last week had been a rollercoaster of emotions, not only mine. My family had loved and cared for me whilst dealing with the worry and uncertainty of my condition. I'd seen friends break down on hearing my news, I'd even had one offering me her kidney! I'd closed my business and dropped out of my routine quite comfortably, nothing else seemed important at the time.
One more sleep and I'd say hello to Heartlands again and goodbye to cancer (and a kidney). The wait was over.
I chose not to tell many people and news of my condition was on a 'need to know' basis, I just didn't want to have calls or questions. In hindsight I'm not sure this made it easier or harder for my immediate family as I was restricting them from sharing what was happening to me but of course, was also affecting them.
The business I was running became irrelevant and I closed it. Having used social media daily I ceased all posts and literally shut down everything. At this point I had no idea where things would go. I was to have major surgery in 8 days, that was it, out of my control. What would happen next was the unknown and so I had deal with the here and now and the business felt very much in the past. Also, I didn't want to speak to anyone outside of immediate family and friends so there was no way I would be tweeting my experience at that time.
I suppose looking back it was a kind of limbo, the days waiting for surgery were the only time I actually had cancer, prior to that it hadn't existed to me. Now I was having to wait for it to be taken out, along with a kidney that I suddenly felt rather attached to. The wait wasn't made easier by the pain I was in.
During the 8 days I was home I continued with my diary which had been started in order to remember detail of what was happening to me and I'd continued to help me make sense of it. Things I recorded included sleep patterns, painkiller amounts, snow falling, my daughters 21st, what I ate, visitors and tears. I also made accounts of having to tell family and friends the truth about my hospital stay and the other visit that was looming. Until then no-one knew that I had cancer and telling others made it more real.
My dreams at this time were surreal and may have been made more colourful by the cocktail of drugs I was taking. A lot of what I wrote at this time concerned family and how I felt, these words will remain private and reading back over them almost transports me back to that time, so difficult for all of us.
A couple of days before the surgery my husband took me for my pre-op at Good Hope. This was my first trip outside since leaving hospital and it was lovely to be out in the car. The pre op involved answering a list of questions about my general health and personal info, addresses etc. I had blood tests, an ECG and was weighed and measured - apparently I had the pulse of an 18 year old!
The night before I was feeling a bit sick and unwell but this was probably nerves, I've written in my diary 'I really enjoyed my last supper' Haha I'm not sure I was full of confidence at this point!
To use a cliche the last week had been a rollercoaster of emotions, not only mine. My family had loved and cared for me whilst dealing with the worry and uncertainty of my condition. I'd seen friends break down on hearing my news, I'd even had one offering me her kidney! I'd closed my business and dropped out of my routine quite comfortably, nothing else seemed important at the time.
One more sleep and I'd say hello to Heartlands again and goodbye to cancer (and a kidney). The wait was over.
Friday, 9 August 2013
Day 6 Rude Awakening 3 The Eviction!
Following my Q&A session that morning I was told that pending blood test results taken earlier I may be able to go home later that day. This was my 6th day in hospital and I was feeling really rough and very tired and fed up so the thought of home was wonderful, even though I knew I'd be back soon.
After lunch I fell asleep. I was in an all female bay of 6 which was on a mixed renal ward. At that point I had a cannula in my hand for morphine pain relief but the catheter had been removed.
What happened next still shocks me and those whom I relay this to.
I was woken from what must have been a really deep sleep by a sharp pain in my hand and could hear someone saying my name. As I came round there was a Health Care Assistant by the bed removing things from the side cabinet. Standing over me was a nurse who was removing the cannula (hence the pain). As I started to wake I asked what they were doing and was told I was being moved to the discharge lounge to go home. By now they had my legs out the bed and all my cupboards were emptied onto the bed. The HCA was trying to put my trousers on and I'd started to cry - the first time since I'd been there. I told them I'd not had my blood test results or phoned my husband but they dismissed this and continued stuffing my belongings into carrier bags.
Then a smart man in a suit arrived by the bed and introduced himself as the surgeon who would be removing my kidney. The nurse and HCA stopped what they were doing, obviously not expecting him to be there. I was perched on the edge of the bed, trousers round my ankles and belongings stuffed in bags around me. Awkward silence... The surgeon then asked if I was ok, was on on morphine (I was crying so probably looked a mess). I managed to get myself together and said I'd been woken by the cannula being removed and told I had to leave. The surgeon then addressed the nurse and HCA and said I'd not be going anywhere at which they scurried away. The whole bay was silent and watching.
