The old fishermans latest report on the health front!

Now the Royal Marsden Hospital have advised that the chemo is not working and they can do no more for me, the challenge is to control the pain so that I get some quality of life during my remaining months.  This is a lot easier said than done.  Fortunately this is where the St Christopher's Hospice get more involved. Last week I was not well enough to go to my regular meeting at the hospice to review my pain control, having vomited three times the night before and still feeling rough.  The hospice kindly arranged for a male nurse to visit me at home the next day.  His name was Matt Loveridge and he was excellent.  He reviewed what was happening to me, how I felt and what drugs I was on and then he made a number of recommendations which he wrote out in beautiful script and gave to me.  I know a lot of my readers have a medical background so here is the detail:-

For pain relief - increase the OxyContin tablets to 40mg twice a day.  Continue to take the OxyNorm liquid,10 to 15ml when required.  Take Nortriptyline at 20mg in the evening.

To control sickness - take Domperidone 10mg 3 times a day before meals.

To relieve constipation - take 2 Laxido sachets in 250ml of water each day.

I also take two 500mg paracetamol tablets four times a day at four hourly intervals.

Fortunately now I am off the chemotherapy I don't have to take all the pills associated with that (what a relief!).

However I am starting to wish I had shares in pharmaceutical companies!

Two of the things the medics ask that I have difficulty in answering relates to the pain. They ask where does it hurt and how bad does it hurt? The where is the easiest to explain except that the pain is internal and varies with movement and breathing. Basically my whole right lung aches most of the time even when I am under the pain control medication. It used to only ache low down but has progressively moved up.  When the pain control pills have worn off then the pain is a serious distraction and I have to try and do something about it. On a scale of 1 to 5 where 1 is no pain and 5 is excruciating pain I feel I regularly score a 3.5 and sometimes even a 4! This is when I use the OxyNorm liquid and the heat bag!  The heat bag was made by my daughter-in-law Debbie and it contains wheat, I think, anyway put it in the microwave for 90 seconds and it stays warm for a couple of hours.  I then place it on my shoulder and neck and the feeling of heat tends to mask some of the pain.

On the good news front Rosalind and I have met with the funeral director and I have decided where I want to be buried. The cemetery is called Greenlawns Memorial Park and it is high on the North Downs about 3 miles south of where we live, well away from traffic and heavily populated locations. Hopefully I will be able to "rest in peace!"  Only flat (horizontal) head stones are allowed making for a vary open and airy scene.  I bet it makes cutting the grass easier too!

For whom the bell tolls, know this it tolls for thee!

This is not mine, but it is what it feels like to me!

Went with my daughter Rachel to the Royal Marsden Hospital to get the result of my latest CT scan. I was pleased when I realised I was going to see the top lady consultant, Dr Mary O'Bryan, rather than one of her support team. I thanked her for delaying my chemo so I could attend the family holiday. She kindly let me show her pictures of the family on holiday at Center Parcs and then she got down to business. She said that the CT scans showed that the chemotherapy was not stopping the cancer from spreading and sadly there was nothing more that the Marsden could do for me. 




Wow, there is nothing quite like calling a spade a spade! 




On reflection I was not all that surprised at the scan results, as I had felt pain-wise there was a deterioration, but I did think there might have been a plan B! Dr O'Bryan made it quite clear that there wasn't a plan B that involved treatment at the Marsden and that I should look to support from the Hospice for pain control etc.  Both Rachel and I were a bit upset at this news as there didn't seem to be any room to manoeuvre and we appreciated Karen, the specialist nurse, who popped in to see us and offer her condolences.




Rachel agreed to phone round her siblings with the news but later that day I called them as just speaking to them cheers me up. The following morning I Face Timed with Dan and Holly in the States. If I call them at 09.00 it is 01.00 their time and they are usually up! Dan really cheered me up. He told me about a colleague who's wife was ill with lots of pain until she discovered the medicinal use of marijuana! Apparently it's legal in WA. I was wondering if I could get the doc to prescribe it for me, that and a Jimmy Hendrix CD. 




