MRI scan

Had the MRI scan this afternoon, probably won't get the results until my next clinic appointment at the Cancer centre.

Over done it!

I've been very tired over the last few days following the chemo and went to work today when I probably shouldn't have. Hence I was so tired this evening that I didn't know what to do with myself. Other than the tiredness I'm generally okay although have got a bloated stomach and a bit of indigestion.

So far so good

Haven't had any adverse side effects from the chemo yet although was not able to sleep at all on Wednesday night. I think this was due to the steroid infusion. I seem to remember before having a few sleepness nights following the steriods. I also have to take them in tablet form for 3 days after the chemo but they don't seem to have the same effect as the infusion.

Haven't had the need to take any anti-sickness tablets yet either which is good so far.

The steroid must have still been quite high in my blood stream on Thursday because I was on quite a high for the majority of the day although did start to slow down by the evening. Unfortunately I can't predict when the fatigue and tiredness are going to set in but it is usually mid to late afternoon and the evenings. Once I start getting tired, I also get a bit grumpy as well and the kids get the brunt of my frustration. (Poor things!!)

First Navelbine Chemo

Started on the next chemo regime with Navelbine today. As usual though, the line in my arm was not playing ball. The nurses were not able to access the needle that was inserted last week and left for the chemo. Neither blood would come out or fluid go in so this one had to come out. Five attempts later we finally got a working one in but not before I was left with 5 needle puncture marks in my arm. What a nightmare this port is turning out to be!!

I started out with an anti-sickness drug first (Metoclopramide). Within seconds of this going in I started feeling really weird and had a funny reaction to it. I didn't know what to do with myself, I felt really anxious and couldn't keep still or concentrate on what anyone was saying. It was horrible, I just wanted to go home and thought, what on earth have I let myself in for, I don't want the chemo. The nurse was a bit concerned and said she would give me a break before giving the chemo. I just wanted it over and done with so I could get out of there. These funny side effects seemed to wear off after about 20 mins and I was able to proceed with the chemo and steroids.

Also had an x-ray on my pelvis and hip this morning.

Angry and Frustrated

I've been feeling quite angry these last few weeks. Can't really put my finger on why but I suppose it is to do with all that is going on with me. Why me etc. I suppose I am angry at the world. Trouble is, anyone that annoys me is getting the brunt of my frustrations, well strangers anyway. Especially those nosey parkers that question why I've parked in a toddler and parent spot at Waitrose when I'm feeling tired and in a little pain and don't want to walk the length of the car park. Anyway, I've applied for Blue Disabled Parking Badge which will help with that.

Went to see Les the healer tonight and he has helped to alleviate some of these feelings. Don't think they are going to go away too easily though and he has given me a meditation CD to try at home.

Discussion with UK Onc

Usual clinic appointment today followed by Pamidronate. I showed Dr Barrett's Registrar the recommendations made by the Leonardis Klinik.

They have agreed that the recommendations seem sensible although have reservations about starting the Navelbine so soon if the tumours are not giving me a lot of pain. They didn't think there was a need to rush things even though there was evidence of spread from the PET scan. As an alternative, they discussed the possibility of postponing chemotherapy until after Christmas. If any tumours were giving me any pain then they could treat each individual area with radiotherapy. It was pointed out that there was no evidence to suggest that treating with chemo early helps slow the progression! Also, they don't want to run the risk of running out of chemo options. I declined the radiotherapy at this point.

I said that I did not wish to wait and wanted to start Navelbine as soon as possible (as per Dr Draczynski's recommendation) and therefore I shall have my first infusion on Wednesday 18/10. The UK Onc said that normally this chemo is given as two infusions, 25 mg on day 1 and 25 mg on day 8 and then a 7 day break. However, as recommended by the Leonardis, they have agreed to give me 40 mg every three weeks and will monitor my blood count accordingly.

An MRI scan has been requested and I shall be having an X-Ray next week.

It has also been suggested to me that I discontinue the Pamidronate infusion and change to Bondronat tablets due to the possibility of long term use of Pamidronate causing more problems in the bones - especially in the jaw. I said that I was not happy to do this as I had read on the internet that tablets are not as effective as infusions. They are happy to continue with the infusion whilst I am having chemotherapy but would like to consider a change in the future. I did question whether this was a monetary issue! I need to get some advice from the Leonardis Klinik as I have also been shown a medical article which says that Zometa is more superior than Pamidronate.

So much information is buzzing around my head!!!

Following the meeting I went up to West Ward for my Pamidronate. Unfortunately this wasn't as straight forward as usual. The needle that went in yesterday wasn't allowing any blood withdrawal or any flushes in unless I pushed it down which wasn't going to be any good as the Pamidronate takes an hour. So, that needle had to come out. They tried the next needle and I nearly went through the roof. It hurt! This needle bent. So they tried another needle which was successful and has been left in until next week when I have the chemo. I hope they can order enough of the right needles so that I don't have to go through that again!!!

