Nearly Ugless

This last week has not been so good in so much as my computer decided to crash on Tuesday and the engineer couldn't come out until Friday, I felt totally at a loss as I use my computer every day. Anyway, as you can see, it's back and working fine - phew!

I also managed to pick up an infection which knocked me for six this week and resulted in the glands in the back of my neck and head swelling so that they were like enormous gobstoppers. They were very sore and I couldn't rest my head flat back on a pillow so sleeping and resting was difficult, however, that has also now subsided thanks to antibiotics which were very large and bright orange - I had to read to instructions twice but yes, I did swallow them!

On Monday I saw my radiotherapy consultant who had the results of my CT and MRI scans done the previous Thursday. They were extremely pleased and UG seems to have responded well to the treatment, having shrunk by 30% which was great news. They were also delighted in that it seems to have pulled away from where it was embedded which makes the surgery less invasive, so good news all round and made me forget the lumps in my head for a little while.

Tuesday I saw my surgeon who was also delighted with the scan results and is convinced he can get UG out 'in one' and since I don't have any secondary tumours, it looks as though once UGless, that will be it. Thank the Lord for that.

The rest of the week was spent resting and trying to get on top of the infection so that I would feel better when I go into hospital on Monday morning. I will spend most of Monday having various blood tests etc and am then first on the list for Tuesday morning which means I will be going down at about 8.30am. The operation is scheduled to last about 5 hours which is very scary and I then have to go to the high dependency unit for at least 24 hours, after that it is back on the ward. They think I will be in about 2 weeks so I hope to be home in time for the Bank Holiday (and also Amy's birthday).

I really need to thank everyone for their good wishes and words of encouragement, I have to say I am very nervous about the operation but more so about the days following it even though I shall be on self administered morphine so will probably be out of it but it is still worrying me big time. I think it's because I've never had such major surgery before but this time next week it will be over and hopefully most of the drips and drains will be out. As Monday draws ever closer it's a big reallity check!

I don't think I've anything else to add and tomorrow will be spent packing and making sure that everything is ship shape as well as putting some new tunes onto my iPod - I need to be singing along to Billy Joel and the soundtrack from Grease! Next time I shall be able to post news will be when I am home, so it's over and out from me and UG, with the next news coming just from me xxxxxxxxxxxx love you all

reality check part 3

Went to see the stoma-care nurse today who was lovely and has partially restored my faith in St Helier!

She explained all the in's and outs(sorry about that expression) and it appears that my surgeon likes to err on the side of caution and fit a stoma rather than risk infection which can be quite nasty. So I am preparing myself for that. What I hadn't realised is that they are unable to do the reversal until I have finished my chemotherapy which means I could have it for 6 months which was way longer that I had ever thought. There are, of course, some funnier sides to it, one of which is that it has a 'wind filter'which deodorises as it releases.........I'm wondering if I could rig up my iPod to be run by my own wind power thus saving on batteries!!!

So, with one week to go to 'bye bye UG day' I must get myself into gear to pace myself and get all the necessary bits done, rather than leave it to the last minute which is what I normally do. I have the last three hospital appts next week including the important one with my surgeon on Tuesday after which I shall definately be in a go situation.

I am so looking forward to Emma's wedding tomorrow and expect it will take all of Sunday to get over that so the time is certainly whizzing by. Keep the comments coming, it's nice for me to know that you are reading and enjoying this.

reality check part 2

Was at the Marsden today for CT and MRI scans which went well despite the fact that they were running over an hour behind for the MRI scan which meant a very long wait, but it doesn't happen very often there so it really was no problem.

I had a long chat with my asigned specialist nurse, Jan, about what had gone on and been said at St Helier yesterday and felt so much better afterwards. She agreed that it seemed that they hadn't fully read my notes which might have meant for a few less of the silly comments they came out with..but enough....I feel slightly less troubled by it all today. It's not as though I can just opt out of playing the game now, can I?!

Tomorrow I see the stoma-care nurse who will talk me through what happens if I need a bag after the operation; if it's needed, this will only be temporary but is still freaking me out a bit...it's just not natural is it? Again this is at St Helier and I will need to muster up all my reserves to listen and perhaps to be polite, not having very much faith in them at present.

