Spending time with my family.
Knowing I am loved.
Skyping.
Making my Teeny Tiny Textile Art pictures.
Watching the birds from my sofa nest.
Listening to my favourite music.
Seeing my friends.
Reading books I want to read, both real and on my Nook.
Sleeping in my own bed.
Eating delicious food.
Days out.
Laughter.
Sharing.
Twitter.
Chocolate.
Sitting in the garden.
Writing.
A compassionate heart.
Living with my soulmate.
Being alive.
Friday, 28 June 2013
Tuesday, 25 June 2013
Frustration!
Frustration is:
Shaking so badly I cannot write.
Becoming breathless getting dressed.
Being unable to pick up the basket of wet washing.
Realising changing the bed is beyond me.
No longer being able to eat a three course meal - mostly one course is too much.
Having to accept a strict regime of medication.
That I cannot go out for the day without a wheelchair.
I can only do light cooking.
Housekeeping is limited to one task in a morning or afternoon.
Knowing I cannot offer to babysit my grandchildren as it is not safe.
I cannot go back to the profession I love.
Missing the people I used to work with, adults and children.
Knowing I cannot climb a hill or run down a slope.
Despite all this I am VERY glad I am still alive.
Shaking so badly I cannot write.
Becoming breathless getting dressed.
Being unable to pick up the basket of wet washing.
Realising changing the bed is beyond me.
No longer being able to eat a three course meal - mostly one course is too much.
Having to accept a strict regime of medication.
That I cannot go out for the day without a wheelchair.
I can only do light cooking.
Housekeeping is limited to one task in a morning or afternoon.
Knowing I cannot offer to babysit my grandchildren as it is not safe.
I cannot go back to the profession I love.
Missing the people I used to work with, adults and children.
Knowing I cannot climb a hill or run down a slope.
Despite all this I am VERY glad I am still alive.
Sunday, 23 June 2013
Relief...
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.
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.
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.
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