Better when I am not thinking about it….

It’s been an up and downy few days. Ever since I got back I have continued to have head aches and whilst I don’t think there is anything serious to worry about I had to mention them to my oncologist.

I also mentioned this cough of mine. Prof Harris doesn’t think there is anything sinister in the cough but as expected says I have to bring my CT scan forward AND have an MRI scan. Boo!

I absolutely hate having MRI scans, mainly because I feel claustrophobic in the noisy tube. I know it’s not rational but then maybe it isn’t the fact that i am having a scan that scares me.

I completely understand why i have to have an MRI, I just don’t relish it.  Best to be sure though.

Saturday was a lovely day. I spent the day in London with my old school friend. We relaxed, had spa treatments and then went for a lovely lunch. Plans are already being made for the next trip…All the while I was there Pete slaved in the kitchen making foods that I can snack on and that are full of antioxidants. Love him.

I am struggling at the moment with letting you know how I am feeling. I feel confused. I feel so up and down that I don’t know myself. One moment I am feeling great, the next I feel rubbish, mostly I am feeling rubbish. I hate having nothing to report because I am so self involved and all consumed with myself. I want to be full of energy and loving life. And I do to some extent but when you have niggly little ailments such as headaches, they can really bring you down.

I go to bed with a headache, and then I wake up having visuals, the start of a migraine. I cannot explain it. I have back pain where I feel the headache is resonating from. It could be absolutely anything that’s causing it. Who knows what I am having pumped into my body? All I know is that once I have the scan results if it’s not the worst, then it can only get better.

I am better when I am not thinking about things. I am still struggling taking my meds and supps and I am really finding it hard to focus on the big things. They are more important to me than anything else. I just need to remember that.

Day one of our trip to Switzerland feeling nervous…

The day started with my cat sat on my head licking my forehead. What a wonderful way to wake up! We headed to terminal five and caught our flights, then hire car to the hotel in Bussigny-pres-Lausanne, which will be our home for the next week. Thankfully the hotel is lovely (our room more so now we have a bath!)

I felt really nervous this morning. I’m finding it really hard to contain my feelings despite using breathing exercises. I feel emotional and tired. I’m physically over the sickness bug I’ve had all week and happily eating. We decided to be decadent and eat smoked salmon, drink champagne and do some luxury shopping… that calmed my nerves!

Now we are settled; lap tops set up, Wi-Fi connected and ready to go.

We are going to do a reccy and I think another early night. Tomorrow we are going to investigate the area and enjoy our weekend before the clinic at 9am on Monday.

Au Revoir!

Unpacking and packing again ready for Germany trip…

I’m back home again. I left mum’s this morning to beat the Saturday shopping traffic. I arrived to an empty house and have been pottering until my man arrived home.

I have been unpacking and re packing again. Tomorrow we head off at some ungodly hour to get to Heathrow for a flight to Germany for my next round of dendritic cell therapy and gamma delta therapy… (Hoping the lab work is good this time and Pete’s cells can be used.)

This wouldn’t normally be a problem but as per there is always a spanner trying to get in the works. This morning it has been reported there are huge issues with flights due to a technical issue at Swanwick traffic air control. There have many cancellations. Oh well I guess we will have to wait and see. At 4am tomorrow I will have to check online and go to the airport. If it looks like it is cancelled then we have to hop in the car and drive to Germany. It’s not like we can afford to miss out on the treatment. The vaccinations will be ready and if not used we will still be charged for them.

Usually I would be getting up tight about this but we have been in this position before, last year when flights were cancelled due to ice on the runway. Luckily our flight went anyway.

The other reason why I am not getting uptight is because I am actually feeling a bit run down and tired. I find it hard to believe I feel this way after having such lovely days at mum’s but I didn’t sleep at all the whole time. I simply do not sleep when I am not with my Bear. Sad but true.

