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The fact is 'things' don't make you happy...

by Claire14. July 2014 14:18

 

My trip to Tooting was a doddle on the train last Thursday. I arrived nice and early and the lady who was meeting me had everything prepared. I packed my bag and got straight back on my way home again. Simplezzzz.

I started that evening with the first of three interleukin 2 jabs. I found a new little area on my tummy to inject and in it went. That night I started to feel headachy and flu like again. I didn’t sleep at all. I am so surprised that 3ml of the stuff has such an effect on me. I am not complaining!

The next day I did the second one and I thought I definitely won’t feel rough again... wrong! This time I took paracetemol to alleviate the symptoms and slept much better.

Since then I have also started on the scorpion venom... I know it sounds hilarious. I take 1ml under the tongue and hold it there for five minutes. Seems fine so far. It’s too early to know if it is actually doing anything. I am repeating it three times throughout the day.

Saturday was an exciting day... For the last fifteen years Peter has wanted to go to the Air Tattoo at RAF Fairford. I booked it for his birthday treat and invited some friends up from London. The weather forecast wasn’t great but we had everything crossed.

The day went like a dream. We watched the whole display in an enclosure with brunch included and the Pimms flowed. The sun shone and we were so happy we could see the aircrafts making their beautiful patterns in the sky. For us the Red Arrows are always the best... well they are British after all! Pete had a small tear... Bless him. We both said a big thank you to the Universe for the day being so lovely.

                                          

Yesterday we said goodbye to our friends and headed down to Brighton to our boat. Sadly we had to pack up our belongings on her as she is being sold. It isn’t complete yet but hopefully it will go through. Reluctantly we are selling because we need the funds for more treatment.  Pete was devastated and it was actually very emotional being there and seeing how wonderful she is. She has looked after us through some turbulent times and we have laughed, danced, sang, had barbeques, cuddled up and cried on her in the last four years. She has been there the whole time I have been diagnosed. It’s the only place Pete sleeps like a baby in her womb-like cabin. It’s like she has a soul and we felt like we were betraying her. I felt terrible. I have never adapted to boating like Pete so for me I thought it wouldn’t be so hard to let her go but actually I felt such sadness and guilt combined.  I hate the fact that Pete has to let go of something he loves so much. But he says he loves me more and will do anything for me.

The fact is ‘things’ don’t make you happy. We have many memories- good and bad of Waterloo Sunset but ultimately we have more freedom and more new experiences ahead of us. With great sadness we left her behind all ready for new adventures with someone who cares as much as we do, hopefully.

Last evening was the World Cup football final; Germany against Argentina. As you know we are huge German fans. I had crossed everything in the hope that they would win just so that Pete’s day would improve ever so slightly.... And they did! Yay! There was a least a little smile on the Bears face before bed.

 

                                                  

Today is Bears birthday and I can’t wait for him to come home and open his presents and have a wonderful evening together. He may be older but he gets better with age and more loving and caring, if that is at all possible. Happy Birthday My One! XXX

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Triple Negative

I'm back!

by Claire10. July 2014 16:37

I haven't blogged for about a week and it hasn't been through laziness or because I have been having 'moments' but because I have been away. Again? I hear you cry... Well yes actually.

This time we decided that we would combine our Germany treatment trip with a road trip though France and Germany and we smuggled a little tag along with us.. My mum.

She hasn't been to Duderstadt before and she hasn't been away for nearly two years so thought it would be a nice treat plus it was her birthday.

The three of us set off on Friday and you'd think this end of the journey would be easy.. We had a few near misses and one included a caravan being towed that nearly wiped out on three lanes on the motorway! 

Get me to the Eurotunnel quick!

Our first leg of the trip was a few days in the Champagne region and we stopped off in Reims for a few glasses of the bubbly stuff and lots of walking. We did a cave tour of Veuve Clicquot and can now say we have some more knowledge on the expensive fizzy stuff we love so much (so much we have dedicated a bar to Champagne in our house!)

Our next leg was a stop off in Bonn, Beethovens birth place. We arrived quite late in the day but still managed to walk for hours and then we stopped off for some traditional German food. Mum had to try schnitzel, bratwurst and sauerkraut for sure! A weird thing happened here.. Out of the blue the weather changed almost within a minute from bright sunshine to a tornado! Umbrellas and tables were flying down the street as everyone tried to get indoors without getting soaked. This is when the weather in Europe changed for a few days.

The next morning we got up early and drove another four hours to Duderstadt. My treatment started this afternoon and I had a combination of zometa, il2, oncothermia and Newcastle disease virus as well as having bloods taken for my next visit. 

After Pete and mum had checked into our hotel and I had finished my treatment we paid a quick visit to the lake whilst there was a break in the weather, and had a cheeky ice cream. Ok I know it's not conducive to my normal diet but I was on holiday... Sort of! And a little of what you want is good for you. 

One night in Duderstadt, a small lie in and after a great breakfast we had a little time to spare before my next round of treatment. I took mum to the spa at the Zum Lowen. There we had a splash in the pool, and basked in the Salt Oasis, steam room and sauna as well as scrubbed our bodies with ice and showered in tropical storm showers...

