Part of the wait is over

While I redesign my blog in preparation for take 2 of my treatment I thought I would update any reader to what is happening.

One evening I got home to be told by my father that I had received a couple of phone calls but he could not understand the person who called so said I would not be home until after 6:00pm.

The next day I got a phone call while I was at work and found that the person trying to contact me had been the HepC specialist nurse who was trying to arrange an appointment to review my understanding of what was to come as we had already gone through the normal introductions to the treatment the last time I tried to have treatment before my tumours appeared and stopped everything for nearly 18 months.

I have been approached by the British Liver Trust to review there new leaflet on Liver Cancer and as a patient now in remission I felt I could be of use. As a guide it is pretty good although they should mention in the treatment section that variations of the different treatments could be tried to help increase the life expectancies of those diagnosed with Liver Cancer.

Now I have been told that I am currently in remission and can start treatment I hope that the consultants etc keep an eye on my AFP levels and CT scans for any sign of new tumours appearing and I really hope they stay away until I have completed treatment.

Generally my mood is good mainly because some of the helpful if somewhat strange conversations I read and sometimes contribute to on the HepC forum.

Forever Waiting

As the weather changes to that of winter rain etc and the dark mornings arrive my depression levels are starting to climb (or should I say plummet).

It does not help matters that I am still waiting to hear from the Hepatic nurse specialist at King for my initial assesment of suitability for treatment.

At this rate I will have a new tumour appear and the whole vicious cycle will start again.

Changes or planned changes at work are not helping at all. We have just found out the company I am currently employed by has lost the contract with the people we currently support so come January we will have to get used to new management and there way of doing things.

The uncertainty of my current employment and the long wait for a slot to open up for treatment is giving me indigestion as well as depression.

Slacker

I have been a touch remiss in keeping my BLOG up to date just recently.

Update.

Visited the Liver Unit at King's on the tuesday following the August Bank holiday and received some great news. My liver has recovered so well following on from the Liver Cancer treatment that I am no longer at risk of requiring a transplant and because everything is going so well they have decided that I can restart treatment a year earlier than estimated.

Two days later I ended up in my local hospital suffering from an upper GI bleed again. The local consultant I deal with is going to write to King's letting them know what happened and what treatment they have carried out. I just hope this does not stop the HCV anti-viral treatment again.

Recovering from my first Week back at Work

I have just about survived my first week back at work.

The mornings are not so bad it is the afternoon that gets me and unless I have some activity to keep my brain active all I want to do is sleep.

The heat this week did not help matters and finding out about changes to working practice while I was on holiday and not being briefed on them made me angry and this led to a little depression.

Next week will see me attending the CT clinic for my 3rd of 8 scans and that should be fun as it is quite a late appointment so there is every chance emergency scans will need to be done delaying my appointment. If it did not cost me so much to travel before 09:00 I would happily plumb for a morning appointment but I just could not afford it every time. Still getting home should be fun.

Back to work??

Well that's my holiday over and done with and it's back to work for me. Within two days I have gone from feeling really good to tired listless and sick again.

The only good thing is the lovely weather we are having at the moment is lifting my spirit a little.

This time next week I will be on a train for the trip to London as my CT scan appointment is not until 16:15. It will be fun trying to get home afterwards but what I will probably do is find somewhere near to Victoria to have something to eat and catch a train some time around 19:00 when the rush should be over.

I do not care what my boss or customers think next tuesday will see me dress down ready for my trip in the afternoon.

Phones have started going daft again so I suppose I had better get back to work....

Another Day

Yet another day in my life has gone away and for once I feel good about it.

Yesterday I joined the Hep C forum found via other blog's on this site. I no longer feel quite so lonely and isolated.

I have come to the conclusion that there is no support group in our area so I think I had better do some research into starting one up as I now know that there are one or two people in this area with the same or similar challenges as myself. I may just use the forum to sound out this idea to others in the area and while I am feeling good use the opportunity to think about starting a group myself.

Working within Eastbourne Borough Council should give me the opportunity to look out some sort of meeting room for meetings etc hopefully at a good price.

If I could find somewhere centrally then it will be easy for people to find and get to like the Town Hall where it is possible to park in the evenings and is close to train and bus transport. Hmmmm just a thought that will need looking into when I return to work next week.

A Very Hot July

Well it has been the hottest July for many years and boy I am glad to say that I am feeling well.

My last CT scan did not show any scaring from the HCC and my liver function has improved by almost 10% from before I was diagnosed with HCC.

I still suffer from depressed moments every now and then especially when I have people say how well I look and I must be getting better only to tell them that I still have a long road to travel before I can honestly say I am better.

Trying to explain that HCV lives in your blood quietly destroying you slowly but surely can be a real pain sometimes so I have made up a pack of literature taken from the web and other sources so when I have someone look at me with some disbelieve I can just allow them to read this and get a better understanding of what I am going through.

The X-Ray department and Kings College Hospital is arguing with the Liver Department at the moment because they want to reduce the number of scans I am having from quarterly to half yearly. The Liver dept wants to keep it at quarterly so if there is even a slightest chance of HCC returning then they want to know about it.

Currently I am on Holiday or at least the last few days of my two week holiday and in this time I have attended the funeral for one of my relatives and attended the Graduation of my niece. Most of the plans I had like sorting out my Home Office and redecorating it has gone west because it has been so warm this has sapped what little energy I had from the rest. Still it is better than last year when I kept on having time off work because of treatment which did leave me drained of all energy.

Well I will leave this for now and return when I have something to say.