NHS vs Private, yet again

The fact that the second chemo cycle wouldn't have started until the the arm was healed properly and the clips (40 odd I think) are taken out means that we have had to slightly change the rest of the programme but as of now the pre chemo blood test is set for 11th April, and the 2nd chemo cycle is 13th.

The orthopaedic guy asked my GP to arrange a nurse appointment to remove the clips; 2 weeks after the op would have taken us to Thursday 5th April, a week before the chemo restarted, so I called the GP, they had the letter, and promptly told me they didn't have a single nurse appointment for at least 2 weeks from now. What a waste of time!

I called the Spencer wing. They said "What date is 2 weeks after the op?" "5th April" I said. "11 o'clock on the 5th then". Sorted . That is the difference between NHS and private. Now I would never say that the NHS shouldn't be there because as a system it is fantastic, but its unfortunate that over the years it's become such a lumbering great beast that nowadays its often difficult to serve the needs of the patients effectively due to lack of resource, top heavy bureaucracy and systems that often don't work correctly or fail on a regular basis. A good friend of ours who has worked most   of her life as a health professional told us the other day that for "major" illness such as stroke and cancer the overall care given by the NHS is hardly different to that of private medicine but for things like the pinning procedure I have just had there is a massive difference, and I am happy to have the option of the choice between one and the other. My eternal thanks again to Addison Lee for providing the BUPA cover as part of my employment and for their continued support.

An Interesting Discovery

Jen and I have always been avid researchers in respect of things we find interesting or which we need to know. When she had her stroke we learned a lot from the net about the causes, effects, symptoms and treatment pertaining to stroke and that enabled us to help her on her route back to normality over the several years since 2005.

One of the main things which has cropped up since the cancer diagnosis is this "low level" stuff: potassium and cortisol especially. Those who have worked with me over the years will attest to the amount of coffee I used to drink when at work. While I mostly drank tea at home my drink of choice at work was always coffee. Because I have been at home since the diagnosis for some reason I have virtually stopped drinking coffee, preferring tea as that's what Jen drinks during the day. I probably haven't drunk more than a dozen cups of coffee since February, which for me is unbelievable, as I would probably have drunk a dozen cups a day while at work. 

Some of the more noted effects of low cortisol is aching all over the body, low back pain, shaky hands, and various other effects that I can relate to. Another factor is sleep: sleep itself increases cortisol levels, but I am presently not sleeping well: two hours at most then wake for a while then doze again, but through the night my sleep is very interrupted.

There are some natural herbal remedies which one can take to help but while I am on the chemotherapy I am advised it's not a good idea to take too many other things which may suppress the effects of the chemo drugs (they have already told me to stop taking my daily cod liver oil, which of course helps joints, and co-enzyme Q10 which I was taking to counteract the muscle and joint ache effects of the statins prescribed for cholesterol. In fact for the moment I have chosen to not take the statins as my cholesterol is not raised to any extent anyway.

So I am going to try going back to drinking coffee during the day, to see whether there's any improvement. For those interested there's an article link below that also suggests other things which are good to help cortisol: grapefruit, and licorice neither of which I like! So for now lets see if returning to coffee drinking will help the aching muscles a bit.

Read the article here

Highs and Lows and God Knows What

Do you ever get that feeling the moment you meet someone that you think to yourself "I like this person"? We all make those first impression judgements often without realising we have. After the stress of the last couple of days it was important that the treatment plan and all the associated components that are part of that were rounded up and put in their respective places. Our meeting with the oncology consultant Mr Raman was that opportunity as well as my chance to be more involved at the business end as it were.

So off we went to Canterbury for the appointment at just after midday. Because of the ever present parking problems at these hospitals we had left in pretty good time but if you have ever driven into Canterbury on any weekday the traffic can be horrendous, and it was. Our appointment loomed 10 minutes away as we arrived at the hospital, and the oncology department is accessed from the main hospital entrance: most of the parking here is staff etc. but there are half a dozen disabled bays. Previously we have never been able to get one of these which means dropping Jen at the doors and finding a space in a public car park, the closest of which is about 5 minutes walk away. I drove to the main doors and wonder of wonders! there was a disabled bay free. No stress!

We parked, and unlike other parts of the hospital where we have been before it's a short walk inside to oncology. Five minutes wait and we are called in to see Raman, and I got that instant "I like you" thing (previously we saw one of his staff not him so until today we hadn't actually met him) going on.

