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.
Tuesday, 7 May 2013
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.
Tuesday, 2 April 2013
Waiting...
I really have not had long to wait for my treatment.
Two weeks, is all.
The terrifying part is the speed with which my cancer is fastening its hold on me.
In just two weeks, I've had 10l of fluid drained from my abdomen. The cancer has already thickened my peritoneum to the extent that the latest draining was excruciating.
They had to restrain me to get the drain in.
I needed morphine to tolerate the drain.
I had so much gas and air for the removal of the drain, that I was as high as a kite, and yet I still screamed.
It is safe to say that I will not be allowing any invasive procedures on my body, other than chemo, for a good long while. That being the case, I declined my doctor's request to have an endoscopy to find the cause of the blood I am regurgitating. I have doubled another drug which will deal with the symptoms.
My GP stated that he would be sensitive about hospital admissions. What a lovely man.
So, I sit here, looking 8 months pregnant, with an abdomen as tight as a drum. I'm taking strong painkillers and drugs to suppress cold sweats which drench me regardless of the temperature. I can eat tiny amounts at one time as there is no room in my stomach for more than a teacupful at a time. The fluid that is filling my abdomen is coming from the protein bit of my blood that builds my body so I am getting a little weaker. I seem to crave salty and savoury foods so I am indulging in them.
Looks like my Easter eggs are safe for a while yet.
Chemo starts on Thursday. Then I can start teaching those cancer cells what for.
I'm not writing this to get sympathy. I've had and got plenty...
I'm not writing to shock or revolt. This is how it is...
I'm writing this as part of my life...
This is my story.
One day, a long time from now, I truly hope - it will be my history.
Two weeks, is all.
The terrifying part is the speed with which my cancer is fastening its hold on me.
In just two weeks, I've had 10l of fluid drained from my abdomen. The cancer has already thickened my peritoneum to the extent that the latest draining was excruciating.
They had to restrain me to get the drain in.
I needed morphine to tolerate the drain.
I had so much gas and air for the removal of the drain, that I was as high as a kite, and yet I still screamed.
It is safe to say that I will not be allowing any invasive procedures on my body, other than chemo, for a good long while. That being the case, I declined my doctor's request to have an endoscopy to find the cause of the blood I am regurgitating. I have doubled another drug which will deal with the symptoms.
My GP stated that he would be sensitive about hospital admissions. What a lovely man.
So, I sit here, looking 8 months pregnant, with an abdomen as tight as a drum. I'm taking strong painkillers and drugs to suppress cold sweats which drench me regardless of the temperature. I can eat tiny amounts at one time as there is no room in my stomach for more than a teacupful at a time. The fluid that is filling my abdomen is coming from the protein bit of my blood that builds my body so I am getting a little weaker. I seem to crave salty and savoury foods so I am indulging in them.
Looks like my Easter eggs are safe for a while yet.
Chemo starts on Thursday. Then I can start teaching those cancer cells what for.
I'm not writing this to get sympathy. I've had and got plenty...
I'm not writing to shock or revolt. This is how it is...
I'm writing this as part of my life...
This is my story.
One day, a long time from now, I truly hope - it will be my history.
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