By now it was July and I should have been looking forward to our annual trip to Zante. Its the only break we really get and I was gutted that we had to cancel.
It was bad enough being off work - I'm one of those people that are no good at having my work done by anyone else. Its supposed to be a bad trait to have, but thats just the way I am. I do things my way, and I want it to be done my way - and by ME!! My friend Vicky fell into my seat to take on the work I wasn't there to do, but I hated every minute of it. I always called it my baby - and boy was I having withdrawal symptons. But there was nothing I could do about it so I just had to get on with it. I was hoping that I could maybe get back soon but I think I was getting a bit premature.
Anyway, I was lying on the sofa one day, and got up quickly to answer the door - when I sat back down, something just went and the pain that went down the back of my legs was undescribable. The only way I could bear it was if I lay flat, any attempt to sit up or get up was just agonizing. I was screaming and crying and terrifed what was happening to me. Mick called the Dr and a locum came out. Told me to double up on my pain medication and more or less left me to it. He did call for the ambulance service to come and get me up the stairs to bed - and the district nurse came and brought me a bedpan, which I couldn't even get onto without a great deal of help.
I spent the evening just crying in pain until the ambulance came about 1 in the morning and got me in a chair, I don't know how, and got me up the stairs and into bed. Once I was laid flat I felt a lot better but I still couldn't use the bed pan. It wasn't a good position to be in.
The next morning my GP came out and when she saw the condition I was in, she called an ambulance to get me into the local hospital. I thought there I would get sorted out, but for some reason, the only bed available was on the heart ward, probably the only part of me that actually was working fine!
I wish I could say that this was a good move, but if I had any idea of what hell is like, then I don't think I was far from it. I was xrayed and scanned as they were afraid that I might have had a spinal cord compression - apparantly this is a medical emergency and extremely serious. It wasn't that.
Other than that, the only treatment I got was continued pain killers. I still could only use the bed pan with a lot of help, this in itself was soul destroying. Not a lot of dignity left when you can't even see to your own bodily functions.
The nursing staff were busy, but even when they were seeing to you, they didn't seem to be able to give you any personal attention. They did what they had to and no more. Tended to talk about you or at you, but never to you. And when you spend the night listening to some poor soul crying out for a bed pan, only to be told they too busy to see to her with the result of her doing her business where she lay, you just get more and more depressed. One old lady looked like she was on her last legs and I had to ask the nurses to have a look at her - she ended up spending the night with her family round the bed as she was obviously nearing the end. She rallied though - don't know how - it certainly wasn't with the attention she got.
This and the constant pain I was in, made me very depressed. I was in tears all the time, which so isn't me. The Reverand sat and talked to me, even though I told her I wasn't really a follower, but she didn't seem to mind my non believer status and came to visit me every day and just talked about every day things. My family came every day, but they were upset to see me in the state I was in.
It came to a head when the nurses insisted that I get out of bed to use the commode instead of the bed pan. Now bearing in mind that as soon as I made any attempt to get into a sitting position, the most excrutiating pain shot down the back of both legs, then it didn't bode well for a very productive time on a commode. But there they left me, and left me, and left me............. I was crying and screaming for someone to help me as the pain got worse and worse and I couldn't move off the commode. Eventually a nurse and a physio came in and got me back into bed. I was distraught.
Thank heavens for the Macmillan Nurse! She visited and within a few hours she had got me a bed in the local hospice. I had no thoughts of what that could mean, other than it was a bed away from this house of horrors!
Tuesday 2 October 2012
Radiotherapy
Well, I was back home - complete with a collection of metal pins in my spine to stablise it - apparantly it could have gone at any time. Maybe my GP should have listened to me when I asked for an xray all those times I was in agony - but, who am I to question the medical profession?
At that point I could hardly get around at all, I felt very down but it was quite a surreal time. If it hadnt been for my niece Julie dropping in every day with a sandwich and to make me cups of tea, I don't know what I would have done. She was a godsend, she was determined that I wouldn't fall into depression and gave me loads of pointers to try to keep my spirits up.