We reviewed the operation, agreed that the next chemo cycle would commence 16th April, giving time to remove the staples from the arm (should be done next week at GP's) and because I have low cortisol that's been flagged up in (yet!) another blood test result we are going to arrange what is known as a Synachten test [click to read more] to establish what may be going on.  

All these lows and highs and god knows what's may well be caused by the fact that the original cancer has gone secondary into this neuro endocrine thing. Now, endocrine in medical terminology relates to hormones and stuff, and it's possible that the cancer is either producing it's own hormones or affecting production of mine. So until the chemo gets working over the next few cycles we wont know for sure but hopefully as the cancer gets beaten up by the chemo this might settle itself a bit. On that score time will tell.

So mr Raman has left me to arrange the synachten test which I will do and to ensure the staples get taken out of the arm so its nice to feel more involved. He did assure me that he was keeping an eye and in touch with the consultant for the arm operation, but having met him I feel much more relaxed and confident that there is a person in charge now who I am very comfortable with.

I have been getting very sore joints of late too, and Raman confirmed that was either the chemo or the low cortisol (could be one or both) but it's good to know there is a cause that we can identify and it's not something new that we don't know anything about.

Continuing the non-stressed thread of the hospital visit right opposite the door to the oncology department is the hospital restaurant for staff and patients and we stepped in there and had a very good lunch at a very reasonable price which rounded off the visit very well.

A New Look

Took a trip to see my mate Steve the barber this morning. Since last weekend, as you know, my hair has been coming out. Now I have always been a bit vain about my hair: it always had to be "just right" and since it went silver I have been especially proud of it. However, there was no way I was walking round with lumps of it falling out so off I trotted to Steve, who said that the best option was grade 1 all over, and that will fix it for the duration of the chemo.

For posterity then, here's the "new" me

Gotta keep smiling!

Spanner in the Works

Seems like everything is conspiring to put obstacles in the way. Furthermore it also seems that the person who should know that there is a spanner, that person being me, doesn't get told. So having got myself prepared for the second chemo cycle tomorrow the fact that I had had an operation last week leaving me with staples and stuff in my arm that won't get removed until next week sometime means no chemo because of the risk of infection while the operation wounds heal.

This of course is an eminently sensible course of action except that nobody actually thought to point it out to me, and as they say on the Simpsons: DOH

Just means that I now have to wait probably till 16th April for my next chemo dose. What really annoys me is the fact that everyone knows this is a sensible option, and everyone agrees that what should happen, but nobody thought to tell the most important person (in my opinion at least!) in all this which is me. Now when I heard this to say I was a little pissed is an understatement and this has now made me decide that as of now, anything to do with this treatment absolutely MUST come through both me and the oncology consultant. The management of the treatment should, in my view involve the patient, should it not? As of now if they don't consult with ME they will be in big trouble.

I have always been someone who likes to be in control and I think the last week , with the op on the arm and stuff I had kind of lost the control of the cancer stuff but this will put me back in control, which is a far better situation. We have a meeting with the oncology consultant on Thursday so we will set this all out then and ensure that everyone involved knows what is required.

Make over time

Today, literally, my hair started falling out. I have always been very proud of my hair and much as I do NOT want to lose it, I must accept this is going to happen and I don't want to walk around with lumps out my plan is that I go see my mate Steve the barber next week, get the hair cut down to a number 1 so at least I have control of it.

Will add a picture once done. Lets hope I don't look too much of a thug!

Day 3

When I awoke on Friday after a few hours it was still early and as I gathered my wits the immediate reaction is to feel the arm: Mr Smith had said there would be no bolts outside the skin: as my had hit the top of my right arm i could feel this inanimate lump "shit, there's a bloody great bold there" I thought. The arm was bandaged so i couldn't see anything, and at that moment the day staff nurse Sue came in. "There's a bloody bolt there" I said. "No there isn't, that's your arm but you can't feel it because of the nerve block!"

I suddenly remembered the last words the anaesthetist had said: he was going to give me a nerve block injection to numb the whole arm to stop the pain, and that's what it was, my arm but totally numb. The blocks last anything up to 12 or so hours.

Visits then ensued from the orthopaedic consultant who gave the all clear to go home, the anaesthetist did the same and the only concern is keeping the potassium up. Mr Smith has called in a physician and he is on the case: we see him Monday and he will sort that we hope, through changing my diuretics etc.

We will also start second cycle of chemo next week and have a review with the oncology team. One down, five to go!