Very tired - radiotherapy booked

I must admit I have been extremely tired over the weekend and am yet to make it out of the house at all. I certainly hope that this is going to happen and we did get a portable oxygen cylinder to use on my travels. In my absence Al's team lost 7-2 this morning (mind you it was 12-0 against this team time last time we played them).

Got a call on Friday to confirm that Radiotherapy, to try to ease the blockages in the lungs, is scheduled this week. On Tuesday and Wednesday I'll go for Verification and test visits to ensure they have the measurements set up properly. They cannot go via the same route due to previous damage that the original radiotherapy I received would have caused so they are going in via the sides - complete with 2 new tattoos! From Thursday onwards I'll receive 10-12 treatment doses on working days only. This could help relieve the symptoms over the next few weeks.

Home very Sweet Home

With Oxygen equipment installed at home this morning I have been allowed to return home - and boy is that a sweet feeling!!!

I must say I am feeling extremely positive this morning:

• We understand what is causing the breathlessness and are treating the issue.
• Whilst the Tumor has grown it has not grown that much and is not affecting the aorta or the heart, or the right lung tubes.
• The lymph nodes have not grown significantly
• No metastasized tumors are present.
• Radiotherapy could improve the breathing further.

The bottom line is that being out of breath is not going to kill me...it is more the psychological effects that I need to control - having the Oxygen equipment installed at home gives great comfort in that respect.

Mind you this is the ultimate roller coaster ride of all time - you never know what is coming next!!

Escape off (tunnel collapsed) - rescheduled for Thursday 25th Feb

The Engineer could not install the Oxygen equipment at home so need to stay in overnight.

Wednesday 23rd February - Hands up all those with 2 fully working lungs...."not so fast Mr. Seaton".

Had a CT scan today (Tuesday 23rd February). The results are enlightening. The Tumor has grown and has squeezed off the main tube to the lower part of the left lung - effectively collapsing the lung and making it unusable. It is also starting to affect the tube to the upper part of the left lung but this is still partially working. The result of this is the increasing breathlessness I have been seeing. The treatment is to undergo further radiotherapy - which needs to be very carefully targeted to ensure the damage caused by previous radio is not worsened.

The good news is the right lung tubes are not affected and neither the Aorta nor heart are being infiltrated. The tumor has grown since June 2009 but not significantly and the affected lymph nodes have not grown much. Importantly there is no spread to the lungs etc.

Assuming that Oxygen can be installed at home tomorrow then I will be able to go home.

Overnight breathing problems - admitted to Derby Royal Sunday lunchtime

I woke up early Sunday morning (around 1am) on the couch downstairs where I had been sleeping. I was extremely out of breath and very confused and incoherent.

Julia managed to calm me down and I was not to bad for the rest of the night but in light of the issues related to a high calcium level we called the hospital Sunday morning and decided I would be admitted after lunch on Sunday.

They started me on IV fluids for the confusion/calcium and began investigations for the continually worsening breathing problems - a 20 foot walk to the bathroom had become a chore!!!

Was in a side room for the whole stay this time and once more received excellent care from all involved.

Calcium back to normal!!

Had a call from the doctor this afternoon to confirm that the blood test I had yesterday has shown the calcium levels reducing to pretty much a normal value - good news! We will of course continue to monitor and check this remains the same.

Unfortunately no real difference on the breathlessness/wheezing front. I still need multiple ventolin puffs to walk 20 yards and heading upstairs needs to be carefully planned out in advance. Will complete the antibiotics this week and review options again when we see the Doc next Thursday.

*** STOP PRESS ***
Posh just beat Ipswich 3-1!! 4th win in 32 games!!!!

A road well travelled

During my various recent blood tests and meetings with doctors it has become apparent that yet another issue I have is a raised blood calcium level - without treatment this leads to confusion, unconsciousness and coma (might have been hard to spot over Christmas!!). Naturally we are doing our best to find out the cause and treat.

However whilst researching the effects and treatment for high calcuim I have come to realise that all of the symptoms affecting me at the moment are pretty par for the course for end-stage terminal cancer patients - some more than others but nothing too out of the ordinary. I actually feel pretty fortunate at the moment; my pain is under pretty good control; eating is not bad; I am able to remain at home rather than hospital/hospice. This still allows me to enjoy the remaining time I have with reasonable physical condition (until the next big thing!!). The flip side of this is the emotional side of the process is highly elevated at the moment.

