It has been a while since I have posted. To be honest, once I got out of hospital, it took quite a bit of time to get over the infection and other treatments. My stamina seems to have taken a permanent hit and I'm still battling to eat enough some days. Dr M had cancelled chemo while I was in hospital because it had nearly
killed me. She said that if I had more the chemo might kill me before
the cancer.
When I was discharged from the Big Hospital, it was arranged that I would attend the Oncology clinic at the Little Hospital the following week. The day arrived and I took myself off the the Little Hospital on the bus. Nervous does not really cover my emotions that day. I got there to find that Dr M was away, and I was seeing Dr R. I was rather stunned when he asked me if I wanted chemo! He explained that in his opinion two weeks in hospital was not quality of life. As my head thought maybe chemo might knock my cancer back a bit more, my heart screamed 'NEVER AGAIN'. When I realised he was not going to make me have chemo, I calmed down a bit. We decided that the issue would be discussed after my CT scan four days away.
Thursday 20 June was the day appointed for the discussion. Mr G took a special family day to come with me to the hospital. We had discussed my last appointment and felt that Dr R did not want to make the 'no more chemo' decision, and that we definitely wanted to talk to Dr M about it. The clinic was running late and my name was called to see Dr R. I said I wanted to see Dr M and kept waiting. My Clinical Psychologist was in the department so I did get a chance to make an appointment with her to talk about all the recent stuff!
We eventually got into see Dr M an hour late. I was so relieved we had waited. She , too, asked about chemo. I realised that they did not want me to think they were writing me off. She had already said that all the other chemo's would knock my very weak immune system out completely with possibly fatal consequences. So a mutual decision was made that I would have no more chemo. The two cycles I had managed had knocked my cancer back, so I don't have ascites, and my disease is stable. Of course we have no idea how long it will hold, but it has helped.
What now then? I am taking an oestrogen suppressing drug often used for breast cancer patients and is being used sometimes in ovarian cancer for patients whose tumours (from original operation) have hormone receptors on them. It had been established at the Multi- Disciplinary Team meeting* (MDT) that my tumour had got hormone receptors meeting the criteria. It is putting me into menopause #3. I had a normal one in 2009. a surgically induced one in 2011 when my ovaries were removed, and now a drug induced one. I can stay on this drug for years (if I have years!) but its efficacy may not be know for six months or so.
So, now I know I do not have to endure any more chemo, my main emotion is relief. The chemo and stress have robbed me of half my hair, given me stress related tremors which make functioning difficult. I am half the woman I was. I need to use a wheelchair when we are out and about. However there is a silver lining, I can finally make some plans. We can book some holiday. We can arrange to visit people. I can plan some kind of a future without having to factor in chemo down time and living in constant fear of another hospitalisation.
Life is good.
* The MDT meeting has Macmillan Nurses, Gynaecologists, Oncologists, Radiologists etc so is truly multi-disciplinary and they look at patients and their needs from a variety of opinions, and make advised decisions regarding care.
Sunday, 23 June 2013
Saturday, 1 June 2013
You only need to ask...
Another no holds barred post... just so no-one gets a nasty surprise.
From time to time, we hear heart-rending stories of how people have died in appalling pain seemingly without adequate pain relief.
More than two years ago, when I was first diagnosed with cancer, I had a conversation with my GP about pain relief during my treatment. He assured me that I did not have to suffer, indeed should NOT do so, all I had to do was ask. I did ask for different forms of pain relief during my treatment and on each occasion we made a decision regarding my needs together.
Fast forward to now. Obviously my needs are now different given my life limited status. I am interested in dying with dignity (note lack of capitals) so I have been doing a little research. Make no mistake though, I want to LIVE as long as I can.
One article I read stated that their relative had had to suffer without adequate pain relief, being in excruciating agony for the last hour between four hourly due doses of morphine. I was surprised because, already in my experience, this has been sorted out already. I am going to outline in detail how this has worked.
First, I went to my GP in intolerable pain at the time I had severe ascites. He prescribed Oro-morph for me. This is morphine diluted in ethanol and works very quickly. Later that day, I was admitted to hospital, and my Little Hospital Macmillan nurse came to see me. She asked me what I knew about morphine. My first remark was that I knew it was addictive. Her reply was that if morphine was required for severe pain addiction was not really an issue. She went on to explain that they were going to add up all the oro-morph I needed/used that night so that they could calculate a different option for me. All through the night, whenever I needed pain relief the nurses brought me my medicine. I was never told I'd had too much and refused my pain relief. That morning a calculation was made by the doctors and I was prescribed a regular amount of Zo-Morph. This is a sustained release form of morphine. Capsules contain tiny beads which release the tiny dose of morphine evenly over time. The dose of this was calculated for now but, I was assured, could be reviewed WITHOUT an upper limit, at any time according to my pain needs. I still have access to my liquid morphine, should I need a top up. If I need frequent top ups this is a cue to increase the dose of the sustained release version.
