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...
Saturday, 25 May 2013
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.
Wednesday, 17 April 2013
... and for my next trick...
A huge amount has happened since I last blogged here, so here goes.
By Tuesday 9 April, my abdomen was extremely swollen and I was in severe pain and discomfort. I first went to my GP for some stronger pain relief. He prescribed Oromorph (a liquid form of morphine) and rang my oncologist for advice. He had to leave a message, so I said I'd ring Lee, my Nurse Specialist, and see what she could do. Lee got back to me very quickly and I was admitted, yet again, to the Assessment Unit.
I was greeted like an old friend by Fanny, one of the nurses who had cared for me before, and she quickly settled me in.
A doctor was summoned and a decision made that a more permanent draining solution needed to be found. I was scheduled to have a permanent drain sited the next morning.
Tuesday night was one of the longest and most painful of my life. I could feel the pressure inside my body literally squeezing the life out of my internal organs. I was on Oromorph on demand, but the pain was such that I was prowling my room every hour or so.
One of the good things that came from this was that my morphine demand was calculated and I was given a slow release alternative in the form of Zomorph. This steadily releases the morphine over 12 hours.
The doctor who fitted the drain, under local anaesthetic on Wednesday morning, was wonderful. He took time to explain, to let me catch my breath, to use extra local anaesthetic and made what was deeply unpleasant, bearable.
Between Wednesday morning and Thursday lunchtime 9l of fluid was drained from my tummy. The relief was substantial, quite quickly. What a joy to be able to take a big breath again!
The nurses and HCA's on Maple Ward are absolutely wonderful and took really good care of me.
I came home on Thursday afternoon so that I could celebrate Mr G's birthday with him.
The permanent drain means that I can be drained at home. The district nurses call in twice a week to drain my tummy, but I can drain myself if I need to. This means that I should never be so uncomfortable again.
I have organised clinical waste collections from the house and an Occupational Therapy assessment is scheduled for early May to try to make showering a safer experience.
My next chemo is on Thursday 25 April. I really hope it knocks the cancer back quickly and hard.
By Tuesday 9 April, my abdomen was extremely swollen and I was in severe pain and discomfort. I first went to my GP for some stronger pain relief. He prescribed Oromorph (a liquid form of morphine) and rang my oncologist for advice. He had to leave a message, so I said I'd ring Lee, my Nurse Specialist, and see what she could do. Lee got back to me very quickly and I was admitted, yet again, to the Assessment Unit.
I was greeted like an old friend by Fanny, one of the nurses who had cared for me before, and she quickly settled me in.
A doctor was summoned and a decision made that a more permanent draining solution needed to be found. I was scheduled to have a permanent drain sited the next morning.
Tuesday night was one of the longest and most painful of my life. I could feel the pressure inside my body literally squeezing the life out of my internal organs. I was on Oromorph on demand, but the pain was such that I was prowling my room every hour or so.
One of the good things that came from this was that my morphine demand was calculated and I was given a slow release alternative in the form of Zomorph. This steadily releases the morphine over 12 hours.
The doctor who fitted the drain, under local anaesthetic on Wednesday morning, was wonderful. He took time to explain, to let me catch my breath, to use extra local anaesthetic and made what was deeply unpleasant, bearable.
Between Wednesday morning and Thursday lunchtime 9l of fluid was drained from my tummy. The relief was substantial, quite quickly. What a joy to be able to take a big breath again!
The nurses and HCA's on Maple Ward are absolutely wonderful and took really good care of me.
I came home on Thursday afternoon so that I could celebrate Mr G's birthday with him.
The permanent drain means that I can be drained at home. The district nurses call in twice a week to drain my tummy, but I can drain myself if I need to. This means that I should never be so uncomfortable again.
I have organised clinical waste collections from the house and an Occupational Therapy assessment is scheduled for early May to try to make showering a safer experience.
My next chemo is on Thursday 25 April. I really hope it knocks the cancer back quickly and hard.
Friday, 5 April 2013
What next..
As I write, the chemotherapy drug is hopefully zapping the active cancer cells on my peritoneum.
What I feel is the battleground of side effects and the myriad of drugs I need to deal with them.
I had a fabulous memory making weekend with my family. My littlest granddaughter overcame her shyness to throw herself into my arms and hold my hand. She allowed Grandad to help her on the soft play equipment right to the top! She and my grandson had a baby chat at my knee, neither using words but clearly exchanging meaning.
I bought eggs for an Easter Egg Hunt complete with special bags to put eggs in. My own children enjoyed that too.
I made cookies with my oldest granddaughter, we used pre-prepared mix so it was easy (for both of us). They were delicious.
We went to the zoo, it was freezing cold, but such fun. Seeing my granddaughters face to face with marmosets was priceless. I swear the marmosets were looking at my girls as hard as they were looking at them.
So, everyone went home. Mr G and I tidied up the escaped finger puppets and I surveyed the rest of my life.
How might it be? What will actually kill me?
Truth is no-one can say. So there is no point in speculating, frightening me and those I love, when no-one can say.
When I went for chemo yesterday, I had to be very brave. It was very difficult allowing the nurse to insert the cannula into my hand. This time the chemo drug is not labelled life saving but life extending.
Today, I went for a walk. I got out my Teeny Tiny Textile Art materials. I noticed the toilet needs cleaning!
In short, my life is going on. It is my efforts alone that will dictate if it is a life worth living.
I'll make it a life worth living. I am worth it!
What I feel is the battleground of side effects and the myriad of drugs I need to deal with them.
I had a fabulous memory making weekend with my family. My littlest granddaughter overcame her shyness to throw herself into my arms and hold my hand. She allowed Grandad to help her on the soft play equipment right to the top! She and my grandson had a baby chat at my knee, neither using words but clearly exchanging meaning.
I bought eggs for an Easter Egg Hunt complete with special bags to put eggs in. My own children enjoyed that too.
I made cookies with my oldest granddaughter, we used pre-prepared mix so it was easy (for both of us). They were delicious.
We went to the zoo, it was freezing cold, but such fun. Seeing my granddaughters face to face with marmosets was priceless. I swear the marmosets were looking at my girls as hard as they were looking at them.
So, everyone went home. Mr G and I tidied up the escaped finger puppets and I surveyed the rest of my life.
How might it be? What will actually kill me?
Truth is no-one can say. So there is no point in speculating, frightening me and those I love, when no-one can say.
When I went for chemo yesterday, I had to be very brave. It was very difficult allowing the nurse to insert the cannula into my hand. This time the chemo drug is not labelled life saving but life extending.
Today, I went for a walk. I got out my Teeny Tiny Textile Art materials. I noticed the toilet needs cleaning!
In short, my life is going on. It is my efforts alone that will dictate if it is a life worth living.
I'll make it a life worth living. I am worth it!
Wednesday, 3 April 2013
Not a bucket list...
This is a list of things I want to do when, and while, I am fit and able:
- Return to Jersey
- Take Mr G to Cornwall
- Have all my grandchildren remember me.
- Make sure I leave a good mark on the world
- Wiggle my toes in soft warm sand.
- Have as many barbecues as possible.
- Stroke a piglet.
- Make many more teeny tiny textile pictures.
- Read lots of books.
- Get better at Mario Kart on the Wii.
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