Next round of treatment was a bit of a repeat of before except a few things but on my way in I bumped into a familiar person. I knew the voice, well the accent, and put two and two together. I know of another canSer blogger who goes to see Dr Nesselhut and has been living in Germany having treatment for some time now. His name is Peter Trayhurn and when I heard his Australian accent I introduced myself as I was going to my appointment. 

Immediately we started exchanging information and asking what treatments we were having. We agreed that if there was time we would have a quick cuppa before my vaccination appointment half hour later. I told him to look out for my hubby and mum.

After my treatment I walked back to the hotel and there they all were chatting away. 

What I loved about Peter was his confidence and his ability to see the positive in everything. He seemed really 'together'. A truly awesome guy whom I could have chatted to for hours and there still wouldn't have been enough time. We had to get to see the doc. 

After we all said our goodbyes and hugged we got back to the clinic where ironically we waited for an hour to see Dr Nesselhut. He is worth the wait.

As per, he was very smiley and lovely. He showed me a picture of my monocytes and dendritic cells. He said they are all looking good. As there were plenty of dendritic cells I had half intravenously and half intradermally. Next I had the antisense injection. The one that I should have had done last time. The doc said I shouldn't get any side effects from it. So in went that injection too.

Next we got chatting and he told us how he found out a website in China have said that they have a Dr Nesselhut as their scientific director. Doc said, it isn't him, they have completed lifted his name! Wow, that's scary.

We then chatted about one of his patients who had a really good result recently and found out she had been taking the same stuff that Fidel Castro has been taking to stay alive and well... Scorpion venom. You can't make this stuff up! Seriously! Funnily enough Pete had already heard about this but hadn't been able to locate any of the venom... Until now! 

We left Dr Nesselhuts with my next appointment booked and a bottle of Scorpion venom which I need to put 1ml under my tongue and hold it there for five minutes four times a day. It wasn't cheap. Well nothing ever is! But when in my shoes you are almost willing to try anything. There shouldn't be any side effects but we will see. I haven't started yet. I will maybe tomorrow.

We all hopped in the car and started our journey back across Europe. Our destination for the night was Cologne. Unfortunately the weather was atrocious. Driving conditions were hazardous and almost every road we went on had accidents. Poor old Pete. He is so good and really does anything for me.

He was so relieved when we got there and finally checked in. We were quite excited because that evening was the Germany v Brazil semi final of the World Cup. The energy was bristling all over Germany. We went to one of our favourite restaurants in the city and were lucky enough to be seated in front of a TV. Luckily we had prior planned and prepared and bought German paraphernalia. Our neighbours kindly drew the German colours on our cheeks too!

If you are not a football fan then you may not know that German totally nailed it by winning 7-1! Honestly you can't make this up either? It was amazing to be there and so much fun! It's one of those, where were you when.....brilliant!

Another early morning the following morning. This was our final day and it was full of travelling. It didn't start well. The hotel we stay in has its own car park. You drive into a big lift. A bit like going into a car wash it tells you whether you need to go further forward, back or to stop. We got in fine, but for some reason the lift wouldn't accept us! Argh! We were trapped in a car park with no way out. After much faffing, technicians got in the lift with us and manually over rode it. Thank goodness. I had a terrible feeling of being trapped and never getting out!

The day was long and ever so hard for Pete. The weather was so awful with terrible visibility. I really felt for him. But despite the set backs we got to the Eurotunnel early. Yay! We could get on an early train... But then a train got stuck in the tunnel.. Boo..

We eventually got a train after having a little car party- A few cheeky small bottles of champagne later.. Well we have to make the most of our time! Pete then had another two hours of driving... I'm so grateful that he offered to take me by car in the first place but oh so pleased when we got home.

My day in the car you would think was pretty easy. It would have been had I not woken during the night with a fever. After the vaccination of dendritic cells in my arm, it swelled hugely and it gave off so much heat. Any reaction is brilliant in our eyes. Then during the night I felt hot, cold, achey and the soles of my feet were sore!? I put it down to the injections I had had. Again I wasn't upset because I want there to be a response but I felt blah all day in the car. I needed sleep and the pain to be gone. At the Eurotunnel I took pain relief and got into the back of the car and curled up for the rest of the journey home.

We had our last night together in our snug having French goats cheese and a glass of Bordeaux. I got tucked up in bed and had the best nights sleep!

Today I really could have done with getting things organised back here but it wasn't to be. I had to get up and get myself down to St George's hospital again. The next round of interleukin two injections were waiting for me.

This time I went down by train and I had a very chilled trip. I am now back home writing this and have a fridge full of organic produce. I am looking forward to starting each day with green juice, meditation, exercise and all my other rituals. 

We were sad to see mum go. We had such fun and times like that are priceless.

I miss my Bear already. He left for work and the gym at 5.45am and won't be back until later. 