During my recent stay at the Big Hospital I was reassured on admittance that my pain relief needs would be a high priority. Indeed, I was regularly asked if I needed pain relief. When I was especially poorly with nausea I was offered a meeting with the Big Hospital Palliative Care nurse. This was not to sort out my pain but my nausea. In the end, my needs were met by reviewed anti sickness medicine but I would have been offered a syringe driver (a method of constantly delivered medicine in infinitesimal amounts) which would be loaded with medicine every day. The needle is minute and is inserted just under the skin. Syringe drivers can also be used to deliver a cocktail of drugs in the same constant manner.
One complaint I have read on more than one occasion is that patients only see their consultants infrequently and for very short periods. I have a fabulous consultant in Dr M. She is very caring, very dedicated and I know she has my best interests at heart. However she cannot be on the ward all the time, she has clinics to attend in the Little Hospital as well as the Big Hospital. What she does have are House Officers who are her eyes, ears, hands and legs and the ward has Registrars available 24/7. If my medication needed changing, reviewing or adding to, at any time, these doctors were available to do so. If I asked a nurse about an issue, they were able to ask a doctor very quickly. I will admit that this is a specialist Oncology ward and that people are not always so lucky to get such specialist care.
I am an ordinary person. The care I get is available to all who have a gynaecological cancer at the Big and Little Hospitals. There are Macmillan Clinical Specialist Nurses at both hospitals ( I know them all). Palliative Care nurses are at both hospitals. Both towns have hospices providing palliative care. I am receiving palliative care.
Please note, palliative care does not mean end of life care. I am nowhere near the end of my life, in as much as any of us know.
What I have done is heed what my GP told me. All you need to do is ask. I have asked for help, I have asked for what I needed. None of the professionals caring for me have time to keep asking me if I'm ok when I'm at home. It is not their job. My job is to realise when I need help and then to ask for it.
This I have done, and I will continue to do so... and should I no longer be able to so myself, I know that my family will do it for me.
From time to time, we hear heart-rending stories of how people have died in appalling pain seemingly without adequate pain relief.
More than two years ago, when I was first diagnosed with cancer, I had a conversation with my GP about pain relief during my treatment. He assured me that I did not have to suffer, indeed should NOT do so, all I had to do was ask. I did ask for different forms of pain relief during my treatment and on each occasion we made a decision regarding my needs together.
Fast forward to now. Obviously my needs are now different given my life limited status. I am interested in dying with dignity (note lack of capitals) so I have been doing a little research. Make no mistake though, I want to LIVE as long as I can.
One article I read stated that their relative had had to suffer without adequate pain relief, being in excruciating agony for the last hour between four hourly due doses of morphine. I was surprised because, already in my experience, this has been sorted out already. I am going to outline in detail how this has worked.
First, I went to my GP in intolerable pain at the time I had severe ascites. He prescribed Oro-morph for me. This is morphine diluted in ethanol and works very quickly. Later that day, I was admitted to hospital, and my Little Hospital Macmillan nurse came to see me. She asked me what I knew about morphine. My first remark was that I knew it was addictive. Her reply was that if morphine was required for severe pain addiction was not really an issue. She went on to explain that they were going to add up all the oro-morph I needed/used that night so that they could calculate a different option for me. All through the night, whenever I needed pain relief the nurses brought me my medicine. I was never told I'd had too much and refused my pain relief. That morning a calculation was made by the doctors and I was prescribed a regular amount of Zo-Morph. This is a sustained release form of morphine. Capsules contain tiny beads which release the tiny dose of morphine evenly over time. The dose of this was calculated for now but, I was assured, could be reviewed WITHOUT an upper limit, at any time according to my pain needs. I still have access to my liquid morphine, should I need a top up. If I need frequent top ups this is a cue to increase the dose of the sustained release version.
During my recent stay at the Big Hospital I was reassured on admittance that my pain relief needs would be a high priority. Indeed, I was regularly asked if I needed pain relief. When I was especially poorly with nausea I was offered a meeting with the Big Hospital Palliative Care nurse. This was not to sort out my pain but my nausea. In the end, my needs were met by reviewed anti sickness medicine but I would have been offered a syringe driver (a method of constantly delivered medicine in infinitesimal amounts) which would be loaded with medicine every day. The needle is minute and is inserted just under the skin. Syringe drivers can also be used to deliver a cocktail of drugs in the same constant manner.
