What Can I Do For You??
I've just come back from a very long day at chemo clinic. It was made longer as I had to wait for the ambulance to collect me both ways as I need oxygen. Apparently, if you need oxygen then you have to go by ambulance rather than a car.
The ambulance arrived about 10am and I got to the hospital about 1040 for my 1030am appointment. Not that it really matters as you usually see the doctor at least an hour after the appointment time. They had arranged for me to sit in the treatment area on the pull out chairs so was pleased as those chairs support my back and i can keep my legs up so my ankles don't swell. I thought I would spend this time doing my cross stitch but ended up doing my memory book for hubby which at the moment is in quite a fun area of my life so have enjoyed doing it.
I did manage to catch up with some of the other women that I usually see so it was good to catch up and they were pleased to see me.
I saw the consultant about 1130am. I did not see the chief one and I didn't see the point of asking when I like this one anyway. I was a bit surprised not to see the chief one but I can ask next week anyway. However, I was taken aback when he said 'what do you want today?'. I know I'm bossy and often demand things but I didn't think the responsibility was mine to decide what I wanted today!!! He was really pleased with my blood results. My protein levels are normal as are my liver and kidney tests and my haemoglobin is reasonable as well so I think I've given everyone a surprise that just 2 weeks and 2 days after my 'crash', my blood results are normal and I can walk without oxygen for a short distance and sit for about 15 minutes now without oxygen so it does all feel so unbelievable and if you looked at my blood tests, they would seem unbelievable as well.
He examined me and can't feel my liver so that is good and when he examined my lump, it is the same size as it was 4 weeks ago so that is really pleasing. My skin one today looks about 1cm across so looks smaller than yesterday and about the same size as last documented in my notes. We discussed me continuing on with my bone strengthener and as he is the man running several of the bone drug trials about the drug that I'm on, I think I should bow to his superior knowledge!!!! He feels that as I have had 2 years worth and there is evidence that it stays in your bones for some time ( I think he said 3-4 months), he felt we could miss that out for now and have the herceptin and restart taxol today. He did ask me about when I last had an echo done of my heart and I really don't know but said I think it could be a year ago. We seem to have an unspoken agreement not to do any heart echos on me as if they find my heart function has gone down then they will have to stop the herceptin and as we all feel that is keeping me alive, the risk seems worth it. He then ordered all my drugs and I went back to my comfy chair and had sandwiches for my lunch. I have just realised that no-one had made a decision about the dosage of the water tablets and I did tell him that the palliative care consultant wanted the oncology team to make the decision. Oh well, feel safer on them at home at this dose and must remenber next week to ask.
I started the pre-med part of my chemo about 2pm and they ordered the ambulance for 4.30pm. The pre-med consists of piriton that makes me very sleepy within about 30 minutes and the steroid, dexamethasone which makes me very lively about 4-5 hours after taking it so will probably spend quite a bit of time awake tonight. I take them for 3 days so will cut them back to the dose that I'm taking now on sunday. Also. they give ranitidine to stop stomach irritation which confuses me as the drugs are all given intravenously. I'm already on a 'stomach protector' tablet due to the steroids and the diclofenac so that's why I'm a bit muddled over why I need this as well. I know I don't tend to feel sick with taxol unless it is dripped in too fast but as I'm usually asleep this is out of my control as I said before they can't put taxol through the machine as it has a filter on it so the timing always seems a bit random anyway.
I also had the herceptin which causes me no problems apart from a runny nose.
I sat next to a lovely Polish lady about the same age as me and with a similar diagnosis but only just started the horrible secondary pathway. She was telling me the value of beetroot juice!! Of all the juices - why beetroot when I'm frightened of it.
I did have a sleep eventually and woke up about 430pm and the taxol was just finishing. The nurse flushed and changed the line and bungs and then I waited till 515pm for the ambulance. We got caught in the rush hour traffic plus there had been a crash on the motorway so didn't get back to 6pm and had more sandwiches. Hubby had dropped in and collected some of my things and had left me some creme caramels and 2 chocolate eclairs so that was wonderful and I really enjoyed eating 1 of each with my sherry. Quite deservedly, I now feel sick but hopefully, I can have the extra strong anti-sickness pill which makes me sleep so should counter the awakeness of the steroids.