But at that time it was hard for us all - we hadnt been given any kind of prognosis, other than I wouldn't be able to go to Zante in August as I would be too ill. So that got me thinking that maybe I wouldn't see Xmas. We didn't discuss that though - it was only very much later that we all admitted to having the same thoughts.
Medically the plan was to start off with Tamoxifen immediately - start the fight from within. Then the start of many trips to the hospital - Christies at Manchester to start with. Radiotherapy on my left hip, then my upper and lower spine, the idea being to try and get me more mobile. At this time I was still on crutches and not able to drive until I got the all clear from\ my back consultant. Julie was called into action again - she made sure I got to every session on time and kept me company while I waited to be seen. I have to say that the staff at Christies were superb - nothing was too much trouble and there is such a sense of calm around in a place that is busier than you could imagine. Who would have thought that a hospital built just for cancer patients would be so well populated. Its frightening how many people are affected by this horrible condition.
For anyone starting radiotherapy, all I can say is that its fine. No need to be scared or anything, its a lot of lying around still while they get you marked up and into the right position, then the zapping itself is over in minutes. After effects for me were a general lack of appetite and a great deal of exhaustion. But then again I was still recovering from a major back operation so that could have added to my general tiredness.
I didn't really move far from my bed, partly because my leg and back were still giving me jip and partly because I just didn't have any energy. So it was meals in bed and lots of Jeremy Kyle. You don't realise how many episodes you're able to watch in one day - far too many for your general disposition!!
My ex Mick stayed around to support Dan and to help out as I couldn't do anything practical in the house. He shopped, cooked and cleaned and made sure I was fed and watered.
By July I had started to pick up a bit. I was getting around a lot more on my crutches and after getting the all clear from my back consultant, I was even driving a bit. Things were starting to look a bit better. Then of course, disaster struck once more............
At that point I could hardly get around at all, I felt very down but it was quite a surreal time. If it hadnt been for my niece Julie dropping in every day with a sandwich and to make me cups of tea, I don't know what I would have done. She was a godsend, she was determined that I wouldn't fall into depression and gave me loads of pointers to try to keep my spirits up.
But at that time it was hard for us all - we hadnt been given any kind of prognosis, other than I wouldn't be able to go to Zante in August as I would be too ill. So that got me thinking that maybe I wouldn't see Xmas. We didn't discuss that though - it was only very much later that we all admitted to having the same thoughts.
Medically the plan was to start off with Tamoxifen immediately - start the fight from within. Then the start of many trips to the hospital - Christies at Manchester to start with. Radiotherapy on my left hip, then my upper and lower spine, the idea being to try and get me more mobile. At this time I was still on crutches and not able to drive until I got the all clear from\ my back consultant. Julie was called into action again - she made sure I got to every session on time and kept me company while I waited to be seen. I have to say that the staff at Christies were superb - nothing was too much trouble and there is such a sense of calm around in a place that is busier than you could imagine. Who would have thought that a hospital built just for cancer patients would be so well populated. Its frightening how many people are affected by this horrible condition.
For anyone starting radiotherapy, all I can say is that its fine. No need to be scared or anything, its a lot of lying around still while they get you marked up and into the right position, then the zapping itself is over in minutes. After effects for me were a general lack of appetite and a great deal of exhaustion. But then again I was still recovering from a major back operation so that could have added to my general tiredness.
I didn't really move far from my bed, partly because my leg and back were still giving me jip and partly because I just didn't have any energy. So it was meals in bed and lots of Jeremy Kyle. You don't realise how many episodes you're able to watch in one day - far too many for your general disposition!!
My ex Mick stayed around to support Dan and to help out as I couldn't do anything practical in the house. He shopped, cooked and cleaned and made sure I was fed and watered.
By July I had started to pick up a bit. I was getting around a lot more on my crutches and after getting the all clear from my back consultant, I was even driving a bit. Things were starting to look a bit better. Then of course, disaster struck once more............
Thursday 27 September 2012
Coming to terms.....
If anyone was to ask what the worst bit of diagnosis is, for me, undoubtably it was the thought of leaving my son without a mum. I just had to picture his face and I was in floods of tears. How would he manage without his mum looking out for him. Since my ex left, its just been me and him. I spoil him far more than I should but hey, thats my perogative. We've been through some tough times and he's the most important person in my life. I know he has his Dad but its not the same as a mums love. I couldn't and still can't bear to think of him in a world where he hasn't got me to turn to. He was almost 16 at time of diagnosis. And I wasn't sure if I would see him get any older.