One complaint I have read on more than one occasion is that patients only see their consultants infrequently and for very short periods. I have a fabulous consultant in Dr M. She is very caring, very dedicated and I know she has my best interests at heart. However she cannot be on the ward all the time, she has clinics to attend in the Little Hospital as well as the Big Hospital. What she does have are House Officers who are her eyes, ears, hands and legs and the ward has Registrars available 24/7. If my medication needed changing, reviewing or adding to, at any time, these doctors were available to do so. If I asked a nurse about an issue, they were able to ask a doctor very quickly. I will admit that this is a specialist Oncology ward and that people are not always so lucky to get such specialist care.
I am an ordinary person. The care I get is available to all who have a gynaecological cancer at the Big and Little Hospitals. There are Macmillan Clinical Specialist Nurses at both hospitals ( I know them all). Palliative Care nurses are at both hospitals. Both towns have hospices providing palliative care. I am receiving palliative care.
Please note, palliative care does not mean end of life care. I am nowhere near the end of my life, in as much as any of us know.
What I have done is heed what my GP told me. All you need to do is ask. I have asked for help, I have asked for what I needed. None of the professionals caring for me have time to keep asking me if I'm ok when I'm at home. It is not their job. My job is to realise when I need help and then to ask for it.
This I have done, and I will continue to do so... and should I no longer be able to so myself, I know that my family will do it for me.
Monday, 27 May 2013
The Monsoon Week 2
Firstly - something amazing happened. One of the surgeons involved with my drain removal apologised to me, in the canteen. I nearly fell off my chair. Conversations with staff on the ward have persuaded me that this is highly unusual behaviour. I am pleased to say I was gracious to him.
So Monday 20 May. The cold sore on my shoulder deemed me unfit to share the bay so off to a room I went. My consultant sent her House Officer to tell me that I was going to be in hospital for at least another week. The microbiologists recommended a full fourteen days of mega IV antibiotics and this needed to happen in hospital. To tell the truth I was still feeling really poorly and was on various drips to correct my ailing blood chemistry. I got into bed and stayed there.
Life was being much improved however by the very clever internet dongle I've been given. This means I can watch TV on my laptop, and because we have Sky, I can watch Sky programmes in real time via Sky Go. We do have access to internet/TV via bedside screens but to get good choice it costs £20 for three days. My dongle means I have internet/TV for much less. Definitely a WIN. The other wins have been the lovely visits that I have had from family and friends. Hospital visiting is hard but it is such a lifeline with 'normal' life that the value cannot be overestimated. Being in hospital is very lonely, for although there are people everywhere they are not those with whom we have loving intimate relationships. I have been blessed by some very kind and caring staff who have mopped my tears and rubbed my back, but they cannot replace the hugs of those we love, both friends and family.
Things seemed to be going well, when on Wednesday I developed nausea and vomiting - both symptoms I thought I had left behind. I was given some extra anti sickness meds which have helped some. There is a thought that the antibiotics could be to blame.
Friday 24 May was our wedding anniversary and I thought Mr G was not going to be able to visit. A sixty mile round trip to visit is expensive and tiring. I did get some good news, though, because I was being kept in hospital I was to be given ward leave on Sunday between my lunchtime and evening doses of antibiotic. I was beyond excited, the promise of 8 hours outside the hospital was amazing. I texted Mr G to tell him.
In the afternoon my daughter brought my grandson to visit. He is too little to come on the ward but I was able to go to the restaurant. We bought drinks and chips and cakes and settled down but I was sought out to go and have an ultrasound scan. Fortunately this did not take too long and I was soon able to rejoin them. My grandson had found his feet and was toddling from chair to chair while enjoying some cake. He was soon laughing and throwing himself into my arms - such joy. I wish I could bottle it! Did I mind the chocolate cake on my pink robe? No, not for one minute.
I heard people arriving for evening visiting and had tried to ring Mr G an hour earlier but had got no answer. I assumed he was shopping for food. Suddenly a familiar and much beloved face peeped round the door frame, it was Mr G come to see me. My day was complete.
Saturday brought more family visiting. Again opportunities to catch up and news to share. There is nothing that directs the mind as much as realising that occasions might be limited when it comes to relationships.
Sunday saw me all in a dither. Please let nothing get in the way of my precious home time. It didn't. I had some precious hours with my lovely Mr G, I had a nap in my OWN bed. We discovered that travelling in a car is far less painful now my infection is gone. The only sad part was that I knew I had to go back.
Which brings us to today. I've finished my antibiotics. My cannula has gone. As long as all my obs stay ok, I may well go home tomorrow. Only time will tell.
So Monday 20 May. The cold sore on my shoulder deemed me unfit to share the bay so off to a room I went. My consultant sent her House Officer to tell me that I was going to be in hospital for at least another week. The microbiologists recommended a full fourteen days of mega IV antibiotics and this needed to happen in hospital. To tell the truth I was still feeling really poorly and was on various drips to correct my ailing blood chemistry. I got into bed and stayed there.