Now have a delightfully, cheery lady opposite me but she is suffering with a degree of memory loss that she is aware of so that must be distressing. At least, most of the time I am unaware that I have forgotten something until someone points it out!!!!
Leave it at that for now. At least you know what happened today.

since I last posted i've been travelling around a bit. I went to High Wycombe for a meeting about living with secondary breast cancer and stayed in a very lovely hotel courtesy of the Breastcancercare charity. It was good to meet other women in the same boat and listen to their experiences and of course, I always enjoy an uninterupted morning on my own and they even arranged for me to have breakfast in bed. I even got a train seat which surprised me at 5pm. I had got very annoyed with Virgin the night before as they would not let me book a seat and I knew I could not stand for that long. Still mean to write to them as I'm going back again soon for the second part.
Saturday night, hubby and I went to his sister's 40th birthday. It was unbelievably warm and we managed to sit outside till 11pm and it was only the 28th April - amazing and frightening at the same time.
Monday - we went to have our photos done at Venture. It was mainly good fun until Woody accidently elbowed AJ and we had floods of tears and temper tantrums. It was difficult to get him back into the swing of things. We had bought various things with us like my knitting, lego, x-box contoller, Saints shirt, teddies etc and of course 5 of my penguins. WE sat lined up with the penguins but AJ was deterined his orang-u-tang was going to be in the picture. It took a lot of cajoling to allow a photo to be taken without the orang -u-tang and then 1. That will be interesting - a line up of penguins and then an orang-u-tang!!
Tuesday, I set off to Gloucestershire to see my poorly friend in hospital. Luckily, another friend came with me so we could support each other. We also tracked down one of her work colleagues who is a good friend so she could fill us in. It was very upsetting to see our friend in such a poorly state and she obviously hadn't realised how poorly she had become so quickly. Her family were coming over from Australia and it's been touch and go whether they would get there in time. All day I've been waiting for that phonecall to say this horrific disease has claimed another young life.
It is a very odd feeling as the 2 people who I kept in contact with after they contacted me in Sept 05 after receiving my disastrous results post surgery have both had liver secondaries and not lived long. I now feel I am living on borrowed time as I am fast running out of chemo options. This week has not been good on that front - 2 other people from the forums that post a lot have now got secondaries. This is very scary and makes me wonder about the stats they quote about survival with breat cancer. It has made me feel I need to get on with planning things and organising what I want for my crematorium and getting on with memory boxes and photo albums. I would hate to leave a mess behind and for people not to know what I wanted. I have a very beautiful book with pretty flowers on which has become my 'death book' so will contain all the things that other people will need to know at that time.
This journey to Glos took a toll on my feet. All day I kept feeling I had a piece of paper between my toes and my foot but couldn'tsee anything until the train home when i discovered a massive blister going underneath 3-4 of my toes. I did pop itbutit filled up again so spent the next few days hobbling plus the hot feeling I had before with the chemo. I finished this course on thursday so akm now feeling better but my finger nails are cracking and so is my skin on my hands and feet. I'm going through hand cream like water.
Saturday -after going to the CO-Op and into town I just became overcome with tiredness. Unfortunately, hubby was working and after trying to pour milk into the frying pan I gave up and phoned a friend to help. She took them off to the BBQ and hubby wnet after he came back from work and I just slept.
Today, I feel more human and my feet are definately better. My sister and family came down. Woody, his cousin and uncle went to the Saints v Southend match which they did enjoy and the rest of us went to the Sealife Centre.
That is that apart from I've still got some beetroot in my fridge in a bowl and I need someone to empty it out and clean the pot. I'm so phobic about beetroot I cannot even bear to touch the bowl and there is no way I could wash it out so if you are passing this way and want to help - please can you dispose of the beetroot and wash the bowl cos I'm nearly having panic attacks each time I open the fridge!! I suppose that would be a novel way to lose weight!!