That day I was discharged home with my verdict - my niece drove me and we discussed what I should tell him about what I knew. I decided that he needed to know the truth, but without the nitty gritty. I went upstairs whilst she broke the news to him and his dad. I couldn't bear to look at him while she broke his heart. Then I came down and acted the way I normally do - a bit of humour - and a brave face. He wouldnt see me cry - I was the calmest person around.
From that point, I decided I would face whatever was thrown at me full on. Just bring it on....
That day I was discharged home with my verdict - my niece drove me and we discussed what I should tell him about what I knew. I decided that he needed to know the truth, but without the nitty gritty. I went upstairs whilst she broke the news to him and his dad. I couldn't bear to look at him while she broke his heart. Then I came down and acted the way I normally do - a bit of humour - and a brave face. He wouldnt see me cry - I was the calmest person around.
From that point, I decided I would face whatever was thrown at me full on. Just bring it on....
Diagnosis...
Yes, Stage 4 Breast Cancer which has spread to my spine and bones. Dr was very sorry - I looked at him and said at back of my mind I knew. He would do more tests - get the full picture before he could start any treatment. Told me to go home and get over operation. I told him he would need to sort something - I have a 15 yr old son - I couldn't leave him without a mum. He left. I rang my niece to come get me. Then I thought of my son - and fell apart.
Wednesday 26 September 2012
The Beginning......
To start my story, I need to go back to 2010. Probably early on that year. It all seems a lifetime ago now. I had started to get pain in my upper back/shoulder - brought on I thought by turning quickly to view blind spot in car. Frozen shoulder or something of the kind. Not pleasant but these things happen. It would come and go, nothing really to worry about. Sometimes it would move down lower - I got quite good at moving in a way that would not aggravate it any more - but paracetemol were starting to play a part in my life.
A rare visit to my GP to question why it wasnt getting any better - "just a pulled muscle - it will go in its own time". Ok then - suppose I will get on with it. And so the months progressed.
Ended up with a week off work - I never, have time off for sickness - work ethic I was brought up with - and another visit to GP. Explained I was getting a pain in my leg, felt like a trapped nerve. "not related - just muscular". "Don't I need an xray or scan or something?" - "No, backs are funny things - can take up to 2 years to clear up - all in its own time". And a prescription for Paracetemol, Diclofenac and Diazapan. Keep taking the pills!
The months progressed and I was given further prescriptions for the said Paracetemol, Diclofenac and Diazapan. The pain in my leg outdid that in my back. Sometimes heat pads helped, sometimes not. Some days I had to lift my leg into the car - and more worrying, lift it to use the clutch. I work for the police and I'm not so sure that I was quite legally driving at that time. But what do you do when you have to earn a living?
Started with visits to Occupational Health and the lovely Kurt, the physio. Sometimes things arent all doom and gloom! Several uncomfortable massages didnt really do any good - though the view was nice!
The summer came and went - had our usual lovely holiday in Zante, just me and my son Dan. Back and leg behaved while we were away but once we were back, it returned with a vengance. By September it was really starting to give me jip but I kept on taking the pills and waited for the day it would disappear.
One day my back just went on me - couldn't move hardly, the pain was immense. GP came out and said it was spasms, they would clear up on their own. My ex came to stay for a week while I was confined to bed - sorted us out with meals and saw to the chores. But it did clear up slightly - enough to get me back to work anyway.
December arrived and the Xmas Do. My last outing in high heels - I managed ok for the night but ended up in bare feet - usual thing really on the dance floor. Yes I managed a couple of dances - helped on by the wine and jack daniels - for once I didnt need the medication to get me through!
One of my colleagues took me aside one day at work. Didnt want to worry me, but he and his wife had been discussing me - a friend of theirs had been suffering with leg problems like mine and he turned out to have bowel cancer. Yes, I would see the dr again - but hey - its muscular. More Paracetmol, Diclofenac and Diazapan.
