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.

Flying visit to Duderstadt….

Side effects have really been getting me down the last week. At least that’s what I hope they are. A constant headache and that bloody nagging cough.

I have completed the il2 round 6 and the new imm101 jab has been gradually getting bigger and had now decided to get oozy.

The weekend was lovely with friends visiting but prior to their arrival I just felt rubbish. I whined and moaned and despite wanting to do some gardening jobs I got myself on the sofa under the Bears orders.

The problem with ailments is never knowing for real what is causing them. As with all canSer patients their minds will run away with them. I have now decided to be logical and really think back as to when all these annoying side effects started. I think they could be an accumulation of things over the last few months. I also thought that the nausea I had been experiencing could be down to them too. I think I feel a bit better with the knowledge that although I feel sore throated and tired that it could all just a sign of things working.

We got up at 4am today to get to the airport for our morning flight to Hannover. It’s been about ten weeks since we saw Dr Nesselhut last and I am ready for this round. I do know that tonight could be another night of fevers. My body has been going through it with all these infections and immune stimulating things going on.

So today I have had zometa, il2, hyperthermia, Newcastle disease virus and air. A well as this I asked for my bloods to be taken for my next visit. I feel fine right now, if a little tired but I am ready for tomorrow’s stint too.

Pete is here with me, as usual and I am so pleased he is. The roads were horrific getting down here with traffic and roadworks. I aim to have an early snuffly night in the ultra comfortable beds at the Zum Lowen plus we have been given a room with a mahoosive bath! Whoop… A big soak in the tub! Falala!

We finish tomorrow at about lunchtime but our flight back isn’t til 9pm…..

Until Wednesday…. Xx

It keeps life exciting, eh?

I honestly don’t know where the time goes. I was thinking the day before we left the villa that I was going to leave a lovely parting message and my thoughts on the three weeks that had passed.
But before I knew it we were on the road travelling hundreds of miles to get back home. It is now Thursday and we returned on Sunday. I have been thrown back into work (my doing-I booked up straight away) and the domesticities of life.
Despite having a washing machine there I still had many loads of washing and have now cracked the pile of ironing.
Then I was off to London yesterday to firstly visit St George’s hospital to collect il2 injections then hopped on the tube to the London Clinic to receive the IMM101 jab.
It is the last of the il2 injections and part of me isn’t sad about it. I performed the injection as instructed and this time took lots of paracetemol to avoid any side effects. It worked to a degree… Although in the middle of the night I felt hot and very uncomfortable. I decided to take more paracetemol but it didn’t really help. I had an unusual sensation on my arm further down from the jab that I’d had that day. I had a little rub of it and it was an old vaccination site from when I visited Dr Nesselhut. Not thinking at the time I ignored it but now I am conscious I recall my heart rate being elevated and I was having slight trouble breathing… Um, alarm bells!? I think I might have been having an allergic reaction to either or both of the injections I’d had that day. It was very similar to how I felt at Dr Nesselhuts that time I became allergic to the gamma delta cells, but on a lesser scale. Thankfully.
I remember my kitty jumping on me at what I thought was about 3am. I thought, ‘How did she get in here?’, and then looking to the other side of the bed saw that Pete was already up. I was so confused.
I feel pretty drained right now and like I am fighting something. Working today is helping take my mind off of it. I have another injection to do tonight of the il2 and just need to get a cup of ‘man up’ and stop moaning.
I feel all I do at the moment is moan about how under par I feel. I have to admit I haven’t felt 100% in ages. What with nausea and stomach aches, flu like symptoms and this blood cough which is driving me mad!
It’s hard not to think anything of the cough. It is still there and makes me feel rotten. Only because it catches me out. And it’s a non-cough. It’ not producing anything and it really doesn’t feel like an infection. Well I hope. I have been chatting to a virtual friend who says she has been experiencing aches and pains. It is so hard living with canSer and not think the worst of every niggle, cough and ache.
What else has happened this week?
I have been in touch with the London Care Oncology Clinic this week trying to firm up an appointment to see someone so I can have mebendazole prescribed. I have to get a referral letter from Prof Dalgliesh who is on holiday at the moment.
I have also been in contact with a doctor in Wimbledon who offers intravenous treatments such as sodium bicarbonate and salicinum. I had to send a letter of consent from my oncologist, which I have done. I have asked a few more questions before I book an appointment but I don’t seem to be getting a reply.
I sent Prof Vogl another message as he always seems so keen for me to go there and crack on with his TACE treatment. I asked if I should wait until my next scan. Typically he says that I should get there ASAP… Hmmmmm
Monday, Pete and I fly to Germany for my next round of treatments. It has been about 10 weeks since I was last there so I am quite keen on getting some sort of boost. I also need more scorpion venom and Nesselhut is the man I buy it from.
So as usual a lot on….. But it keeps life exciting eh?

Four days left…

I’ve had a lovely morning so far… I’ve done my morning rituals best I can whilst being away from home. Coffee enema, nebuliser, taken all meds and supps and more.

I am feeling pretty good. I am still avoiding green juices however the last few days I had an epiphany. In the place of juice I had been having bicarbonate of soda, lemon and olive oil water. Then one evening in St Tropez I felt overcome with nausea. Not very classy running to the toilets and throwing up!