Line Access

District Nurses came today to access the port for my infusion tomorrow. I put some numbing cream on the spot an hour before they arrived in order to limit the amount of pain the needle would cause when it was inserted. This seemed to work relatively okay and kept the pain to a minimum. There was a problem with the needle however, it was too long and protruded my arm by about half a centimetre. In order to draw any blood or flush the line, I had to press the needle down. It was thought that this would not be a problem tomorrow.

Went into work as usual but felt really tired. After I had collected Freddie from school this afternoon I had to go to bed, which ended up being for 3 hours!

In need of some healing

Saw Les the Healer this evening for my weekly appointment. I think since coming back from Germany I have been under a lot of stress. I've been really tired and quite grumpy so I needed some relief from this.

I also talked to him about the scan results. Les is always very positive about my situation and he is able to give me a lot of support and advice when I'm going through such a tough time. He truly believes that I can over come this but has made some suggestions tonight that I will find hard to carry through to his word. Giving up meat (certainly while the cancer is active) and giving up alcohol!! I'm gonna find the last one hard to do, not that I drink loads but I'm thinking that just one now and again can't do any harm. Becoming vegetarian is also hard in that I'll have to cook different meals every day for the family. I did try being vegetarian last year when I was first diagnosed but found it hard going.

Also, having read Gloria Hunniford's book about her daughter Caron, I'm not so sure that all this will make a difference!

Leonardis recommendations

Leaving the clinic at 10am this morning to fly home so very little time for last minute discussions with the Doctors. They've given me a sheet of recommendations that I can take back to the UK and give a copy to the RBH. Spoke briefly with Dr Jacob and she said that radiotherapy is only necessary if there is a sign of fracture.

I spoke with Dr Barrett at Reading in June concerning the chemo Navelbine so I'm hoping that it will just be a case of organising a start date although I remember she was keen for me to have as long a break as possible between chemos.

We were just in the middle of breakfast this morning when in walks Cher to join George Hamilton! Talk about breakfast with the Stars!!

Just as we were leaving for the airport, Dr D stopped to say goodbye and also reiterated that it was important to start on Navelbine as soon as possible!

PET Scan

Left the clinic at 7am for a 3 hour drive to Stuttgart for the PET scan.

Had an injection and had to lie down for 30 mins. Felt a bit wousy and then a further injection which gave me a stomach ache for 5 mins. Then had the scan. Had to lie still for 1 hour. By the end of it my left shoulder and arm were killing me and I couldn't wait to itch my nose!!

Unfortunately the scan results were not as good as I was hoping. There is an increase in size of two of my tumours. One in the hip and one in the back midway down. Obviously I was disappointed with the results. The PET scan specialist did say that although things did not look good he said that there was no spread to the liver or lungs and therefore we are only looking at one type of metasteses which would be easier to treat.

Had a meeting with the Oncologist later in the day back at the clinic and they said that it is not as bad as it seems although they were a little concerned about the size of the tumour in my hip. They want me to arrange an MRI scan and then discuss with my UK Onc the possibility of radiotherapy to this area. They are worried that if the tumour damages anymore tissue, I may fracture the hip and even worse end up needing a hip replacement (god forbid, I've seen how these sort of operations can affect younger people).

They have also advised that I start on another chemo asap (Navelbine) so when I see the UK Onc next week I'm going to have a lot of sweet talking to do.

Meeting with Dr Jacob

Had some infusions today - HEPA metz, Selenium and something to boost my iron deficiency.

Meeting with Dr Jacob this afternoon. She says depending on the scan results we could be looking at a vaccine being made up from my blood to help fight the tumours rather than chemo which is obviously having a very negative effect on my state of health. Don't know a great deal about this at the moment but will find out more tomorrow following the scan. This all sounds like new technology. I think if there has been more spread then we will be looking at chemo again but she says if no more spread or even reduction (I should wish!) then they will be making up this vaccine.

Flying out to Germany

I rang the Leonardis clinic this morning just to confirm my reservations and to check what time the taxi would be arriving to take me to Stuttgart for the PET scan. Disappointingly, I was told that in actual fact the scan was going to be Thursday and not Wednesday as hoped. Which meant that I was going to have a great birthday!

Plane was delayed by an hour and a half and then when we finally hit the road in the hire car, it was absolutely pouring down with rain so we didn't arrive at the clinic until 8.30pm We went straight to the dining room and who should be sitting there at the next table, George Hamilton and Alana Stewart!

Just as I was unpacking this evening at 9.45 pm I got a phone call from Dr Drazynski. He works late!! Anyway he was asking how I was and if there was anything they could do for me this evening. I ran through a list of my aches and pains including the fact that I'm always tired and I have a regular pain in my shoulder which carries on down my left arm but other than that not doing too bad. He said that I should arrange a meeting with Dr Jacob for tomorrow.