Xmas approached. My lack of mobility meant I couldnt really throw myself into the decorations and tree. My ex - Dans dad came and put up my tree. My xmas shopping was all done in Boots, I couldnt walk around the shopping cente. Now my friends will tell you - I am a born shopaholic - this for me was purgatory!! Cooking the xmas dinner was terrible. I couldnt lift anything or reach into the oven. I had invited said ex for dinner with us and it was all handed over to him to finish off. I retired to my usual position on the sofa. Even our usual silly games that I insist on playing on xmas day, didnt get off the ground as I couldnt sit up long enough to play.
But hurrah - a referral to the hospital - maybe an xray was on the cards after all! A very nice Dr - did xrays and prescribed a cortisone injection with manipulation under anasthetic. Lovely. But he did give me a nice set of crutches which helped me get about a lot better. I got up quite a speed along the corridor at work!
Another 6 weeks - no improvement and back to hospital - and finally - an MRI scan. 4 pm on a Thursday. Maybe this would do some good.
Well - by 6 pm, my phone was ringing. It was the Dr - could I get myself to Wigan Infirmary A+E immediately, they were expecting me. Yes, I drove myself there - and from that point it was all systems go with bells ringing. Don't remember what scans, tests and xrays I had that night. Only that it seemed urgent. Ex arrived with my son, to take car home, looked like I wouldnt be going with them. Sister in Law with hubby arrived - everyone looking worried. Everyone but me. One night in A+E then a transfer to Hope Hospital in Manchester - great - even further away for everyone to visit.
Verdict - my spine was unstable - could have gone at any time. I would need an operation to put steel pins in it to strengthen it. Easter Weekend - but life goes on and so I had the operation on Easter Monday - the first lovely weather of the year and I was stuck inside flat on my back.
Royal Wedding Weekend - we had free viewing so we could follow the events of the day. I was still high on morphine - my work friends were getting highly amusing texts from me - not a lot of sense apparantly - seemed fine to me!
Then discharge day - Friday May 6th 2011. A visit from a new consultant - I didnt realise he was an oncologist. Yes he could confirm that I had Stage 4 breast cancer - not curable as it had spread to my spine and bones. Terminal.....................
A rare visit to my GP to question why it wasnt getting any better - "just a pulled muscle - it will go in its own time". Ok then - suppose I will get on with it. And so the months progressed.
Ended up with a week off work - I never, have time off for sickness - work ethic I was brought up with - and another visit to GP. Explained I was getting a pain in my leg, felt like a trapped nerve. "not related - just muscular". "Don't I need an xray or scan or something?" - "No, backs are funny things - can take up to 2 years to clear up - all in its own time". And a prescription for Paracetemol, Diclofenac and Diazapan. Keep taking the pills!
The months progressed and I was given further prescriptions for the said Paracetemol, Diclofenac and Diazapan. The pain in my leg outdid that in my back. Sometimes heat pads helped, sometimes not. Some days I had to lift my leg into the car - and more worrying, lift it to use the clutch. I work for the police and I'm not so sure that I was quite legally driving at that time. But what do you do when you have to earn a living?
Started with visits to Occupational Health and the lovely Kurt, the physio. Sometimes things arent all doom and gloom! Several uncomfortable massages didnt really do any good - though the view was nice!
The summer came and went - had our usual lovely holiday in Zante, just me and my son Dan. Back and leg behaved while we were away but once we were back, it returned with a vengance. By September it was really starting to give me jip but I kept on taking the pills and waited for the day it would disappear.
One day my back just went on me - couldn't move hardly, the pain was immense. GP came out and said it was spasms, they would clear up on their own. My ex came to stay for a week while I was confined to bed - sorted us out with meals and saw to the chores. But it did clear up slightly - enough to get me back to work anyway.
December arrived and the Xmas Do. My last outing in high heels - I managed ok for the night but ended up in bare feet - usual thing really on the dance floor. Yes I managed a couple of dances - helped on by the wine and jack daniels - for once I didnt need the medication to get me through!
One of my colleagues took me aside one day at work. Didnt want to worry me, but he and his wife had been discussing me - a friend of theirs had been suffering with leg problems like mine and he turned out to have bowel cancer. Yes, I would see the dr again - but hey - its muscular. More Paracetmol, Diclofenac and Diazapan.