The surgeon then proceeded to introduce himself properly and explained he'd been on holiday and as he now had a list to follow my operation wouldn't take place for 10 days. He said normally after an embolisation they would remove the organ as soon as possible but unfortunately this hadn't been possible. He said that due to the embolisation the kidney would be swollen and may stick (not sure what to) and so surgery could take longer and dependant upon what they found may be open surgery although keyhole was planned.
All of this information was being given following the rudest awakening from staff at the hospital and so I was understandably distressed. As the surgeon left he went to speak to the sister, presumably about my treatment as he was not happy.
I took myself off to the toilets and for the first time since arriving at the hospital sobbed and sobbed. Looking back I think that the seriousness of my condition had just hit me full on but it was obviously not helped by the rude and thoughtless nature by which I was being evicted from my hospital bed.
When I returned to the ward the other patients were also visibly upset and I sat with a lady who comforted me as others expressed their disgust at what had happened. The mother of a young girl in the bed opposite said she'd only ever seen this sort of thing on hidden camera footage on the TV, it really was awful.
Then the nurse who had woken me returned with the HCA who was also very upset and the ward manager had been called. They asked me to go back to my bed and speak to them which I did but refused to have the curtains drawn around. The nurse said, 'I dont think you understood us we weren't making you leave'. That was it, the lady next to me said 'Yes you were we all saw it' and the mother opposite joined in. The staff were obviously worried I'd complain and were desperately trying to cover their tracks.
I assured them I was fully aware of what had happened but that I had no intention of complaining. What's the point it wasn't going to change my situation. I could see the HCA was genuinely upset and knew she was only following orders as was the nurse. I understand the pressures placed upon them and the need for beds, what they did to me wasn't personal it was just badly handled. I'd get over it.
Following this I was visited by two other senior nurses, one a sister who both asked if I was ok and if I had any complaints. The truth was that if the surgeon hadn't arrived I would have been sitting in discharge lounge waiting for my husband to collect me.
My blood test results came back ok and later that evening I was discharged and my husband collected me from the ward. Leaving the others in the bay was really emotional, strange the bonds you form in such a short time but I knew I'd be back but next time for surgery.
After lunch I fell asleep. I was in an all female bay of 6 which was on a mixed renal ward. At that point I had a cannula in my hand for morphine pain relief but the catheter had been removed.
What happened next still shocks me and those whom I relay this to.
I was woken from what must have been a really deep sleep by a sharp pain in my hand and could hear someone saying my name. As I came round there was a Health Care Assistant by the bed removing things from the side cabinet. Standing over me was a nurse who was removing the cannula (hence the pain). As I started to wake I asked what they were doing and was told I was being moved to the discharge lounge to go home. By now they had my legs out the bed and all my cupboards were emptied onto the bed. The HCA was trying to put my trousers on and I'd started to cry - the first time since I'd been there. I told them I'd not had my blood test results or phoned my husband but they dismissed this and continued stuffing my belongings into carrier bags.
Then a smart man in a suit arrived by the bed and introduced himself as the surgeon who would be removing my kidney. The nurse and HCA stopped what they were doing, obviously not expecting him to be there. I was perched on the edge of the bed, trousers round my ankles and belongings stuffed in bags around me. Awkward silence... The surgeon then asked if I was ok, was on on morphine (I was crying so probably looked a mess). I managed to get myself together and said I'd been woken by the cannula being removed and told I had to leave. The surgeon then addressed the nurse and HCA and said I'd not be going anywhere at which they scurried away. The whole bay was silent and watching.
The surgeon then proceeded to introduce himself properly and explained he'd been on holiday and as he now had a list to follow my operation wouldn't take place for 10 days. He said normally after an embolisation they would remove the organ as soon as possible but unfortunately this hadn't been possible. He said that due to the embolisation the kidney would be swollen and may stick (not sure what to) and so surgery could take longer and dependant upon what they found may be open surgery although keyhole was planned.
All of this information was being given following the rudest awakening from staff at the hospital and so I was understandably distressed. As the surgeon left he went to speak to the sister, presumably about my treatment as he was not happy.
I took myself off to the toilets and for the first time since arriving at the hospital sobbed and sobbed. Looking back I think that the seriousness of my condition had just hit me full on but it was obviously not helped by the rude and thoughtless nature by which I was being evicted from my hospital bed.
When I returned to the ward the other patients were also visibly upset and I sat with a lady who comforted me as others expressed their disgust at what had happened. The mother of a young girl in the bed opposite said she'd only ever seen this sort of thing on hidden camera footage on the TV, it really was awful.
Then the nurse who had woken me returned with the HCA who was also very upset and the ward manager had been called. They asked me to go back to my bed and speak to them which I did but refused to have the curtains drawn around. The nurse said, 'I dont think you understood us we weren't making you leave'. That was it, the lady next to me said 'Yes you were we all saw it' and the mother opposite joined in. The staff were obviously worried I'd complain and were desperately trying to cover their tracks.
