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.