I awoke to a sore throat this morning and now I have a sniffly nose. As soon as I got home I had a ginger and lemon shot and have downed a huge glass of green juice consisting of cucumber, celery, cavalo nero with green powders, e3 live and flaxseed powder. I am trying to fill my body up with extra goodness. I already have my pyjamas on and have decided I will be resting on the sofa this afternoon with a movie and tonight the TV is going off early and I am going to try and sleep at 8pm.

I am as always a little excited and apprehensive about going for this treatment. I have such high hopes and can only hope it helps me fight and be stronger. All I have been thinking recently is that my body can beat this.

A good friend of mine who I have got to know through having canSer has been keeping in touch recently and has been told that his canSer has reduced by 80%. He has questioned his doctors on seeing his CT scans as to know what they are interpreting. Because he has canSer near his spine and they are unsure what to do next treatment wise he has been granted a special CT scan.

This is what my friend Wayne said; how do they diagnose from such poor images and how much is open to interpretation?

Well now New CT scan technology can provide very detailed HD type views in 3D of all organs and even shows detailed images of arteries etc … yippee 🙂

 

This scanner is the ‘Aquillion ONE CT scanner’ these are not the CT scans used as a general rule in most hospitals but there are not many of them around.

Please read more below;

 

http://www.healthscanlife.com/body_scan_technology.html

 

I have always had issues with CT scans and I am always wondering what they are interpreting and would love to go down this road. It costs £1500 to have privately but they do offer it at the Royal Marsden Hospital. This has got me thinking and I may now ask if I can have one too. I don’t want to miss out! Ha ha!

Right I’m off to watch a bit of rugby and Harry Potter. I have everything crossed that everything goes swimmingly tomorrow.

European tour- days one to four

We’ve had a brilliant few days. Driving all over Europe never gets tiring. Not for me anyway! Pete doesn’t seem to mind either. This weekend was spent walking and taking in Amsterdam. It’s not a place I’ve ever really had a desire to go to but I would highly recommend it! Unsurprisingly the red light district and the cannabis coffee shops aren’t why it is so appealing! There is so much to see and do and the coffee shop culture is lovely. Pete did some research and we hunted down many watering holes that had a lot of history from the oldest to the famous frequented by Rembrandt. The only down side to the weekend was the state of our feet! They are very sore despite wearing apparently comfy shoes.

Yesterday we made our way from there to Duderstadt stopping on the way in Munster. Pete lived near Munster as a child so was intrigued to see if he could remember it all. We discovered an authentic German eating house and put a big old smile on Petes face by having a hearty German meal.

This fuelled him up ready for the next leg of our journey to our usual hotel for the next three nights. Knowing Duderstadt as being a very sleepy town we were hugely surprised to find it heaving with people and stalls. Apparently we had missed the Apples and Pears Festival which is an annual event here. We did manage to have a quick scour and take in the atmosphere before ey all packed up as well trying some of the local delicacies and delights!

Arriving at our German home it was such a pleasure when all the staff seemed genuinely pleased to see us. As usual the room is great and we came really prepared with movies on a USB stick. It’s great staying in a hotel but sometimes it is nice to have home comforts so of the next three nights we are able to watch a movie all tucked up in bed with a cup of tea.

We had an early start today with an appointment for both of us to have our bloods taken. They have to test my blood before doing leukerphresis tomorrow to ensure I dont have HIV etc. They did the same for Peter but also took 200mls of his blood as he is providing his gamma delta cells to me.

Now that’s done we have time today to mooch, do some work, write some emails and meditate.

I stupidly forgot my medication dispenser full of my supplements. They are safely with the hotel in Amsterdam. I am having it posted to here… But what an epic fail!I simply keep forgetting things!

I’m having a lovely time and just hope it stays that way.

Back from our exciting European tour…

This is the longest I haven’t blogged before but it has been a busy week. Having friends over last Thursday our little trip and ‘holiday’ started with a lovely meal that evening. Friday morning we had a really early start to the Eurotunnel hoping to hop on an earlier train. Sadly it was ultra busy and we didn’t get to France until about lunch time. We decided this time for our visit to Germany for my treatment that our friends could come too and we could make a little ‘holiday’ out of it. Of course the trip took many hours in the car and I was happy for someone else to be navigating!