I assured them I was fully aware of what had happened but that I had no intention of complaining. What's the point it wasn't going to change my situation. I could see the HCA was genuinely upset and knew she was only following orders as was the nurse. I understand the pressures placed upon them and the need for beds, what they did to me wasn't personal it was just badly handled. I'd get over it.
Following this I was visited by two other senior nurses, one a sister who both asked if I was ok and if I had any complaints. The truth was that if the surgeon hadn't arrived I would have been sitting in discharge lounge waiting for my husband to collect me.
My blood test results came back ok and later that evening I was discharged and my husband collected me from the ward. Leaving the others in the bay was really emotional, strange the bonds you form in such a short time but I knew I'd be back but next time for surgery.
Thursday, 8 August 2013
Dressing up and feeling down
Before I continue with what happened next I thought I'd skip forward again to the here and now and how the day to day is feeling, minus one kidney with a tumor.
On the whole I can honesty say that in just over 4 months it's not immediately obvious and my cancer journey could be 4 years ago as life pretty much goes on as normal. Those people that don't know what I've recently gone through wouldn't need to be told as it has no bearing on what I can do physically. That said, I am still slightly slower and a little more awkward when walking but that's due to subsequent back pain (I'll get to that).
The thing that has bothered me personally more is the adjustments to my wardrobe and appearance that I've had to make. I had expected there to be discomfort on and around where the scarring is but hadn't realised it would carry on for so long. Being a scar of course there is the obvious appearance of said 'stitch up' that is not something I really want to show and tell...!
It was my left kidney and it's 7cm tumor that was removed and fortunately this was by key hole surgery. Unfortunately the kidney and it's tumor were somewhat swollen so the 'keyhole' is rather more 'manhole' in size, approx 8cm. I also have 3 other little incisions that surprisingly seem more irritating but this may be because they are positioned nearer where my waistbands are.
These additions to my body art are the reason my clothes are either uncomfortable to wear or just not sitting right as I also seem to have changed shape! I think that is possibly due to me not being able to exercise and so being naturally slim I have acquired a belly for the first time since having children and so I'm not feeling at my most attractive right now.
Basically I can't wear anything that has a waistband right now unless its loose or elasticated so jeans are difficult unless I leave them undone (which I do regularly). I wont wear anything tight fitting that may highlight my shape or clothes that don't quite reach my waistline so half my wardrobe is currently useless.
The things that don't aggravate my scarring are generally clothes that I wouldn't normally wear and so I feel awkward in them.
I suppose I should be grateful that the reason for my clothing calamity has been removed and caring about what I'm wearing should be the least of my worries. It's just that it's a daily reminder for me of what has recently happened (that and catching myself in the mirror). To everyone else I'm looking fine apart from a slightly strange walk but that's not attracting too much attention.
I should also be grateful for the fact that my job as a dressmaker enables me to make clothes so what am I waiting for...time to design a whole new look!
On the whole I can honesty say that in just over 4 months it's not immediately obvious and my cancer journey could be 4 years ago as life pretty much goes on as normal. Those people that don't know what I've recently gone through wouldn't need to be told as it has no bearing on what I can do physically. That said, I am still slightly slower and a little more awkward when walking but that's due to subsequent back pain (I'll get to that).
The thing that has bothered me personally more is the adjustments to my wardrobe and appearance that I've had to make. I had expected there to be discomfort on and around where the scarring is but hadn't realised it would carry on for so long. Being a scar of course there is the obvious appearance of said 'stitch up' that is not something I really want to show and tell...!
It was my left kidney and it's 7cm tumor that was removed and fortunately this was by key hole surgery. Unfortunately the kidney and it's tumor were somewhat swollen so the 'keyhole' is rather more 'manhole' in size, approx 8cm. I also have 3 other little incisions that surprisingly seem more irritating but this may be because they are positioned nearer where my waistbands are.
These additions to my body art are the reason my clothes are either uncomfortable to wear or just not sitting right as I also seem to have changed shape! I think that is possibly due to me not being able to exercise and so being naturally slim I have acquired a belly for the first time since having children and so I'm not feeling at my most attractive right now.
Basically I can't wear anything that has a waistband right now unless its loose or elasticated so jeans are difficult unless I leave them undone (which I do regularly). I wont wear anything tight fitting that may highlight my shape or clothes that don't quite reach my waistline so half my wardrobe is currently useless.
The things that don't aggravate my scarring are generally clothes that I wouldn't normally wear and so I feel awkward in them.
