Pictures

The pictures as promised, no particular order, this blogger is not entrely user-friendly. Never have got round to looking at Facebook.

Simon and Charley's wedding - July 12th - the confetti was coming back at us but we tried

A slow walk in the Gordano Valley - destination the Black Horse :-)

Ross and Rosie's wedding - June 21st - a great day
" You will be sleepy and not remember a thing" they said, I don't think so, I was awake and watched my colonoscopy on Telly!

Cornwall - chilling out before going to 15 for lunch at Watergate Bay, Newquay

Cornwal again - walk from campsite to Polly Joke Beach, terrain was OK for me, walked about 2 miles I think (very slowly)

Quick update

I had a couple of appointments last week both of which were made before the DVT and so the outcomes were affected by the DVT. ON MOnday I was to be measured up for a leg brace to support my ankle. As my ankle and leg were swollen this couldn't happen, but she is sending off for something else for me and it should "only take for weeks". Four weeks is a long time if you can't walk, she did concede itt probably was.



The second appointment was the Pain Clinic. Again she couldn't offer me anything while I am on the blodd thinners for the clot, so I have to go back in about 6 weeks.



Meanwhile leg is very painful, most sweilling is below the knee and down the ankle to my toes. We are using the wheelchair for most places at the moment. If my ankle is still bad on Monday I'm going to the BRI to have it checked for a fracture, it doesn't seem quite right to me.

I tried to put some photos on but it bombed, I managed to retrieve the script so I will publish this, and then will try again later with some pictures, off to see Jimmy Tarbuck tonight at Weston Playhouse, so I've run out of time now.

See ya

Sheila xx

Let's go round again, one more time.........

Sorry about the lateness of the update, but you will soon realise it's been hectic as usual.

We went to the Marsden on Friday and spoke to the Doctors there. They hadn't had any feedback from Bristol so basically we briefed them on what had happened. They were disappointed about the Radiotherapy decision but it's Bristol's call, but they wanted the circulation problem sorted out before considering the next trial. They like you to be "fit" before a new trial. The next set of trials are brand new, many are tablet-based but they are straight out of the animal labs, not tested on humans and so the first priority will be to establish dose levels, something which was much more advanced in the trial I have just finished. So the potential benefits could be low because of the dose levels or high because it's a new drug. That's the gamble. Anyway we left it, that I would sort out my leg in Bristol and report back to the Marsden on the 28th.

Over the weekend (Saturday and Sunday) my leg started to swell, oh no, not a DVT? It wasn't going down so on Monday I went to my GP. She didn't like the look of it and tried to get me in to the BRI the same day through A&E. However instead they said they would see me at 9.30 this morning in the old DVT clinic. Nice to see the old faces but not to be there again. Again I had to have another ultrasound, this time concentrating on the veins and not the arteries. The picture at the top of my leg is very muddled with all that is and has gone on. The old DVT has meant blood has been diverted through new pathways by my body, as part of the healing process, but it makes the flow much harder to track. The outcome was a probable small DVT has developed since last week, it cannot clearly be identified but they are pretty sure that's what is causing the swelling.

The DVT nurse contacted the Marsden and they decided to put me on Glexane, the stomach injections I was having before, once a day. Poor old Frank had hoped he would never see those injections again, but he will do them for me like last time. I don't know how long I will have to have them, that will depend on the vascular consultant review, which I am now waiting for.

So there we are, back on the DVT routine, something we had feared when my leg started playing up again. The good news is they are not proposing to use Warfarin and my ability to start a trial should not be affected by the use of Glexane. Phew!

Not sure when the next update will be, but keep looking there may be another one this week.

Sheila x

Back on the Roller Coaster

Just when you thought you might be climbing to the top of the ride you go all the way back down again and on to the next part of the journey.

Today I had the review in Bristol, all the scans and whether they could do more Radiotherapy. The answer was no more Radiotherapy, there is a danger it could do more harm than good in an area which has already been damaged to a degree. They were considering in particular that damage to the bowel was a real possibility and therefore a step too far.

So what now, back on the trial, well maybe. I reported that my leg has got a lot worse in the last week or so, I have lost my balance and fallen twice, happily with no damage, but this is now a real possibility. My leg control has deteriorated, don't get me wrong, I can still go to the gym and do my routine without too much cardio leg work, so my core fitness is sustained, I just can't walk very well and definitely not without a stick. I also reported that in the last week the temperature of my foot had been very low, ice cold at times. The doctor felt for circulation pulses and referred me directly to the Vascular department to get my leg checked out.