Life was being much improved however by the very clever internet dongle I've been given. This means I can watch TV on my laptop, and because we have Sky, I can watch Sky programmes in real time via Sky Go. We do have access to internet/TV via bedside screens but to get good choice it costs £20 for three days. My dongle means I have internet/TV for much less. Definitely a WIN. The other wins have been the lovely visits that I have had from family and friends. Hospital visiting is hard but it is such a lifeline with 'normal' life that the value cannot be overestimated. Being in hospital is very lonely, for although there are people everywhere they are not those with whom we have loving intimate relationships. I have been blessed by some very kind and caring staff who have mopped my tears and rubbed my back, but they cannot replace the hugs of those we love, both friends and family.
Things seemed to be going well, when on Wednesday I developed nausea and vomiting - both symptoms I thought I had left behind. I was given some extra anti sickness meds which have helped some. There is a thought that the antibiotics could be to blame.
Friday 24 May was our wedding anniversary and I thought Mr G was not going to be able to visit. A sixty mile round trip to visit is expensive and tiring. I did get some good news, though, because I was being kept in hospital I was to be given ward leave on Sunday between my lunchtime and evening doses of antibiotic. I was beyond excited, the promise of 8 hours outside the hospital was amazing. I texted Mr G to tell him.
In the afternoon my daughter brought my grandson to visit. He is too little to come on the ward but I was able to go to the restaurant. We bought drinks and chips and cakes and settled down but I was sought out to go and have an ultrasound scan. Fortunately this did not take too long and I was soon able to rejoin them. My grandson had found his feet and was toddling from chair to chair while enjoying some cake. He was soon laughing and throwing himself into my arms - such joy. I wish I could bottle it! Did I mind the chocolate cake on my pink robe? No, not for one minute.
I heard people arriving for evening visiting and had tried to ring Mr G an hour earlier but had got no answer. I assumed he was shopping for food. Suddenly a familiar and much beloved face peeped round the door frame, it was Mr G come to see me. My day was complete.
Saturday brought more family visiting. Again opportunities to catch up and news to share. There is nothing that directs the mind as much as realising that occasions might be limited when it comes to relationships.
Sunday saw me all in a dither. Please let nothing get in the way of my precious home time. It didn't. I had some precious hours with my lovely Mr G, I had a nap in my OWN bed. We discovered that travelling in a car is far less painful now my infection is gone. The only sad part was that I knew I had to go back.
Which brings us to today. I've finished my antibiotics. My cannula has gone. As long as all my obs stay ok, I may well go home tomorrow. Only time will tell.
Saturday, 25 May 2013
The monsoon arrived... Week 1
I will soon be running out of analogies for my titles so really hope this run of hospitalisations stops soon.
I had been feeling a bit rubbish (read really poorly) since my chemo on Thursday 9 May. That had not gone well as I was very sick not long into my treatment. The drip was stopped and I was topped up with antisickness meds. Four hours after I started, with the unit closing around us Mr G and I made our escape. To be honest, the Saturday and Sunday passed in a blur and I should probably have sought medical advice.
Monday arrived, and I was feeling bilious, until finally my poor tum could take no more and I was very sick. To put it bluntly all the food and drink I had consumed for 18 hours returned untouched. I realised that this was very bad news and rang the Little Hospital Chemo Unit. In truth I knew what the answer would be, go straight to the Big hospital Oncology unit as quickly as possible. Fortunately Mr G arrived home in time to take me to hospital. We tried for an ambulance but we would have had to wait an hour and a half and I could not wait.
We were greeted by the now familiar staff on the Oncology Ward. I had a cannula inserted and a dose of mega antibiotic was delivered. Once it was established I had some functioning immune system I was taken to the four bed ladies bay. Much of the next few days is a bit of a blur (mercifully). It transpired that my permanent drain was badly infected (and part of my tummy with it) and that my kidneys were not working well at all. I was given fluids and minerals via drip and large amounts of mega antibiotic.
There was a very unpleasant interlude regarding the removal of my drain. The type of drain I had is unfamiliar in the Big Hospital and the surgical team were sure that they could 'pull it out' with the aid of some local anaesthetic. I vigorously disagreed with this pleading with them to contact the Little Hospital for advice. My pleas were ignored and the surgical team set about removing my drain under local on my bed on the ward. It took them far too long to realise that I was right and that the WHOLE procedure should have been undertaken under a general anaesthetic in theatre. I was put on the emergency list for the next day.
I was nil by mouth from 6am. By 9.15pm the ward staff and Mr G were becoming very concerned, I had had nothing to eat or drink for 15 hours, and we still did not know if I was to have surgery or not.