We had a day in Brugge where we took a horse and cart ride and climbed hundreds of steps up the clock tower, ate chips and mayonnaise (apparently that’s important in Brugge) and drooled over Belgian chocolate!

The next day we drove to Reims the champagne region in France. Here we went to the Notre Dame cathedral and took a champagne cave tour… oh and drank champagne!

The day after we took a long journey into Germany and stopped in Heidelberg a bustling touristic town and had a break in the sun (albeit fleeting) then we cracked on our way to Duderstadt where we would be for the next few nights. There was a small hiccup as the hotel didn’t have our bookings but luckily they had two rooms for us… phew…

During all of this there was plenty of banter and many laughs. Pete seemed so happy touring around and didn’t once get tired… bless him.  During our visit to Duderstadt we showed our friends around the local town and we made use of the spa… bliss. We travelled to the Harz Mountains, ate German sausage and went back to the river that Pete and I found last August. It seemed different though this time. It was incredibly peaceful with little movement and very little water. Many rocks were exposed so we decided to climb across them and have a little explore. It was here that all the excitement started. I noticed that another part of the river seemed much more energetic than where we were and then I noticed that it had gotten really noisy where were standing.. Thinking nothing much of it we heard someone shout from above but didn’t understand what he said. Then Pete noticed that water was rising and that the channels we had crossed were filling up! Making a dash for it across slippery rocks we made our way back to safety but only just. Pete got a little caught up in it and wanted to save the camera rather than himself! It was exhilarating but scary at the same time! Right before our eyes the river started to fill up. Then the rain came and we got soaked. It was moving being back there again after the year we have had… Pete and I had a cuddle and soaked up the atmosphere of our little special place.

Treatment went well as usual. Dr Nesselhut senior was on vacation so we saw his son Jan this time. He said that since I have been having two injections each time they will run out of my cells and serum to use after my next trip there. Because they hadn’t planned in advance I couldn’t provide any new serum there and then as they needed to do a hepatitis blood test again therefore I have to pay an extra 300 Euros for a donor serum. There are pros to this apparently. It seems by having a donor serum means they have different antibodies which could be very effective when trying to fight infection and of course canSer inside.

I have booked for August as I will now be going Bi monthly. They advised against monthly as this could over stimulate the cells in my body therefore creating canSer and seeing as it is working bi monthly is the way forward then this may be reduced to every three months. They have advised me that I am to provide more cells when I go back in October. This means that I am to have leukapheresis (remove all my white blood cells) all over again. Now I know what to expect I am little nervous! But I have plenty of time before that.

After our two days in Duderstadt we made our long journey back. We stopped off in Brussels the night before last and that should have been a lovely little evening in the city checking out their nightlife. The traffic however had different plans. Our seven hour journey ending up taking eight hours and all of us left feeling very fractious when our sat nav kept changing its mind. Sally Sat nag as I call her let us down… I was actually shaking with stress from it and Pete’s head was going to explode. Luckily for us Pete has a natural homing pigeon programmed into him and found his way round the city despite Sally Sat Nag.

We have driven something like 2000 miles in five days. I felt a bit bad for our friends who were really looking forward to a relaxing time away… I guess it was in many respects… sat in our car driving across Europe! We certainly squeezed a lot into a few days and it was a lot of fun.

I also made the most of our time away by breaking my dietary rules. I ate meat, I ate sweets and cakes and drank alcohol and as fun as it was at the time I feel rough. I did eat plenty of garlic though as mentioned in my previous post. This pleased everyone in the car for the last five days! Ha ha! My tummy has been in a state and I was so pleased to be back on my juice this morning. Yesterday we went shopping and bought a trolley full of veg…. mmmm. Oxygen rich foods that will cleanse my polluted body which has clearly put on weight.