I suppose I should be grateful that the reason for my clothing calamity has been removed and caring about what I'm wearing should be the least of my worries. It's just that it's a daily reminder for me of what has recently happened (that and catching myself in the mirror). To everyone else I'm looking fine apart from a slightly strange walk but that's not attracting too much attention.
I should also be grateful for the fact that my job as a dressmaker enables me to make clothes so what am I waiting for...time to design a whole new look!
Wednesday, 31 July 2013
Day 6 Questions Answered - It's Kidney Cancer
At this point I had seen several doctors and a consultant along with different registrars on ward rounds but still hadn't received any definite diagnosis. Neither had my husband been present at any of the various explanations of why I was in hospital or what had led to my admission. This was apart from day 2 when a registrar on a ward round told me the lump bleeding inside my kidney was cancer - news given on my own with no further explanation. Since then I'd also been told I'd lose part of my kidney, the whole kidney, possibly if they stopped the bleeding no surgery and that the 'lump' wasn't yet identified.
For this reason together with my husband I had written down questions that we needed the answers to. As it was impossible to time visiting hours with doctors ward rounds the answers to these questions would inevitably be given to me alone, but we needed answers.
The doctor on that mornings ward round was not anticipating being given 12 questions to answer when he came round to see me, neither was he expecting to have to wait while I wrote down the answers. However, I needed those answers and thankfully he cut to the chase and I felt I finally knew what I was dealing with.
So here are the answers but I've also included what actually transpired as things don't always go according to plan;
1.
Q.When will I have the operation?
A. 3-4 weeks
The surgery actually took place 9 days later. I was told it would have been immediately after embolisation as a rule but the surgeon was away and on return he already had a list to follow.
2.
Q. What are you removing and what is the cause and how do you know?
A. Cancer. We know a dirty big tumor when we see one.
Told you he cut to the chase. No cause given.
3.
Q. What will be the procedure?
A. Keyhole or open, the surgery will depend upon the size of the kidney as it will have swollen due to the cancer bleeding and subsequent embolisation. This can also cause the tumor to stick and therefore be more difficult to remove hence usually removing sooner rather than later.
4.
Q. How long does the operation take?
A. 2-3 hours
It was actually 5 and a half hours.
5.
Q. Has the CT scan shown full extent of the growth or will the operation be exploratory?
A. Yes.
That's all I'd written so I'm guessing it was exploratory...
6.
Q. Will there be a biopsy to determine the grade of the growth?
A. We know what it is.
I didn't get more than this and as you will find out, it was over a month post surgery until I did.
7.
Q. Is there a possibility of reocurrence?
A. Always is.
Another succinct answer.
8.
Q. What is expected duration of hospital stay post surgery?
A. 2 days
It was actually 5 days.
9.
Q. Explain post op procedure and limitations?
A. 6 weeks no chemotherapy or radiotherapy if confined to the kidney.
That's all I wrote.
10.
Q. Referral or revue venue post op?
No answer.
11.
Q. Operation venue?
A. Heartlands, Birmingham.
12.
Q. Will my husband get a chance to speak to the doctor/consultant?
If he's here early morning or late evening.
Shame that didn't fit with visiting times...
Well that's it. All I needed to know about kidney cancer given in a ward round visit on day 6 of my hospital admission, alone.
I was grateful to know what I was facing and felt more prepared now.
For this reason together with my husband I had written down questions that we needed the answers to. As it was impossible to time visiting hours with doctors ward rounds the answers to these questions would inevitably be given to me alone, but we needed answers.
The doctor on that mornings ward round was not anticipating being given 12 questions to answer when he came round to see me, neither was he expecting to have to wait while I wrote down the answers. However, I needed those answers and thankfully he cut to the chase and I felt I finally knew what I was dealing with.
So here are the answers but I've also included what actually transpired as things don't always go according to plan;
1.
Q.When will I have the operation?
A. 3-4 weeks
The surgery actually took place 9 days later. I was told it would have been immediately after embolisation as a rule but the surgeon was away and on return he already had a list to follow.
2.
Q. What are you removing and what is the cause and how do you know?
A. Cancer. We know a dirty big tumor when we see one.
Told you he cut to the chase. No cause given.
3.
Q. What will be the procedure?
A. Keyhole or open, the surgery will depend upon the size of the kidney as it will have swollen due to the cancer bleeding and subsequent embolisation. This can also cause the tumor to stick and therefore be more difficult to remove hence usually removing sooner rather than later.
4.
Q. How long does the operation take?
A. 2-3 hours
It was actually 5 and a half hours.
5.