Then I realised I bought a bottle of apple cider vinegar with me and had barely used it. Knowing the amazing benefits of Apple cider vinegar I have been having that with my meds and supps instead. So far so good. I don’t feel nauseas and I don’t have stomach upset… Maybe that’s what I needed. Apple cider vinegar is very alkalising and calming on the digestion.

I have continued however to have migraines. Now the neurotic part of me thinks, Oh God, could this be something more sinister. Then I think of all the triggers that could be setting them off and the list is extensive, caffeine, red wine, heat, sunshine, eye tiredness, stiff neck, lack of sleep, dairy products and more.. I can tick off all of those as possible factors to my head aches. So telling the neurotic me to back down then once I get home and realign my life then we shall see.

I made another batch of GcMAF yoghurt yesterday. Because of the heat here it’s process is complete much sooner than at home. This morning it looked like set yoghurt and smelt amazing. I am really loving this stuff. It’s in the fridge now and I will test it later with some berries.

Yesterday Pete and I decided to try something I had always wanted to do.. Paddle boarding. I was really nervous.. Lets face it I’m nervous about anything new. I wasn’t given any tips or assistance by the French guy renting out the boards and was pushed on my knees off into the sea.. Argh! It wasn’t great because he said be careful not to fall onto the rocks below! With that fact and the very wavy sea I was a bag of nerves. I whined and moaned as I tried to control the paddle board with my oar. Being panicky I failed to listen to Pete’s instructions and whilst drifting into a moored boat decided I would go back to shore. Poor old Pete was trying to help but I just didn’t get it. I watched a while from the shore then Pete came and got me. I had another go and this time I actually got up onto my feet and… Paddle boarded! Yay! However I wouldn’t say I was entirely happy. I really wanted to be able to jump off and on the board but because of the rocks was petrified…. Not ideal. I need a lake with no waves, tides or current. I need a shallow pool to jump off into….Where will I find that? I’m pleased I tried but now really want to master it.

 

This morning I had a message from a friend who has asked me to speak on a night her friend is hosting. She will be launching a calendar ‘inspirational women’ and wondered if I would like to say a few words. I will be announced as one of the inspiration speakers.. The calendar has been promoted on the Lorraine Kelly TV programme and Anne Diamond’s radio show. Gulp….. I know I should but I am such a wreck at speaking in front of anyone! I have been assured that it isn’t a big affair and my friend said I have a story to share…..

 

Thoughts have started to go back to home. I am already thinking about packing and the journey ahead of us. I have to say I am going to miss this place…it has been the longest three weeks of my life! It feels like so much has happened. When mum left on Tuesday it felt so quiet here. She was such a great support. I know I couldn’t have driven that beast of a car without her. She helped me clean, do washing and organise lots. (Yes I did cleaning and washing because I had friends arriving- a girl has to have standards you know!) it’s the first time I have spent two weeks away with her. It was lovely.

 

I am so pleased we invited many of our friends and family to stay. It would’ve been too big with just us here. It’s been so lovely having such happiness, laughter and joy surrounding us. There have been times when I felt frustrated and a bit lost but then spending all your time with people can be suffocating.. But how quickly that changes when they are gone.

 

So what now? I am going to really enjoy the next four days with my man. Next week is all planned and I aim to transition smoothly into my rituals back home. I hope to feel back to normal soon. I have a life coaching session booked for me to get focused and find my mojo again and in three weeks I will be a fully qualified health coach. Boy that year has flown by! My main aim is that I want to help other people have a better life…

I am looking forward to the autumn and the rest of the year ahead.

How is it looking for you?

Xx

The Bear is back…

Another five days have passed. Time flies when you are having fun! The week flew by actually and I have had more friends arrive and my step son leave. And at last the Bear is back! It’s been an interesting week. I am not the most confident person on the roads abroad and this last week I have been forced to drive, if I actually wanted to leave the villa. I would have been fine driving my little car that is parked outside my house in England but I have been driving Petes car. Parking has been an experience. I was happy for Pete to return yesterday to take over the driving role!

Our friends from Ireland are with us now for a few days. It’s so funny seeing them here. Obviously we don’t get to see them much but taking every opportunity to catch up is brilliant. We are so relaxed, chatting, laughing and loving. Their daughter Marsha is gorgeous and brings us so much happiness. I love her passion for shopping…. A true girly girl!

 

In the last few days I have abandoned having green juice. I am taking my meds and supps with lemon, bicarbonate of soda and olive oil water. This is much better and I am no longer nauseas. It is also funny how my diet really has changed. I am indulging in everything and anything I want. I am not being lazy. I am not feeling guilty. I am simply going with the flow. I do think it has having a slight adverse effect on my body such as diarrhoea and headaches but I love checking out the menu each evening and thinking, pasta… Yes why not. My friend Patricia said maybe my body is healing and letting it have what it craves is a good thing. I have spent so much time in the past few years doing the ‘right’ thing. I don’t think it will hurt doing what I feel for a while.

