The Trial begins

I finally got the go-ahead for the trial on Friday at 4.30pm after some chasing, but at least I'm not HIV positive!

So here I am in isolation, everyone who comes in the room, including Frank has to wear a mask, apron and gloves. I've had the infusions and all the initial tests so now I'm just under observation with a few checks every couple of hours. So fa so good, no obvious symptoms from the virus yet but it's only been 24 hours, I expect tomorrow will be the day. They are a bit concerned about the wound on my foot so a skin specialist is going to look at it tomorrow.

The hospital room has an en-suite so it doesn't feel like being in hospital, you don't see any patients just the nurses and doctors. I suppose you could compare it to private hospital treatment. but without the bottle of wine
:-( The food is OK too, you get choices of meals and it's served to the room.

Having said all that I will be glad to get out on Friday, so fingers crossed I continue not to feel ill and there won't be any obstacles.

Sheila x

Longest roller coaster in the world

I don't care where they claim it is, but I'm on it! (Frank says "and me").



Since the last update we've been rushed off our feet, on the leisure side we had a fantastic weekend in Brighton last weekend. The weather was brilliant and the crowds were out, people on the beach, in the sea, street artists the lot. We love the place and if we could we would probably move there, somehow we feel at home there.



That has been our only chance to get away but we are still using the camper for our hospital visits so it feels like we are away for one night!



On the medical front, it's been a busy time, my Pain and mobility are the main issues.



Re. the pain I have visited the Pain Clinic again at Frenchay for a Ketamine injection, this was given intravenously with a sedative as apparently you can hallucinate while it is being given! No nothing like that happened to me, I didn't even sleep as they had expected so they let me out after a couple of hours. The good news is, it seems to be helping, my pain is now definitely under control, so the next question is how long will it last? We don't know, could be a week or up to 6 weeks I think, so we have to wait and see and I get back to them when it starts up again. In addition the consultant at St Peters has been "tweaking" my tablet regime and so I think this has also contributed to the improvement.



Re. the mobility, what fun :-) I have been using a wheelchair pretty much all the time for a couple of weeks, the pain of trying to walk was so great it wasn't worth the effort of doing so. My circulation problems also meant I could not walk very far anyway. As reported in the last blog the stent procedure didn't do much but it did help a little and every little helps! I haven't heard about a follow-up so I have chased them to see if they have any other cunning plans or have run out of ideas.

St Peters have also arranged other things for me, a wheelchair I can use for 6 months (the Red Cross one is due back next week), the District Nurse came round to dress a wound in my foot caused by the shoes I was wearing when my feet were badly swollen, which resulted in some blisters on the top of my foot, which aren't healing well, due to the lack of circulation! Everything is linked, it feels like like a Roundabout sometimes as well as a Roller coaster. I've now got some Penicillin to get it shifted I hope.

I guess the last week has been the most trying. We have been delayed on starting the trial, due to another patient reacting to the dose , I think in the States. Plan now was, and still is, to put me on the trial on the 29th. However we are having trouble getting to the final sign-off. Last Friday I came to the Marsden for my pre-screening and there were 2 things they were unsure about, the first was my mobility (or lack of it) and the second my HB had dropped again. Damn! 8.1 this time so nowhere near last time, however 2 units required.

Today I am in the Marsden getting my 2 units and having further tests. Would you believe I have had to have an HIV test, that's all I need! It's apparently because the trial drug is a virus so they can't introduce it into an HIV environment. So we have to wait until at least tomorrow to get final clearance. The other concern today was the wound on my foot, they has a look and referred it but we got the OK on that one.

So we are one step away from the trial and quite strung out by it all.

Frank wanted you to know I am writing this sat in the ward having my blood transfusion courtesy of our new toy, a dongle which links into the mobile phone network which means I can now email and surf anywhere. I have to say, it's brilliant and if they keep me in next week, I will be updating this every day to stop me tearing my hair out :-)

Speak Soon.
Sheila x

Not Sure

I couldn't think of a title for this update, which probably reflects how I feel at the moment about things, not sure what happens next.

We went to the BRI yesterday and parked ourselves in XRay ready to see the Consultant. They decided to do a CT scan and based on the results of that they could decide what to do (including nothing). The results were not great, the tumour has grown a bit in the last month, not hugely, but it's obviously enough to give me all these problems. She suspects that the stent is not the only problem up there and due to the pressures involved re-stretching the stent again may not last very long or do any noticeable good. I was given the choice of having a go or leaving it. Not a difficult decision, since I am now pretty much confined to a wheelchair.

The procedure took about 40 minutes, same as before, local only, yes it did hurt but it had to be done. Unfortunately as she had predicted it wasn't entirely successful. She managed to re-open the stent fully and insert another balloon into it, but given the pressures in this area, the flow improved only to about 75%. This sounds good, but in reality it won't have improved my mobility by very much. Disappointed to say the least I then had to spend 4 hours on my back dead still while the artery healed and sealed, as there are no stitches involved.

I was finally discharged about 8pm and got home around 9pm after picking up a Chinese on the way home.

What now? Well she will write a letter back to the Vascular team, who referred me, letting them know her findings and they will discuss me at a meeting today. So all I can do is wait. Meanwhile, my legs are still swollen, possibly slightly less judging by putting my clogs on. My mobility is the same and the pain also.

As far as Marsden are concerned they have given me provisional dates to start the trial of the 19th. These trials now are my best hope of sorting out my leg in my opinion, as they may shrink the tumour and relieve the pressure on my nerve, artery and veins, all of which contribute to the leg problems. I'm waiting for the letter to confirm the dates, it would be good if it was sooner.

If the weather picks up we may get away for a few days now the kiddies are back at school it should be safe :-)

Speak Soon
Sheila x