Once we got home we got our lives back in order and Pete is now back at work and I have been back working with my clients. I love normality and I love coming home. Kitty has been ultra affectionate too. Leaving her with Aunty Sarah must be making her feel loved and safe. Normally the cat can be very feisty and weird on our return but she sat with me this morning during meditation, yoga, exercise and whilst I was having my heat and air. Bless her.

I have been feeling mentally a bit weak recently. I am happy and positive but I have been having confused thoughts too. What I want is to be told that I can be canSer free. I know it shouldn’t matter if it’s said to me or not as it’s up to me to keep that thought process but I guess I feel a bit beaten at times when doctors simply say that once canSer has spread from its primary site to other parts of the body it is incurable. I just find it hard to believe. I have read so many stories of those that have done just that; had incurable canSer and no longer have any sign of it in their bodies. I don’t know why it’s bothering me now though. I want to feel that I have a future and can plan my life for many many years…. I know it doesn’t matter as no one knows what tomorrow may bring but for all those with children you plan your life to bring them up and give them the best life you can. You never imagine that you may not be there for them one day. Life isn’t like that. I want to be living for 40, 50 more years well and happy. Its pointless thoughts but never the less I am not in the position that I was two years ago when I had the chance at being fully canSer free…supposedly.

It makes for planning your life and what you want from it so hard. Everyone rests easily or in ignorance that they will have their retirement plan and wherever they want to be all planned out. Most of the time I am like that now but I feel the nagging knowledge that at my next scan everything could be different. Pete just says to enjoy now and not think about anything else but my life has always been about the next thing otherwise what do you do you every day? What’s the point of working and doing courses if you live day to day? I think I need to work on my head and what really makes me happy. Maybe I am forgetting to be thankful and grateful and just really happy to be alive and well right now. I get a bit lost not having any major plans. And always being good and thinking about my diet and making sure I exercise although being really good for me sometimes I just want to forget it all. Just for a fleeting moment. What I need to do is actually just forget that I have a chronic disease. It’s by someone telling me that I have it that I know about it. Ignorance is bliss and it would be so good to not know….sometimes…… I need to read some positive books. Hey ho…..

I have had the loveliest clients in today. They have all given me such a big kiss and cuddle. I feel very loved. It makes everyhting semm worthwhile.I can’t wait for my Bear to come home. More cuddles. X

 

So I have booked flights, hire car and hotel all ready for it….

My second day of working and I love it -again! I really cannot wait to have more time to work. It sounds mad doesn’t it? Most people are normally saying they can’t wait til they don’t have to work so much but for me I have worked so hard being self employed and building my clientele that it was a hard decision when I decided that I had to stop working- firstly because of the chemo and the reduced immunity it causes; so working up close and personal with people wasn’t ideal. But now I spend so much of my time trying to stay well – I love it- don’t get me wrong but I miss the feeling of pride when clients love the results of the treatments I offer. Gives me money, obviously, and also a feeling of purpose. One day, I’ll be back full time. Anyway I have now ‘broken up’ for Christmas! Ha ha!

I have had confirmation of the appointments for our next trip to Germany. So I have booked flights, hire car and hotel all ready for it. Efficient.. that’s what I am!

Since I have been taking the chemo drugs I have to eat at least 30 minutes before taking them so I have now found my perfect breakfast. Quinoa with warm almond milk or hot water with chopped hazelnuts and cinnamon sprinkled on top. It reminds me a bit of mums rice pudding.. mmmm. Great way to start the day, hugely alkaline and quinoa is the only food with all of the essential amino acids in proper and adequate amounts and proportions for utilisation by the human body! So even more perfect- if that’s possible. That’s my tip for day.

I want to thank all my lovely ladies for the kind words, cards and prezzies I have received! I can’t wait for Christmas day. smiley-wink.gif

Bear isn’t home til later this evening so I’m going to detox in an epsom salt bath and have sweet potato curry for dinner. (I talk about food a lot don’t I? A proper little German girl- Pete says smiley-laughing.gif)