I am now going into my, wait for it, third week here in the South of France! I know! Three weeks! I may not be sleeping because of the heat, I may have mosquito bites itching me and I may be putting on some weight… But I feel so free. I have never stayed somewhere like this. I sometimes do my rituals such as enema, meditation and yoga and sometimes I don’t. Isn’t that great? Doing what ever I feel like doing.

What I do religiously is sit in the sun… I love the sun. In fact I have changed colour somewhat… I do love a tan. So I guess my vitamin d levels are quite high. It’s ok though.. I am preparing for the dark winter ahead.

I do have the odd thought about home. I am still planning treatment for my return. I text Carol the nurse from St George’s as I still haven’t had a reply about the next round of il2 injections. Carol, bless her, replied from her last day on holiday and said that if I didn’t hear from her on Thursday to contact her. I’ve text her again. I still have time to organise.

 

I still have the cough, although annoying, Pete says he doesn’t think it is getting any worse.

 

When Pete went home he picked up the recent copy of Prima magazine. Why? Because I am in it! I’ve attached a few pictures with the text. It’s so funny seeing myself in a magazine.. It was also very nice the other day to be mentioned in an interview with one of the lady’s from Nicola Jane mastectomy lingerie. My fifteen minutes of fame! Haha!

 

So what is happening today? Soulful Sunday.. Fresh foods, plenty of sunning myself and plenty of time to be grateful. The main theme of the day… Love.

Tunes are playing by the pool… I am  having lots of cuddles with my Bear (well I need to catch up on the last weeks worth that I missed!) and then tonight we are off to St Tropez…. Darhlink!

 

Hope you are all feeling the love today.. Happy Sunday!

Xx

What to report from my floating lilo?

It feel like it has been ages since I last blogged. I’m not ignoring everyone I am just simply having too much fun living and relaxing and being away from home and out of routine. I’m into my second week away and it already feels like I have been here an eternity. Friends have left and more friends and family have joined me.

Sadly Pete has gone home for five days. He has to work. I am so lucky to be able to be on holiday but it feels so weird that Pete is not here.

What is there to report?

I have been battling with my meds and supplements still. But think I am conquering my nausea by eating something with them. I have had a few days break from green juice.

Sleep is still really hard. The other night it was very very windy and it felt and sounded like the house was going to fall down. The heat is crazy here but I am soooo not complaining. It is now September and the sun is still shining and the heat is immense.

I wish I could sleep better but at least I do not have to anything much during the day. To be honest I could sleep all day if I wanted!

I am not writing this to make everyone jealous. This is a once in a life time for me. I have never stayed in one place for this long and it feels great. I will want to go home though. Just not yet.

I would like to feel healthier. I don’t like having stomach aches, head aches, nausea and more. A lot of how I feel is down to anxiety too I think. What have I got to. BE anxious about? Nothing really but old habits die hard.

 

Whilst here I am still doing my weekly module of the health coaching course. Funnily enough it has been focussing on the importance of sleep. Oh sleep… How I miss you. I miss cuddles with my Bear and I am counting down the days till he returns.

I have been getting really brave driving here and yesterday had the wing mirror replaced. For a short moment there it looked like it wasn’t going to happen but thankfully the lovely French mechanic sorted it for me. Phew. So now the car is as good as new but our credit card balance has been hit hard. Boo.

Today I am going to try and eat well, stay well hydrated and rest. I have been doing lengths of our little pool here. Although not as many as my friend. She did 140 lengths this morning!

 

Last night I had copies of letters emailed to me by Pete. They were letters from my oncologists sending update letters to my GP. It was quite nice to read that they think things could be going in the right direction but that my next scan in October will be one to confirm that.

Prof Harris also wrote to say that he couldn’t give me mebendazole but gives his consent for me to proceed and have that treatment if I can get it. He also said he doesn’t believe a PET scan will be any better than a CT scan but if that is what Professor Dalgliesh would like then he will happily organise that for me.

It seems that the oncologists are all very agreeable at the moment! I like it!

 

Lying here getting browner by the day ( I do love a tan) has given me time to think about the forthcoming months. There is a lot to look forward to. Social events, trips away, treatments and more. I am even going to a spa at a London hotel with my old school friend when I get back. Not that I need pampering.. But any excuse for a good old catch up and gossip.

I have emailed Professor Vogl informing him of my current status and asked his advice. He is also so quick to reply and his emails do make me laugh. They are so short but to the point. He is very keen to get me to go there and have a scan and then if I want and need have TACE immediately.

I am not sure about this as I am in Duderstadt the week after I return from France. I may try to tie in after my scan around October time if we can make time for it. I’m obviously hoping I don’t need to go there but I have to say I am quite intrigued about meeting the man himself.

 

So my iPad just overheated whilst I typed this outside. I have now taken my iPad out of the fridge to finish off!

 

I feel so grateful and so very lucky to have this life in every way. I am so very grateful that despite my annoying niggles of nausea, diarrhoea etc, that I actually do not have any canSer symptoms. I look up to the sky from the lilo I am floating on at the deep blue sky and think to myself, don’t ever let this end. This feeling of calm, happiness and serenity. Give me back my Bear and then I will be complete.

 

Xx