Wednesday, 24 July 2013

A difficult afternoon...

* Take care graphic descriptions

Mr G and I took ourselves off the a city today, to have a nice lunch and do a bit of shopping.
Lunch was delicious in the form of Eggs Florentine with a side of bacon, accompanied by a Pear and Mango smoothie. I was really hungry but greed over took a degree of sense and I ate too much. When I was well this would not have been too bad, a couple of indigestion tablets and all would have been well. My illness has put paid to such intemperate behaviour. The cancer makes my inside plumbing stiff and inflexible which causes problems getting food in and the waste out.

Before long I knew I would have to be sick - the loos in the city are far apart, but good old Mr G remembered a Radar key disabled toilet nearby. I fell through the door in gratitude and lost most of my lunch down the toilet! Once I had composed myself, we resumed our shopping

Mr G wanted to buy some trainers but the outdoor activity shop was not designed with wheelchairs in mind, so Mr G parked me up in a shady spot to watch the world go by. I was in a bit of a daydream when a kindly female face from the Indian Sub Continent handed me £2. I raised my hand in polite refusal, no, I was not begging here in that corner of the city. She looked aghast, not begging it seemed to her, if one was in a wheelchair, was as unthinkable as I felt it was to beg.

Once the surprise of that kind gesture had properly woken me up, and Mr G had retrieved me and heard my tale, it was obvious my body needed to get rid of some waste from the other end. This sometimes manifests itself as the 'go from constipation to diarrhoea in 10 seconds' rule.  This is, as you can imagine, fraught with danger.

Mr G immediately grasped the issue and set off at a pace, all through the shopping centre, up the lift to go past the bus station and down into the bowels of the car park and the blessed relief of the loos.
To cap my dreadful afternoon off, my blooming drains decided to have performance anxiety ... twenty minutes later I was eventually comfortable once more. The sheer terror of soiling myself, had, once again shown me the tyranny with which cancer rules my body.

What I have learned today:

Ask for a SMALL portion.

To be gracious even when rocked to your core.

Grown ups might feel safer carrying a changing bag!

Friday, 28 June 2013

Joy is ...

Spending time with my family.
Knowing I am loved.
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.
Sitting in the garden.
A compassionate heart.
Living with my soulmate.
Being alive.

Tuesday, 25 June 2013


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.

Sunday, 23 June 2013


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.

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.

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.

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...