Then Dan said that an advantage of knowing that your death is fairly imminent is that using modern technology you could arrange to speak at your own funeral! I must say that might appeal to me. Maybe I could even sing and play the guitar? No on second thoughts knowing my ability I think that might be pushing it a bit too far!




On the positive side I am getting slightly better at managing the pain some of the time. People calling, e mailing and visiting help a lot, not only is it nice to have contact and hear their news it also distracts me from thinking about myself. When my neighbour Rick drops in we end up laughing our socks off and a few days ago an old friend Beverley came right out of the blue and brightened up my day.




I enjoyed watching the last night of the BBC Proms Saturday night and I said to Rosalind that this is probably the last time I shall be able to watch it!  A sobering thought!




Thanks for visiting the blog and reading the posts, I am amazed at how much it gets viewed all over the world. I really appreciate the kind comments and it reminds me that I have so many good friends. I truly am blessed.

Some thoughts on being poorly, wonderful friends and an angelic visitor.

During my life I have never been very good at responding to the news that a family member or friend is seriously ill. Part of that is because I grew up in a culture where a persons serious illness was almost put under wraps or discussed in an oblique way. I remember my father being ill most of his life and not really being aware of what was wrong with him. People would even talk about "the big C" rather than mentioning cancer!

Since contracting the "the big C" myself my attitude has changed completely. I really appreciate family, friends and neighbours who engage with me, send cards, phone, e mail or visit. I have had wonderfully uplifting contacts and often forget my pain and problems when someone contacts or visits me. Some times I am so touched by what people say that I have a little cry. Please accept a "big thank you" to all of you, you mean so much to me.




My good "Fishy Mormon" friend Ian Govier sent me this tee shirt, what a treat!





I also appreciate the care I receive from the nurses and doctors. Their support is tremendous and the NHS system seems to function well. Worth special mention is my district nurse Helen who visits me at home to check on my external plumbing (catheter). She is like an angel! 

So my attitude has changed and I regret the times when I did not engage more effectively with family and friends who are poorly or who have suffered a loss.




I am writing most of this in the Marsden having my second bout of chemo. I have been transferred to the private out patients ward because the NHS outpatients ward is short of staff! There is not much difference, it's just a bit plusher and the staff just as nice. Apparently I have to have 9 chemo sessions 3 weeks apart so I am going to get plenty of time to post on the blog.

Royal Marsden Magic!

Being told you are being referred to the Royal Marsden Hospital is a mixed message, it has a reputation as one of the best cancer hospitals in the world but then do you really want to be at even the best?

The lovely people were expecting me (which always helps).  My folder of notes was ready and I was taken for all the usual basic health checks. When it was confirmed that I was still alive a lovely key worker nurse called Karon came to see us to explain that her role was to support us and answer questions etc. Then we met Doctor Raj Kumar who helpfully explained:-

A) why I was there

B) what they were going to do

When I asked him for an indication of how roughly long I could expect to live he said "oh you want to talk numbers do you?" I said yes please? He said "if the chemo goes well on average we would expect around 2 years." He then asked if I would be happy to assist with some research that involved MRI scans. I said I had suddenly developed an overpowering desire to help with medical research!




Doctor Kumar's boss, Mary O' Brien, came to visit and was very kind and helpful, she modified Dr Kumar's prescribed chemo as she noted I had been losing weight and it was agreed that I would go on two chemo treatments Pemetrexed and Carboplatin. I was to be given the chemo at 3 weekly intervals over a 9 week period (I think).

Then I met the amazing head radiologist (she was so enthusiastic and happy I missed getting her name) who was excited that I had volunteered to do the MRI experiment! She explained that I would have 3 scans, one before chemo, one halfway through and one on conclusion of the chemo. This would enable them to see if the chemo was effective or not. 




I was asked to keep track of my use of morphine and given pills to take before kicking off with chemo. I came away feeling I was in good hands with very kind and professional friends.




My next post will be all about the amazing experience of having an MRI scan!!!!