After phone calls it became apparent that I had been triaged off the list as being less needy that the others. At this point I lost the plot. I could not believe that I was considered so unimportant that I was not even worth notifying about my surgery. For the first time in my life I was sedated, and I am very grateful to the ward staff for doing so to spare me more distress.
The next day was Friday. I was once again nil by mouth and eventually went to theatre mid afternoon. There was an unfortunate incident regarding me, a bedpan and an embarrassed male anaesthetist that I can nearly (but not quite) laugh about now. When I got back to that ward I was drowsy, sick and sore and glad to hunker down and sleep my trials off.
On Saturday morning I felt a bit morning after the night before, but was able to take me and my drip to the bathroom where I was horrified to see a bruise on my chest displaying knuckle marks. Before you ask, no it was not in the heart restarting place! I asked how this could have happened and the answer came back that the procedure had been more difficult than anticipated (NO sh*t Sherlock) I was not really satisfied with this, nor were my nurses but evidently there were no further notes.
I rested and slept through the remainder of Saturday and Sunday.
Monday 20 May marked a whole week in hospital. I was still on mega antibiotics, still having my kidney function treated and to cap it off, I developed a cold sore on my shoulder which meant I was moved to a single room. This meant that at last I was away from batty lady and her long and ill timed episodes on the commode!
To be continued...
I had been feeling a bit rubbish (read really poorly) since my chemo on Thursday 9 May. That had not gone well as I was very sick not long into my treatment. The drip was stopped and I was topped up with antisickness meds. Four hours after I started, with the unit closing around us Mr G and I made our escape. To be honest, the Saturday and Sunday passed in a blur and I should probably have sought medical advice.
Monday arrived, and I was feeling bilious, until finally my poor tum could take no more and I was very sick. To put it bluntly all the food and drink I had consumed for 18 hours returned untouched. I realised that this was very bad news and rang the Little Hospital Chemo Unit. In truth I knew what the answer would be, go straight to the Big hospital Oncology unit as quickly as possible. Fortunately Mr G arrived home in time to take me to hospital. We tried for an ambulance but we would have had to wait an hour and a half and I could not wait.
We were greeted by the now familiar staff on the Oncology Ward. I had a cannula inserted and a dose of mega antibiotic was delivered. Once it was established I had some functioning immune system I was taken to the four bed ladies bay. Much of the next few days is a bit of a blur (mercifully). It transpired that my permanent drain was badly infected (and part of my tummy with it) and that my kidneys were not working well at all. I was given fluids and minerals via drip and large amounts of mega antibiotic.
There was a very unpleasant interlude regarding the removal of my drain. The type of drain I had is unfamiliar in the Big Hospital and the surgical team were sure that they could 'pull it out' with the aid of some local anaesthetic. I vigorously disagreed with this pleading with them to contact the Little Hospital for advice. My pleas were ignored and the surgical team set about removing my drain under local on my bed on the ward. It took them far too long to realise that I was right and that the WHOLE procedure should have been undertaken under a general anaesthetic in theatre. I was put on the emergency list for the next day.
I was nil by mouth from 6am. By 9.15pm the ward staff and Mr G were becoming very concerned, I had had nothing to eat or drink for 15 hours, and we still did not know if I was to have surgery or not.
After phone calls it became apparent that I had been triaged off the list as being less needy that the others. At this point I lost the plot. I could not believe that I was considered so unimportant that I was not even worth notifying about my surgery. For the first time in my life I was sedated, and I am very grateful to the ward staff for doing so to spare me more distress.
The next day was Friday. I was once again nil by mouth and eventually went to theatre mid afternoon. There was an unfortunate incident regarding me, a bedpan and an embarrassed male anaesthetist that I can nearly (but not quite) laugh about now. When I got back to that ward I was drowsy, sick and sore and glad to hunker down and sleep my trials off.
On Saturday morning I felt a bit morning after the night before, but was able to take me and my drip to the bathroom where I was horrified to see a bruise on my chest displaying knuckle marks. Before you ask, no it was not in the heart restarting place! I asked how this could have happened and the answer came back that the procedure had been more difficult than anticipated (NO sh*t Sherlock) I was not really satisfied with this, nor were my nurses but evidently there were no further notes.
I rested and slept through the remainder of Saturday and Sunday.
Monday 20 May marked a whole week in hospital. I was still on mega antibiotics, still having my kidney function treated and to cap it off, I developed a cold sore on my shoulder which meant I was moved to a single room. This meant that at last I was away from batty lady and her long and ill timed episodes on the commode!
To be continued...
Tuesday, 7 May 2013
... but it pours!
Home I went on Friday 26 April. I had not had my second chemo and was in a lot of pain from where my tooth had been extracted. We had a quietish weekend as I did not feel up to much, although we had some short trips out. I had a slightly raised temperature on Sunday and I had a niggly pain near the site of my drain. I could not take Oromorph because the morphine is dissolved in ethanol (a type of alcohol) and one thing you MUST NOT DO when taking Metronidazole is have any alcohol because it will cause fierce prolonged vomiting. The Metronidazole was making me feel sick anyway!