They use an ultrasound machine like a baby monitor, and for those with a long memory you may remember this was a test I had before when they decided to put a stent in my right leg artery. This showed that my circulation was down to 65% compared to 89% immediately after the stent op. It looks like the tumour is pressing on the stent causing it to malfunction or requiring replacement. These results have to be fed to the relevant consultant for him to decide what if any action he needs to take at this point. Waiting again.

When we got home I rang the Marsden, with the outcome of my review,to get back on a trial asap. They said the stent business may have an impact, not sure why, but I've got an appointment on Friday to discuss next steps with them and of course now I want to get back on a trial yesterday, for those who know me!

Doing all we can as quickly as we can, and I really can't fault any of the medical profession in pushing my case through, everyone is really trying their best for me. That includes poor Frank, who has been ferrying me around door to door all day and via wheelchair to various clinics in different buildings. He's in danger of losing weight at this rate, only joking! We have started on the grog already tonight as a stress buster and I'm sure my Buddha solar light bought only today will remind me of him for a long time to come :-)

I'm hoping to put some photos on here again soon, it's been ages, but not today. We have been busy again, spent a lovely weekend in Cornwall near Newquay with a group of friends. It rained but what the hell we had a laugh. Great campsite, we will be back :-)

That's all for now, keep looking there should be another update on this roller coaster ride at the weekend.

Sheila x

Busy Two Weeks

I've just had to read the last entry to see what I had been doing.

OK the last couple of weeks have been about getting scans and colonoscopy results to the Marsden, so that they are able to make an informed decision on next steps. I'm still off the trial drug.

We managed to get a CT and MRI scan done at the Marsden and the Colonoscopy done at Southmead. All the results got to the Marsden and yesterday I had my review.

The reason for the drop in blood count has been attributed to an internal bleed of a blood vessel near the site of the tumour, which has now stopped of it's own accord. This is backed up by the fact that my HB is now 10.5 and rising. So nothing to do there.

The CT scan showed that although the tumour was shrinking in places as we knew, the shrinkage was not uniform and part of the tumour is continuing to press hard on my nerve at the top of the leg. This is almost certainly causing the foot drop which has been diagnosed since the last update and is causing me to limp as if one leg (the bad one) is shorter than the other. The limp has become quite pronounced and walking without a stick is no longer possible due to balance problems. I have new exercises and aids to try to correct the problem, but it may remain with me now, it's a question of what can be done to ease the pressing of the tumour.

The Marsden have recommended a course of Radiotherapy directed at that area of the tumour. This is now being discussed with Bristol as they have to check on previous radiotherapy, I may have already had the maximum in the pelvic area. It will probably take a week to get a decision. After the radiotherapy I can go on a new trial at the Marsden, they have several new ones opening in the summer, so I will not have to wait to find one I can go on. The Marsden will decide what trial and discuss consent with me. If I have Radiotherapy I will have to wait a further 4 weeks after to begin a trial, that's the rules they need the body to flush out old treatments. If I have already had the max Radiotherapy we will go straight to another trial and hope that it can hit the tumour against the nerve, but obviously chemo is not targeted like Radiotherapy.

So we are waiting...........sorry there is so much info in this, but nobody said it was ever simple!

Meanwhile we have also managed to grap 3 days in Cornwall. Some friends took us to 15 at Watergate Bay near Newquay for lunch. It was a 50th present for Frank and a Birthday meal for me from last August! Lovely, Jamie Oliver wasn't there, but the food was excellent, and the Antipasti starter was to die for. Beautiful views over the bay and on a good day the windows open. We will definitely nip in for lunch again in the future. They do dinner as well but you won't get the view in the dark :-) Great to be back in Cornwall after about 4 years away, we will aim to get down there more if we can get a window.

We've also been to Ross and Rosie's wedding in the Cotswolds, beautiful setting and very happy fun day, Scottish dancing, kilts, plenty of grog and the Swan Hotel in Bibury was a wonderful setting. Really enjoyed it and Rosie was a picture.

Had two Birthday parties to go to on Saturday, one was an 80th and then two friends shared a 50th, both parties were in Bristol, but it was a bit hectic and a shame to have to leave one as it was getting into full swing.

So all in all, we have been very busy as you can see.

Speak soon
Sheila x