Thank you for all the comments, it seems that it's a good way of communicating and I love reading the comments I hope as much as you all enjoy the postings. Perhaps if I can get a laptop whilst in hospital you could have the news at 10 ...this is Radioactive Ro for news at 10, live from St Helier Hospital!.... what a giggle that would be. love you all xxxx

Reality check

Yesterday I went to St Helier for my pre-op assessment, Amy came with me which I was so grateful for as the whole experience was a big reality check. I think all along I had just been treating the surgery as just another step in my treatment schedule but boy oh boy it is the biggy!

They explained everything to me , how the operation could be about 4-5 hours long and then I have to go to the high depenency unit; explaining to Amy not to be distressed at the sight of me with tubes, pipes and drains out of almost every orifice plus an oxygen mask - it's obviously not scheduled to be one of most glamerous days and you just know I'm going to have 'bed hair'!! It appears I will be like that for about 4-5 days before they start taking everything out and I will feel something resembling 'normal' again. I will not be allowed anything to eat so will have fluids via a drip and the occassional 15ml of water to 'wet my mouth', this is a far cry from the 2-3 litres that I drink each day at the moment. I apparently should get lose about a stone whilst I'm in there (what is it they say about always being a silver lining!).

The other thing which I hadn't even realised, was that I am not allowed to lift anything for about 6 weeks afterwards or do the housework (there's that silver lining again!)but also no driving for possibly 4 weeks. Don't get me wrong, I knew it was major surgery but not this big - maybe I was just in denial, but I must say I am dreading it now and it seems to be coming up so fast.

Today I am at the Marsden for CT and MRI scans. It is such a shame that they cannot do the surgery there, their whole attitude is so different and since the whole hospital is for treating cancer they seem to have such compassion with your situation depite the fact that they have seen and heard it all before. It was a bit of a worry when the nurse doing my assessment said that if they find a problem with the lymph nodes it would just mean 6 months of chemotherapy after the operation - I asked her if that was on top of the 3 months that I have already got scheduled in and she said "probably not then, I don't know much about chemotherapy". Needless to say I will be discussing it with my nurse at the Marsden today as they have not indicated there is a problem with my lymph nodes, I do wish people would read the notes fully before making such comments, it really winds me up!

Am now on the Rescue Remedy to try to calm me down!

Counting down!

I cannot believe that in 2 weeks time I wil lhave had my surgery - how scary is that! I have got a total of 8 hospital appointments before I go into St Helier on the 14th so plenty to keep me busy and keep my mind off the operation; some appts are better than others like the massage and relaxation therapy, so they make up for the not so nice ones. Today I have my pre-op assessment and Amy is coming with me to that, hopefully it won't take too long as we then want to do a bit of shopping which is something I find quite tiring on my own and Amy is working all this week except for today.

I have just spent a few days with Sue & Mike (my sister & brother in law) in Knaresborough, North Yorkshire which was great. I travelled with Carol who did most of the driving (5 hours driving is way too much for me at the moment). We had such a good time, taking an open top sightseeing bus around York and fitting in a lot of retail therapy including a factory outlet near York which was bad news for the plastic! Sue & Mike took us for a wonderful drive all around the Dales as Carol hadn't been to Yorkshire before and the evening sun meant that she saw it at it's best. Unfortunately I think the trip as a whole tired me out more than I thought it would and I spent all of my first day back in bed; thankfully I feel much better now but am taking things nice and slowly.

There is till quite a lot to do before I go into hospital, various things to buy like toiletries and squash and a new set of headphones as well as updating my ipod with some new music ~ will have to get Kevin to help me with that one, perhaps I'm not so IT able as I thought!!

This Saturday I am going to a wedding of a work colleague, it's at my parish church so as well as being a guest, I am also singing in the choir. The reception is being held at the Queens stand at Epsom Downs so I am really looking forward to that and was so glad that my treatment schedule meant that I was able to go; it's something I have been looking forward to for months. I must take it easy over the next few days so that I have plenty of energy to keep going all day ( I can fall in a heap on Sunday!).