Q. Has the CT scan shown full extent of the growth or will the operation be exploratory?
A. Yes.
That's all I'd written so I'm guessing it was exploratory...
6.
Q. Will there be a biopsy to determine the grade of the growth?
A. We know what it is.
I didn't get more than this and as you will find out, it was over a month post surgery until I did.
7.
Q. Is there a possibility of reocurrence?
A. Always is.
Another succinct answer.
8.
Q. What is expected duration of hospital stay post surgery?
A. 2 days
It was actually 5 days.
9.
Q. Explain post op procedure and limitations?
A. 6 weeks no chemotherapy or radiotherapy if confined to the kidney.
That's all I wrote.
10.
Q. Referral or revue venue post op?
No answer.
11.
Q. Operation venue?
A. Heartlands, Birmingham.
12.
Q. Will my husband get a chance to speak to the doctor/consultant?
If he's here early morning or late evening.
Shame that didn't fit with visiting times...
Well that's it. All I needed to know about kidney cancer given in a ward round visit on day 6 of my hospital admission, alone.
I was grateful to know what I was facing and felt more prepared now.
Friday, 26 July 2013
Day 5 High's & Lows
Yesterday's embolisation appeared to have worked and the bleeding from the tumor had stopped. The procedure had knocked me about a bit so I'd slept on and off yesterday but at 2am on St Patricks Day I was wide awake.
Usually this would be a day of celebrating which of course involved plenty of alcohol and dancing. Here I was lying in a hospital bed in a considerable amount of pain. There was a lady next to me vomiting continually and another young girl crying on and off. Things always seem worse in the middle of the night but this was a new low. Things were about to get worse though as when the nurse came to check my wee it appeared that I'd started bleeding again, the embolisation may not have worked.
I was dosed up on morphine and monitored closely throughout the night, I have to admit at that point I was very frightened. Eventually as the morning arrived the bleeding subsided again and the pain relief started to kick in - as did the texts of Happy St Patricks Day and bet you're off to the Parade - if only they knew! I had chosen to tell no one about my hospital admission, only close family were aware at this time.
One of the nurses on duty this day was Audrey and she was an angel. Having seen what I'd been through during the night she made sure my husband was contacted and could come in to spend the day with me. It was a first as far as St Patrick's Day's go, hot chocolate in a wheelchair was not what I'd planned but it was a real treat and a chance to have some time outside the ward to try and make sense of what was happening.
It also gave us time to write down some questions for the doctors as I had not been formally told what exactly the diagnosis was and my husband had not seen any doctors at this stage. This is something we both felt was wrong, after watching TV dramas like Monroe or Holby City you presume that with something as serious as cancer the news would be broken to you with a member of your family or someone close, at the very least a nurse. My news came via a ward round doctor in a vague manner just after I'd woken up - not how I expected to find out. Also, there was no way to ensure my husband could be present when a doctor came to see me as the ward rounds varied and visiting times are strict so all diagnosis so far had been given to me alone. By writing down questions between us we would at least be able to hopefully get some straight answers.
Usually this would be a day of celebrating which of course involved plenty of alcohol and dancing. Here I was lying in a hospital bed in a considerable amount of pain. There was a lady next to me vomiting continually and another young girl crying on and off. Things always seem worse in the middle of the night but this was a new low. Things were about to get worse though as when the nurse came to check my wee it appeared that I'd started bleeding again, the embolisation may not have worked.
I was dosed up on morphine and monitored closely throughout the night, I have to admit at that point I was very frightened. Eventually as the morning arrived the bleeding subsided again and the pain relief started to kick in - as did the texts of Happy St Patricks Day and bet you're off to the Parade - if only they knew! I had chosen to tell no one about my hospital admission, only close family were aware at this time.
One of the nurses on duty this day was Audrey and she was an angel. Having seen what I'd been through during the night she made sure my husband was contacted and could come in to spend the day with me. It was a first as far as St Patrick's Day's go, hot chocolate in a wheelchair was not what I'd planned but it was a real treat and a chance to have some time outside the ward to try and make sense of what was happening.
It also gave us time to write down some questions for the doctors as I had not been formally told what exactly the diagnosis was and my husband had not seen any doctors at this stage. This is something we both felt was wrong, after watching TV dramas like Monroe or Holby City you presume that with something as serious as cancer the news would be broken to you with a member of your family or someone close, at the very least a nurse. My news came via a ward round doctor in a vague manner just after I'd woken up - not how I expected to find out. Also, there was no way to ensure my husband could be present when a doctor came to see me as the ward rounds varied and visiting times are strict so all diagnosis so far had been given to me alone. By writing down questions between us we would at least be able to hopefully get some straight answers.
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