Xmas approached. My lack of mobility meant I couldnt really throw myself into the decorations and tree. My ex - Dans dad came and put up my tree. My xmas shopping was all done in Boots, I couldnt walk around the shopping cente. Now my friends will tell you - I am a born shopaholic - this for me was purgatory!! Cooking the xmas dinner was terrible. I couldnt lift anything or reach into the oven. I had invited said ex for dinner with us and it was all handed over to him to finish off. I retired to my usual position on the sofa. Even our usual silly games that I insist on playing on xmas day, didnt get off the ground as I couldnt sit up long enough to play.
But hurrah - a referral to the hospital - maybe an xray was on the cards after all! A very nice Dr - did xrays and prescribed a cortisone injection with manipulation under anasthetic. Lovely. But he did give me a nice set of crutches which helped me get about a lot better. I got up quite a speed along the corridor at work!
Another 6 weeks - no improvement and back to hospital - and finally - an MRI scan. 4 pm on a Thursday. Maybe this would do some good.
Well - by 6 pm, my phone was ringing. It was the Dr - could I get myself to Wigan Infirmary A+E immediately, they were expecting me. Yes, I drove myself there - and from that point it was all systems go with bells ringing. Don't remember what scans, tests and xrays I had that night. Only that it seemed urgent. Ex arrived with my son, to take car home, looked like I wouldnt be going with them. Sister in Law with hubby arrived - everyone looking worried. Everyone but me. One night in A+E then a transfer to Hope Hospital in Manchester - great - even further away for everyone to visit.
Verdict - my spine was unstable - could have gone at any time. I would need an operation to put steel pins in it to strengthen it. Easter Weekend - but life goes on and so I had the operation on Easter Monday - the first lovely weather of the year and I was stuck inside flat on my back.
Royal Wedding Weekend - we had free viewing so we could follow the events of the day. I was still high on morphine - my work friends were getting highly amusing texts from me - not a lot of sense apparantly - seemed fine to me!
Then discharge day - Friday May 6th 2011. A visit from a new consultant - I didnt realise he was an oncologist. Yes he could confirm that I had Stage 4 breast cancer - not curable as it had spread to my spine and bones. Terminal.....................
Hi - I'm Sue....
Hi. I'm Sue and I was diagnosed with Stage 4 metastasised Breast Cancer on May 6 2011.
I have only recently found myself able to start reading up on my "condition" and have found myself drawn to several blogs from very inspiring ladies who have shared their stories in such a heartwarming and humorous way.
I hope that I too can share my story in a way that will help others who find themselves in the same unsteady boat as myself. Together we can face what is thrown at us with the one thing that hopefully can not be taken away from us - our spirit.
I am currently midway through 6 sessions of chemo (2 down and 4 to go), having previously had emergency spine surgery, radiotherapy and lumpectomy. All of which I will recount in due course in the telling of my story.
So please bear with me while I play catch up. Any emails will be answered as soon as I can. Maybe one good thing to come out of all this is the chance to make new friends.
By the way - I'm 51, divorced with an 18yr old son called Daniel, am an administrator for the Police and hopefully still have a good sense of humour!
Are you sitting comfortably? - then I'll begin.........
I have only recently found myself able to start reading up on my "condition" and have found myself drawn to several blogs from very inspiring ladies who have shared their stories in such a heartwarming and humorous way.
I hope that I too can share my story in a way that will help others who find themselves in the same unsteady boat as myself. Together we can face what is thrown at us with the one thing that hopefully can not be taken away from us - our spirit.
I am currently midway through 6 sessions of chemo (2 down and 4 to go), having previously had emergency spine surgery, radiotherapy and lumpectomy. All of which I will recount in due course in the telling of my story.
So please bear with me while I play catch up. Any emails will be answered as soon as I can. Maybe one good thing to come out of all this is the chance to make new friends.
By the way - I'm 51, divorced with an 18yr old son called Daniel, am an administrator for the Police and hopefully still have a good sense of humour!
Are you sitting comfortably? - then I'll begin.........
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