By 03.00 on Monday 29 April, the pain in my side was unbearable. I prowled the house for a while, discovered I had a fever so rang the Oncology Ward at the Big Hospital. The result was another summons to the Oncology Ward. By some premonition I had repacked the hospital bag on Sunday morning so we were quickly ready to go. The journey in went by in a blur of pain and nausea.
I was admitted to the triage room, where I was once again cannulated, bloods taken and a large syringe full of antibiotics administered. (There is a pattern developing here.) I felt so ill, I lay down on an examination couch and fell asleep. A nurse spotted me and hastened back with a pillow and a blanket, it felt heavenly.
My slumbers were disturbed by samples of tummy fluid being taken ( I will draw a veil over the mess on the floor and the todo with the dressing, except to say Mr G had to talk them through the procedure!)
As soon as my bloods showed that I was not neutropenic (have no or very impaired immunity) I was taken to the Women's Bay and shown my bed. I got straight in clothes and all!
Monday passed in a blur of doctors, consultants, nurses, my Big Hospital Macmillan Nurse and health care assistants taking observations. I was finally given some better pain relief and by tea time was feeling more like Ali.
On Tuesday 30 April, I was nil by mouth from 9am as I was scheduled for an ultrasound scan. This was to see if my drain was infected. If it had been, I would have needed an operation to remove it.
My blood pressure has recently become so low that my hypertension medication was stopped last week. I was put on a saline drip to try to boost my hydration as I felt like a 'crisp'.
After I got back from my scan ( showed nothing of great concern) I got a piece of good news. A CA125 test had been taken to check on the effect (or not) of my first chemo session. To my delight I discovered that the blood marker had reduced from 1100 to 480. I was so pleased I nearly cried as I had felt so ill that I thought the chemo had had little effect.
On Wednesday 1 May, I was told I could go home as long as my bloods and cultures were ok. While I was waiting for the results my consultant came to see me. She agreed I was doing well and that I should be able to resume my chemo, not on 2 May, but on 9 May giving me time to build up some resilience and strength.
She also agreed that I could have a permanent line fitted. This enables medicines to be given and blood to be taken without the need to stab me with needles! I shall be talking to the nurses on the Chemo Suite at the Little Hospital about it on Thursday.
Here ends the saga of six days out of eight spent in hospital. The silver lining is that I will never again be afraid of needing to go to the Oncology Ward at the Big Hospital. I am now very familiar with the staff and the routines. I also discovered that a volunteer brings a minibar round once a week, with such things as port, Baileys, brandy and savoury and sweet nibbles. This just goes to illustrate the very different nature of an Oncology Ward where people can be inpatients for long periods.
I'm under no illusions that the rest of this run of treatment is going to be smooth. The reaction of my body to the first chemo does not bode well. However, now I know the Oncology Ward and with my line (once sited) enabling speedy delivery of meds and blood taking, things will be less frightening and more comfortable.
By 03.00 on Monday 29 April, the pain in my side was unbearable. I prowled the house for a while, discovered I had a fever so rang the Oncology Ward at the Big Hospital. The result was another summons to the Oncology Ward. By some premonition I had repacked the hospital bag on Sunday morning so we were quickly ready to go. The journey in went by in a blur of pain and nausea.
I was admitted to the triage room, where I was once again cannulated, bloods taken and a large syringe full of antibiotics administered. (There is a pattern developing here.) I felt so ill, I lay down on an examination couch and fell asleep. A nurse spotted me and hastened back with a pillow and a blanket, it felt heavenly.
My slumbers were disturbed by samples of tummy fluid being taken ( I will draw a veil over the mess on the floor and the todo with the dressing, except to say Mr G had to talk them through the procedure!)
As soon as my bloods showed that I was not neutropenic (have no or very impaired immunity) I was taken to the Women's Bay and shown my bed. I got straight in clothes and all!
Monday passed in a blur of doctors, consultants, nurses, my Big Hospital Macmillan Nurse and health care assistants taking observations. I was finally given some better pain relief and by tea time was feeling more like Ali.
On Tuesday 30 April, I was nil by mouth from 9am as I was scheduled for an ultrasound scan. This was to see if my drain was infected. If it had been, I would have needed an operation to remove it.
My blood pressure has recently become so low that my hypertension medication was stopped last week. I was put on a saline drip to try to boost my hydration as I felt like a 'crisp'.
After I got back from my scan ( showed nothing of great concern) I got a piece of good news. A CA125 test had been taken to check on the effect (or not) of my first chemo session. To my delight I discovered that the blood marker had reduced from 1100 to 480. I was so pleased I nearly cried as I had felt so ill that I thought the chemo had had little effect.