Julia's last day of work

Today is Julia's last day delivering the school meals for the local schools - with my increased trips to the doctors/hospital recently the commitment to be near home over lunch has become increasingly inconvinient.

We met with Dr. Swanwick yesterday (the Palliative care consultant). Whilst I have not had a repeat of the really scary asthma attacks we have also not seen a huge improvement in the out of breath and wheezing situation which I was taking steriods to try to fix. The chest X-ray I had last week did show an area of the lungs that might be infected - but when Dr. Swanwick listened it seemed completely clear. She has given me a course of Antibiotics to see if that helps. However it is becoming increasingly likely that the cancer is affecting the lungs and this may just be something I have to live with.

We went to Thomas' parents evening on Tuesday and had some very encouraging feedback. He is also at the stage where he is chosing his options for GSCE etc....how old does that make me feel! His school offers a diploma in Creative and iMedia which sounds fantastic.

We received Alex's report last week and this week got a follow up letter from his head of year confirming his report was among the best in the school......just about the proudest Dad in the world!!!

Alex's football team finally got another win on Sunday 2-1! Go Tansley!

Something new....and not entirely pleasant!!

Well another week and another fresh twist on the rollercoaster. Since the weekend the minor cough and wheeze has worsened. On Tuesday I had what is the closest I've ever been to a full on Asthma attack - just through the minor exertion of coughing. I have had very mild Asthma (nothing much more than a winter wheeze) most of my adult life - but nothing ever close to what I expericenced Tuesday morning. Panic nearly took over, making efforts to get the inhaler fire into my lungs even tougher. I must say I have great respect and a better insight to people who get serious asthma and for whom such attacks may be pretty common. It was a genuinely scary experience.

I went straight to the GP Tuesday morning and although my lungs sounded clear he did give me a controlled release inhaler to go with my (blue) acute one.

Was ok for the rest of Tuesday and Wednesday, but had another attack Thursday morning as a result of the strenuous exercise of taking a shower!

Luckily Thursday morning was my scheduled appointment to see Dr. Swanwick the NHS Palliative Care consultant from Derby Royal. It is fair to say that Dr Swanwick was superb. This is an NHS clinic but my appointment lasted more than 45 mins, during which time she took a detailled history, examined me, set up a Chest X-ray and appointment next week. She also prescribed; a higher dose of the Morphine Sulphate pain relief tablets; Steriods to try to get rid of the Wheezing and breathing problems; and a different laxative to try to help elsewhere!!!
Dr. Swanwick is a great example of where the NHS is still a service to be proud of.

I am due back to see Dr. Swanwick next Thursday and sincerely hope the Steriods do the trick by then.

It seems to be one step forward, one step back - with any improvements on the energy levels from a better appetite being overtaken by a need to move slowly to prevent the breathing problems - however I like to think I have not been quite so downhearted and grumpy (although perhaps you should ask Julia!!!).

We have a small number of things planned for the weekend and early next week....it of course remains to be seen whether I manage to do them.

Have a great weekend everyone!!

Slow steady improvement

I'm pleased to report that although rather slower than I'd like I have been feeling steadily better over the last week or so. My appetite is still improving - although for once in my life I am having trouble putting weight on! The back pain is pretty much under control and I have even been coughing a lot less.

Normal (ish) family life has broken out! Alex has started going to badminton club with Thomas on Tuesday's and has re-started indoor cricket nets on Thursdays in preparation for the new season. As a treat we allowed Alex to get a new Cricket bat (whilst Tom had an Ipod Touch). Alex steadfastly refused to buy any of the bats in the extensive sale range and purchased a Newbery Grizzly! I would have killed for such a bat when I was his age.

Ian and Elizabeth came up from Kent to visit on Saturday. It was great to see you guys and I hope you had a good stopover on Saturday evening and car viewing on the Sunday.

Alex's football was postponed on Sunday morning because of a frozen pitch.

Robert and Julie came around Sunday afternoon with their new car - very nice it is too, and we went to Jeff and Paulines for Sunday tea.

So I guess all in all the boring ramblings are back....although to be honest I hope they continue for a long time to come!!

*** STOP PRESS ****
Peterborough have just sacked their "new" manager after 1 win in 13 games! Turning out to be a total nightmare season.

5 days in a row!

Have now been out of the house for 5 days in a row....a new world record.

We picked the car up yesterday and it is fantastic!

Julia and I went out for lunch today with John Fryatt who is in the UK for a short visit.

I have a GP appointment tomorrow so this going out business may just become the normal state of affairs!!

