Day 8 Success

We went to the Marsden on Monday and much to our astonishment my bloods were OK and we were able to proceed with the Day 8 treatment. This consisted of a 30 minute infusion of a drug called Gemcitobine, a fully licensed chemo drug. Again it has come out in my legs, so it looks like the Gem and not the Virus is causing the redness below my knees, something to report back on Monday. We are therefore blessed with the rest of the week off, pity it's so cold!!!!!!!!!!

On Monday we are scheduled to go again for monitoring and the all important CT scan, so fingers crossed it is doing something. In myself my legs have reduced in size and I think the circulation has improved a bit. Today's visit to the Nurse (previous visit was on Monday) for my foot wounds showed a big improvement in the heel and progress with the healing of the ulcer on the top of the foot, so I'm really pleased with that, hopefully we have turned a corner. The dressing will still require changing every other day at the moment.

So we are enjoying a bit of chill out time, catching up on some chores at home, nothing too strenuous though.

I'm hoping to have some more photos for you soon, my technician is working on it :-)

Meanwhile Frank had to have a blood test this morning, he was like a baby, man pain is such a sad thing isn't it? You can imagine how much sympathy he got from me :-)

Speak soon after Monday,
Sheila x

Quiet and boring

The rest of the stay was quiet and pretty boring, you can't have it both ways. I was allowed to sleep through the nights with no interruptions. One night the fire alarm went off and I thought how am I going to get out of here, the ward is on the 3rd floor, but it was a false alarm and we all settled back down again. The only other reaction I have experienced again is the redness in my legs, it looks like I am wearing knee-high red socks. The left leg is worse than the right. Last month they put it down to the antibiotics I was taking for my foot wound, but this month there was no choice but to attribute it to the virus. They can't explain, it doesn't hurt as such, the shins are tender to touch, but otherwise fine. My skin below my knees replenished during the week, Frank was calling me a lizard, maybe that is connected, we will see at the next dose. My leg wound is improving but it will be a very slow process, I am now mixing appointments between the District Nurses at weekends and the Surgery during the week as I can get there with Frank's help.

Glad to be home now, yet strange being out of that room, but I know which I prefer. Think that's everything for now. We return to London on Tuesday for Day 8, the treatment I missed last month due to my bloods, so watch this space.

Sheila x

The Saga continues

On Monday we clocked in, had the bloods taken and waited for the results. We expected a problem with the bloods but what we didn't expect was a problem with the freezer they keep the virus in! Apparently overnight the temperature in the freezer had reached -40C and this was too warm to use the drug! A new batch would not be delivered until later so we were free to leave and return on Tuesday.

Yippee you might say, free to do some retail therapy, but unfortunately even though we explained to two separate wardens that we had forgotten our blue badge we came back to a ticket on the van, £100, unless we pay in 14 days it's then £50. So now we have to write to them to try to get it rescinded. Doh! Expensive shopping trip.

Returned Tuesday to be told I would need a blood transfusion as my HB was 8.8, but they would give me the treatment first. That passed without incident but after about three hours I started to feel cold and within about 15 mins I was shaking uncontrollably and shivering. They gave me some paracetamol and another drug I can' remember the name of and after a while it passed over. I can laugh about it now but at the time it was horrible, like flu, my temperature went up but I felt frozen. They were trying to get the blanket off me in case I overheated but I felt so cold I wouldn't hear of it.

This was about 6 pm yesterday but since then I have been fine. I'm having my blood transfusion now and hopefully the rest of my stay(until Friday) will be quiet, I'll let you know.

Speak soon.
Sheila x

Latest Update

Marsden phoned this morning to let me know the trial was to continue and I would be in for the second cycle of treatment next week.

Good News. :-)

Hectic Week

Got to Marsden on the Monday and guess what the bloods were all shot. The main concern was my liver functions had gone up. I attributed this to my lack of alcohol since last week so immediately had a port when we got home. My shins were also red and hot and this was attributed to the antibiotics the GP had given me for my foot wound, so I was old to stop taking them. Unfortunately this meant no treatment and a trip back on Thursday for another blood test.

Thursday off we went again, same thing really, liver function improved but still up (good old port!) but platelets dropped. Again not happy to proceed, could we come back tomorrow :-( OK a night at Crystal Palace , believe me there is no credit crunch in Wetherspoons. It was Curry night, not quite restaurant standard but not bad for a pub and packed out, people were having to wait for tables at one point.

Next day, bloods are improving so no need for any transfusions, but to play safe can we come back on Monday and they can decide what to do with me as I've missed a treatment from last Monday so we are off-piste for the trial.

Monday, bloods are fine, legs have calmed down, all systems go? No, they still haven't decided what to do with me, do we carry on, do we give up or some other option. They will phone me by end of play Wednesday to let me know what's going to happen once they have had their little huddle about me.

So we are tired, glad to be home until at least next Monday (we hope) but uncertain about what's going to happen next.

All part of life's rich tapestry, but hey wasn't the weather great?! More where that came from please.

Speak soon
Sheila x

Trying Times

I don't think much happened on Thursday, it was just a day of monitoring how I felt, which was fine, my tempaerature, which was fine and more bloods, which were fine. I had hoped to get out early but it's not allowed on the first round, no matter how you feel, so Friday was a bit of a surprise.

It was touch and go on Friday whether I got out or not. My left leg has developed a rash on the shin and was very hot, classic symptoms of a DVT! What can I say, all we could do was wait and see if they could get me a doppler check that day. Fortunately they could and it was proved negative. The question now was if it wasn't a DVT, what was it. They did not believe the virus would cause this and eventually put it down to the antibiotics my GP had givrn me for the foot wound? I wasn't going to argue if it meant going home so I promised to stop taking the tablets and ring in immediately if anything got any worse. Not sure what time we eventually got away, but we didn't get home until 8.30pm, so being tired, I went to bed pretty much straight away, glad to be home.

Now it's Sunday and we are packing again to go later to London, ready for tomorrow's appointment. This is called day 8 and is my second dose of Gemcitabine to complete cycle 1, hope all goes well.

Speak soon.
Sheila x

What day is it?

It's funny but you soon lose track of time in here, I thiink it's Wednesday or at least I hope it is. Today I was told my HB had dropped again and I would need another 2 units of blood. I'm on the second bag now and it's 10.40pm! So I'm pretty tired. I hope I'm ot going to need blood every week from now on. Anyway. Also today the top man came to look at my foot and was happy with the healing so far. Just keep doing what we are doing. So that was reassuring. Apart from that it's a case of sitting around waiting, although they have lifted the quarantine so maybe I can get out for a while tomorrow or even get out! That would be good. Yes I haven't developed any of the symptoms of the virus this time. :-)

Anyway speak soon
Sheila x