On Wednesday 1 May, I was told I could go home as long as my bloods and cultures were ok. While I was waiting for the results my consultant came to see me. She agreed I was doing well and that I should be able to resume my chemo, not on 2 May, but on 9 May giving me time to build up some resilience and strength.
She also agreed that I could have a permanent line fitted. This enables medicines to be given and blood to be taken without the need to stab me with needles! I shall be talking to the nurses on the Chemo Suite at the Little Hospital about it on Thursday.
Here ends the saga of six days out of eight spent in hospital. The silver lining is that I will never again be afraid of needing to go to the Oncology Ward at the Big Hospital. I am now very familiar with the staff and the routines. I also discovered that a volunteer brings a minibar round once a week, with such things as port, Baileys, brandy and savoury and sweet nibbles. This just goes to illustrate the very different nature of an Oncology Ward where people can be inpatients for long periods.
I'm under no illusions that the rest of this run of treatment is going to be smooth. The reaction of my body to the first chemo does not bode well. However, now I know the Oncology Ward and with my line (once sited) enabling speedy delivery of meds and blood taking, things will be less frightening and more comfortable.
Monday, 6 May 2013
It never rains....
I developed toothache on Sunday 21 April so I went to the dentist, as soon as I could, who did an x-ray. There appeared to be no abscess so I was advised to clean well around the tooth as the pain indicated a gum problem.
Fast forward twenty four hours to Wednesday 24 April, tooth even more painful. I could not attend dentist's emergency session as I had a pre-chemo blood test booked for first thing in the morning. When I got back home I rang the Chemo Suite for advice. They told me to see my GP with urgency to obtain some antibiotics. I acquired an emergency appointment by using the chemotherapy trump card. To cut a long story short. GP referred me straight back to my dentist... don't ask.
By this time I had already driven 33 miles. I was now faced with another 40 mile round trip to the dentist. I was starting to feel a bit poorly too.
My dentist was fab, as always, and she and her senior devised a plan of action. I set off home. I felt dreadful. I was getting a ringing in my ears. I got home safely by some kind of miracle.
Being me, I did not rest when I got home, but got on with jobs. That is until I nearly blacked out. This unnerved me sufficiently that I took my temperature. To my horror it was 39.4oC. I tried to contact Mr G, then rang my Macmillan Nurse. I should have rung the Chemo Suite. My Nurse told me to take some paracetamol and she would make some calls. Shortly, a nurse from the chemo suite rang me and told me to go to the Big Hospital at once. I said my District Nurse was due any minute to drain and dress my tum, it was agreed I could do this.
The drive to the Big Hospital was awful, the roads were so bumpy and it was the rush hour. Eventually we arrived at the Oncology Ward where I was quickly ushered to a room. I was speedily cannulated and a large dose of IV antibiotics delivered. Mr G and I then spent a couple of hours thinking I might go home, but it was not to be. Due to my fever and vomiting (by this time nothing would stay put) I was in and would probably be in all the next day too.
The next day I kept having antibiotics and paracetamol and my temperature was normal. As I was in hospital I was, of course, unable to go to my dentist to fulfil the cunning plan. In an effort to sort my still extremely sore tooth out, I was taken down to the Maxillo-Facial Dept with the hope that they would extract my tooth in hospital. Imagine my incredulity when I was told, somewhat sheepishly, that they did not have the right drill to cut through my bridge, to which the tooth was attached. A plan was devised whereby I would go to my dentist in the morning to have my bridge divided then I was to return to hospital to have the tooth removed. This did not happen. A consultant would not allow it.
Friday dawned. More sitting and waiting. I had bloods taken late and the results arrived after lunch.
Suddenly action stations...
I was to go to my dentist and have my tooth removed! I hastily called my dental surgery who rose to the occasion splendidly. My dentist cleared her afternoon appointments to see me and take my troublesome tooth out. I was sent home to recover with Metronidazole and a set of instructions.
The source of my temperature was never discovered but at least I was home for the weekend.
Fast forward twenty four hours to Wednesday 24 April, tooth even more painful. I could not attend dentist's emergency session as I had a pre-chemo blood test booked for first thing in the morning. When I got back home I rang the Chemo Suite for advice. They told me to see my GP with urgency to obtain some antibiotics. I acquired an emergency appointment by using the chemotherapy trump card. To cut a long story short. GP referred me straight back to my dentist... don't ask.
By this time I had already driven 33 miles. I was now faced with another 40 mile round trip to the dentist. I was starting to feel a bit poorly too.
My dentist was fab, as always, and she and her senior devised a plan of action. I set off home. I felt dreadful. I was getting a ringing in my ears. I got home safely by some kind of miracle.
