Macmillan Fundraising

My brother, in his infinite wisdom, has decided to undertake a bike ride from Toulouse to Barcelona over the Pyrenees. If you think that's mad, the rest of the group (6 very keen bikers) are doing twice the distance from Calais as they are not constrained by work!

The target is to raise £20,000 for Macmillan and the Dorothy House Hospice in Bath, and they are getting towards it, but have a long way to go.

If you would more info on the group and ride then please go to www.sixmadmen.com The site also contains details about sponsorship if you would like to support them for such a good cause.

I have a Macmillan nurse, she covers the whole of the area, working out of Weston Super Mare. Bristol also has one. Not a lot for such big areas is it. Jean provides patient support in the hospital environment, knows her way around in order to get things done. A vital role from the patient's viewpoint, allowing the consultant to work on more pressing matters. Certainly for me, Jean is a critical link to the Bristol Oncology team, as shown recently when I had to have some blood here instead of London.

Thanks for reading
Sheila x

Leg didn't want to waste any time waiting

for the Marsden so it thought what a good idea I'll keep them busy, just in case they get bored.

Over the weekend my leg was slowly getting larger and by Tuesday I noticed my good leg had also started to swell. I believed I was having or had had another DVT. Not knowing what to do or where to turn the Vascular Surgeon seemed a good bet. So I phoned through for an urgent appointment and they got me in for Friday. The pulse in my ankle is now very difficult to find and read. You can just hear it very faintly. From that he concluded the stent work should go ahead asap and they will endeavour to get me in next week. So here I am waiting for a phone call to tell me to pack my suitcase. It can't come soon enough, my leg is now big and feels like it's going to pop. Getting around the house is limited to essential journeys only and outside, it's strictly wheelchair over 50ft round trips. The pain is horrendous and none of the painkillers seem to touch it. For the last three nights I have also slept upright on the side of the bed, it is too uncomfortable to lie down and this seems to be my most comfortable position, but of course flies in the face of the usual adcive of keeping the leg up, I just can't. I've almost fallen off a few times too, but seem to be getting better at the balance bit now. Rather that than no sleep.

So this week we will have no plans until we hear from the hospitals, and as I said the dooner the better.

Speak Soon
Sheila x

Marsden and Brighton

Wednesday's visit to the Marsden was uneventful really, we discussed the next proposed trial and this one looks OK. Basically it's a mix of an existing general use drug, which I have had before and responded OK to and the use of the experimental element, which is an injection of a virus generally found in ponds and ditches. Although the virus is common and a lot of people will have had exposure to it "naturally" the trial precautions are to "quarantine" me for a few days after I have had the injection, so there will be stays in hospital. While the virus lives in my body and before my immune system kills it, the theory is that it will go to work on the cancer cells, invade them, and like a parasite if you like take what it wants and leave them for dead. Side-effects to date have been few and not serious, results have been promising with some tumour reductions recorded.

We expect to start in September and we are just waiting for information now. This trial is being run by a Canadian drugs company but Marsden have been involved for about a year so far.

Brighton was it's usual busy, interesting and lively self. We really do love it there. We went back to our favourite Spanish restaurant and ate far to much. Started talking to a regular diner who had been there last time too, interesting stories about National Service, plus of course the inside track on the restaurant, useful for future use. He has been going there once a week for the last 12 years when his wife wants a night off cooking. We also had our favourite chinese take-away, such creatures of habit. We didn't just eat, we found other shopping areas we hadn't seen before and areas of the Prom too, Frank got plenty of exercise pushing me along, unfortunately the camber on the prom was terrible to try to self steer, so I was a lady of leisure most of the time. Shopping in a wheelchair is hard work, everything is above your head height so you can't see it, imagine being a 5 year old walking around a shop it's very similar, in terms of what you can see or reach. Many shops don't have ramps to get in and the everything is so crowded you can't get through. I have man-handled displays out of the way to get through. I have to say nothing should be built without input and approval from a wheelchair bound person, but that's another battle for another day, I'll stick to the ones I've got thanks :-)

So again we are left wanting for more in Brighton and will return again in September when the silly season is over. It's probably one of the few places we feel we could live.

Anyway must go. Speak soon.

Sheila x

Slapped wrists

for how long it is since the last update, it only felt like about a week. So what's been happening since the last update.

Jimmy Tarbuck was very good, it was the night the pier burned down, nothing to do with me Gov! The Playhouse is a very small theatre so it was just right in terms of atmosphere and ability to see facial expressions. We took binoculars but they weren't required. Eddie Large was in the audience so he got a few mentions during the night, couldn't see his wife, so that was OK. I had a wheelchair spot at the back of the stalls and it worked fine. We were amongst the youngest there though, which surprised me a little, I hadn't realised he had been around for so long.

On the 28th we went to the BRI about my ankle. The xrays confirmed nothing broken but it looked like I had done some soft tissue damage. They gave me a pair of metal crutches to help me walk and showed me how to use them. They also contacted Katie my physio to compare notes and hand me back to her. At least I felt better knowing there was no break or fracture.

On the 30th we went to the Marsden to discuss the new trial. Unfortunately it didn't go to plan as one of the drugs involved I had had before and when it was being given to me I'd had a bad reaction and it didn't work either! For some reason the Marsden were unaware of the this so I showed them the paperwork describing the reaction and the drugs and processes used to restore me. On that basis they were not prepared to put me on the trial, as the reaction could be life threatening. So all were disappointed and we are waiting for the next recommended trial. We will return on Wednesday to discuss, but it's 2 weeks lost, and you have to hope this one proves more suitable.

On the 4th I had the appointment with the Vascular Surgeon about my circulation in the right leg. He needed more info to decide whether to do anything, like scans from the Marsden, so I have to return in 4 weeks to him. His inclination was there was already a lot going on in that area that he may well leave and monitor, but he would investigate more first.

Tuesday 5th was my first 3 month Vitamin B12 injection, where did those 3 months go?

On the 7th I saw Katie my physio. She is concerned about my leg and with everything which is going on, she and no-one knows whether there will be any improvement or not in the future. I'm not prepared to think that it will be this bad once the DVT goes and the swelling disappears. So I am carrying on with exercises with a view to getting back to the gym soon, but I may be just kidding myself. Let's hope not. I am however going to consider an adapted car because I can't drive at the moment and it's a big loss of independence to me. The loss of mobility is the hardest thing to deal with, it's frustrating and hard work and you become totally dependent on somebody else, in my case Frank, and it's not an easy place for either of us to be.

Next stop Marsden on Weds and 2 days in Brighton, hopefully the sun will come out. Will update Blog on my return.

Sheila x