Pain mostly gone....appetite coming back!

What a difference a few days makes. The new painkillers are doing a great job in, well killing the pain!!! I have realised that for the last 2 months at best the drugs had been taking the edge of the pain - the current drugs and dosage actually makes the pain go away!
I have also stopped vomitting and can actually feel some of my appetite returning!

We went out for a Chinese meal on Saturday evening, watched Al's team play footabll on Sunday (they lost a close game 2-1) and I drove over to Jeff and Paulines for a coffee this morning....meaning I've left the house for 3 days in a row - a record for the last fews months!

Whilst I still feel far from packed with energy - and the painkillers do make me drowsy - I am feeling pretty positive at the moment....long may that last.

We pick up the new car tomorrow - I know Julia is looking forward to this very much.

Progress on the drugs....still waiting for the car!

Finally some significant progress with getting the drugs sorted. Been taking Morphine Sulphate solution this week and settled on a specific dose to take the pain away. Spoke to the GP this morning and have used this dose to prescribe slow release tablets that will allow for the correct level to be delivered via 12 hourly tablets. Amusingly enough the tablets of choice are MST 100 tables produced by NAPP and tested by me in my first job out of Uni (although hopefully not this batch!).

Had a bit of a nightmare with the car. Julia spoke to the garage and thought she agreed to pick up on Tuesday - only to find the guy was agreeing we could look at the car on Tuesday. This would not have been a real problem had we not already arranged to cancel the insurance on the Megane after the Tuesday. Subsequently we have had to take out a short-term policy to cover the time before we eventually pick the motor up next Tuesday.

I have to admit that I have not actually made it out of the house for more than a week now - I can see how incredibily easy it is for people to become institutionalised. Since I still have absolutely no appetite (or desire to eat any food) it is a very slow process to rebuild my energy levels. Will definately make more effort to get out this next week. Hopefully Alex will have a match survive the weather on Sunday this week.

Better drugs.....new car!

Been to seen the oncologist today. Progress is slow in terms of recovery and the back pain remains pretty constant. Dr Elvis prescribed me some Morphine Sulphate solution which should improve the situation. He is also going to refer me to an NHS Palliative Care Consultant to begin to take over my care moving forward. To be honest this is a bit of a relief because we are wary of falling in between the Private medical cover (which does not provide Palliative care!) and the NHS - this will remove all issues related to that and allow a more all-in approach to future care - especially pain relief which has been a bit hit and miss.

We've been checking out new cars in the last few weeks (since I am effectively not driving at the moment and both cars need services/tax). Today Julia has been in and test driven and ordered a brand new Peugeot 4007 (their Sports Utility vehicle 4x4 thingy). Whilst Peugeot would not be my preferred manufacturer the car is extremely well equipped, gets pretty good reviews and was at an amazing price! Especially given they have part exchanged both of our existing cars at pretty good rates. I was stunned to see the deal they did....times must be hard for car dealers!! (Shame!). Should be here at the weekend or early next week. I think this is the first new car that Julia has ever chosen herself!

Jo and Pradeep dropped in yesterday during their UK travels....great to see you guys!

Still snowing!

Improvement is slow but I think I am starting to feel slightly better as time goes by. Definately have good and bad days, and still along way from feeling good but moving forward is good!

Unlike the summer it has not really been much of a challenge to remain housebound over the last couple of weeks since the weather has been extremely bad. The road outside the house is white-over again and could be challenging for our plans to go ten-pin bowling today. School was shut for Tuesday and Wednesday this week and an interesting drive for Julia when it was open on Thursday and Friday.

Vombieville

Sorry for the lack of posts but to be honest I've hardly moved off the sofa (other than to go to bed) for the last couple of weeks.

Physically my eating is much better (i.e. I can eat a range of soft foods without problem) however I have very little appetite and eating anything seems a chore (I call it the Zombie-plan diet!). So this is not really helping in building my energy levels back up again.

Improvements seem extremely slow and as I feared I was not up to attending Diane's wedding or the Peterborough game against Spurs - althougth the boys did go with Grandad! (Posh lost 4-0 for those who are interested).

I spoke to the GP last week and got some different pain killers for my back pain - which has now settled in my right shoulder-blade - I suspect these are helping with the Zombification process - although strangely enough they don't help much with the painkilling. I will speak to the Doc again this week.

Many thanks for all your messages and thoughts - sorry I'm not very good at responding.....even the iPhone doesn't have an app for unconsious email delivery!

Happy New Year to you all!