Being me, I did not rest when I got home, but got on with jobs. That is until I nearly blacked out. This unnerved me sufficiently that I took my temperature. To my horror it was 39.4oC. I tried to contact Mr G, then rang my Macmillan Nurse. I should have rung the Chemo Suite. My Nurse told me to take some paracetamol and she would make some calls. Shortly, a nurse from the chemo suite rang me and told me to go to the Big Hospital at once. I said my District Nurse was due any minute to drain and dress my tum, it was agreed I could do this.
The drive to the Big Hospital was awful, the roads were so bumpy and it was the rush hour. Eventually we arrived at the Oncology Ward where I was quickly ushered to a room. I was speedily cannulated and a large dose of IV antibiotics delivered. Mr G and I then spent a couple of hours thinking I might go home, but it was not to be. Due to my fever and vomiting (by this time nothing would stay put) I was in and would probably be in all the next day too.
The next day I kept having antibiotics and paracetamol and my temperature was normal. As I was in hospital I was, of course, unable to go to my dentist to fulfil the cunning plan. In an effort to sort my still extremely sore tooth out, I was taken down to the Maxillo-Facial Dept with the hope that they would extract my tooth in hospital. Imagine my incredulity when I was told, somewhat sheepishly, that they did not have the right drill to cut through my bridge, to which the tooth was attached. A plan was devised whereby I would go to my dentist in the morning to have my bridge divided then I was to return to hospital to have the tooth removed. This did not happen. A consultant would not allow it.
Friday dawned. More sitting and waiting. I had bloods taken late and the results arrived after lunch.
Suddenly action stations...
I was to go to my dentist and have my tooth removed! I hastily called my dental surgery who rose to the occasion splendidly. My dentist cleared her afternoon appointments to see me and take my troublesome tooth out. I was sent home to recover with Metronidazole and a set of instructions.
The source of my temperature was never discovered but at least I was home for the weekend.
Monday, 22 April 2013
My Ding-a-ling
It is now 12 days since I was fitted with my peritoneal drain to help manage my ascites (fluid collecting within my peritoneum)
This is affectionately known as my ding-a-ling.
I now wear it curled around on the foam pad, covered with some gauze and the whole assembly is then covered by a large flexible plastic dressing. It is not invisible but so what, it is part of me.
The reddening above the foam pad is where the drain was 'tunnelled' under my skin to keep it secure and reduce infection.
When the District Nurse comes to drain my tummy, she first removes all the dressings mentioned above. She then opens the new drain kit.
This picture shows the yellow clinical waste bag (collected free by local council), the collecting bag showing the connection to my ding-a-ling, and the blue pack which has gloves, dressings etc.
Here is a picture of the contents of the blue pack.
I took these pictures of the booklet that explains exactly how to use the drain and put a fresh dressing on.
When I have had chemo, I become cytotoxic. ( cytotoxic linky for the very interested ) Basically this means that my blood, bodily waste AND of course, the fluid in my tummy can cause damage to living cells. To reduce the risk to the nurses I will be doing my own draining for the time I am cytotoxic. I have a box of drain packs and other supplies here at home and the perfect step by step instructions in the booklet ( link to booklet for EXTREMELY interested.)
I am now going to be drained three times a week so that I can be kept more comfortable. It is hoped that the chemotherapy will stop the fluid building up soon and there will be reduced need for draining. Until then, I am very pleased to have my ding-a-ling.
This is affectionately known as my ding-a-ling.
I now wear it curled around on the foam pad, covered with some gauze and the whole assembly is then covered by a large flexible plastic dressing. It is not invisible but so what, it is part of me.
The reddening above the foam pad is where the drain was 'tunnelled' under my skin to keep it secure and reduce infection.
When the District Nurse comes to drain my tummy, she first removes all the dressings mentioned above. She then opens the new drain kit.
This picture shows the yellow clinical waste bag (collected free by local council), the collecting bag showing the connection to my ding-a-ling, and the blue pack which has gloves, dressings etc.
Here is a picture of the contents of the blue pack.
I took these pictures of the booklet that explains exactly how to use the drain and put a fresh dressing on.
When I have had chemo, I become cytotoxic. ( cytotoxic linky for the very interested ) Basically this means that my blood, bodily waste AND of course, the fluid in my tummy can cause damage to living cells. To reduce the risk to the nurses I will be doing my own draining for the time I am cytotoxic. I have a box of drain packs and other supplies here at home and the perfect step by step instructions in the booklet ( link to booklet for EXTREMELY interested.)
I am now going to be drained three times a week so that I can be kept more comfortable. It is hoped that the chemotherapy will stop the fluid building up soon and there will be reduced need for draining. Until then, I am very pleased to have my ding-a-ling.
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