I had a little moan about having to go all the way to Tooting today.. Pete reminded me I have one job and that's to get better. He says he doesn't always want to get up at 4.45am and go the gym then work but he does because he knows it's the right thing to do and he has to earn money for our life. Puts it in perspective.

 

Before I sign off, this lengthy blog Saturday my 3 friends, plus their friend and father set off and attempted to climb the Three Peaks in 24 hours. The whole time they were going we were watching our phones for updates and texting other friends to see if they had heard anything. After each peak my friends father drove them to the next peak whilst they tried to rest. They started at 5.30pm on the Saturday and climbed through the night. I was so scared for them. 

Well they did it with 45 minutes to spare! My Kitty's Climbers did it and we are bursting with pride. It was very emotional watching their video when they finished. 

Since then they have received lots more donations and when I last looked they were in the region of £4000! Their target was £2000. Such selflessness overwhelms me. One of my friends in particular had a real achievement as she did it with quite a few injuries after falling on her first peak. Bless her. They are all now on holiday and never want to see a mountain again!! Yeah yeah. Heard that before. Next stop amount Kilimanjaro... And maybe I'll join them!

If you would like to donate please click the link and leave a message. Thank you in advance!

http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=SamanthaNicholson

I've attached a few pictures of our five days away... Hope you like them.x

I won't leave it so long next time. My forearms are aching from the typing. Haha.

Ciao and light and love. 

Xx

 

                                     
                                             Sampling the Champagne.... Clearly..

 

                                                

                                              A true German supporter through and through..

                                       

                                                                Car party. Standard.

                                                   

                                                    Oh Dear... The Queen and her Corgi!

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Two years and I'm still going strong!

by Claire3. July 2014 12:04

Today is the anniversary of the day we got told I had only two years to live, that the canSer had spread to my lungs and it was incurable...

Well here I am fitter, brighter, happier than ever.

My life has been enriched by the support of so many people and my love for life and everything in it grows every day.

My hubby gets ever more lovely and my heart grows daily.

I am so happy I have made it this far but want to strive for the miracle of being canSer free and to be here for many more years to come. 

For anyone that finds themselves in my position, don't believe everything you are told and find the strength in your gut to keep going.

We, Bear and I, will be here for you and together we can prove the doctors wrong.

Light and love everyone...

Today's another day to be grateful... Another entry for my gratitude jar. 

X

                                

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Triple Negative

Time to heal myself....

by Claire2. July 2014 13:06

Yesterday I cancelled my pranic healing appointment. I had to go to hospital but ever since I didn't go last week as I wasn't feeling up to it I have been undecided what to do. Last week because I didn't cancel 24 hours prior to the appointment I was asked to pay. Ok this seems fair as everyone is running a business and I know far too well about people cancelling last minute and I too have a cancellation policy. But I don't charge because I ask people to be flexible with me and because of my circumstances and also I give people allowances. It most often can't be helped and although I lose out on the money and I could really do with it I think it's best to keep those clients than to drive them away.

I felt really put out by being asked to pay and maybe because I was a little under par last week I responded when I was told. I asked if they want me to pay for not giving enough notice then is it ok that I am left sitting there waiting for my appointment whilst the therapist runs overtime or hasn't turned up? What's my time worth? And let's not forget the time he didn't turn up at all. I travel a good hour by car there then back for the appointment.

I am not sure whether I was testing them to see how they would respond. They said on that occasion they would overlook the charge. Hmmmm.

I have had a feeling of change about me and maybe now is the time not to have so many healing appointments and rely on other people to make me better. I think I should be healing myself. Work on my being. I decided that I would use an app I have and spent half hour yesterday listening to some hypnotherapy and visualised healing. 

I think it is all too easy to ask someone else to heal you, but we have the ability to work on ourselves and although it is hard sometimes it is really worth it. It's like meditation. It doesn't come naturally, but with practise it can be a really useful tool to relieve stress and to become more mindful.

I have been feeling quite anxious recently when I go for pranic healing. The journey there is on the M4. Not the nicest of motorways. Then there is the waiting and the worrying if the therapist will actually turn up or how late he will be. For me, I like planning my day and knowing what I can fit into it. Running late isn't acceptable to me. I understand sometimes but to have to accept it every time can be hard work for someone like me. It actually made me laugh last week when I was contacted only ten minutes after I was due for my appointment. The therapist has only ever been on time once in ten months. 

The way that I was feeling when travelling there and the anxiety it caused waiting completely takes away the purpose of the visit itself. Pete said it is a waste of my time and money and it has an adverse effect on me. He is right. I do have more appointments booked but I think I will really consider if it is for me any more. 

 

Sometimes it is better not to have every treatment available and take a step back to consider what's right for you intuitively.

 

 

 

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A wonderful surprise to start off the week...

by Claire30. June 2014 12:11

Last week was supposed to be a week of chilling out. Under orders from Pete who cleverly suggested that avoiding close contact with lots of clients would be beneficial straight after surgery. I felt initially like I should work as I felt well enough but then I actually felt rubbish all week. Typically. 

I couldn't put my finger on it. I felt incredibly teary, maybe from hormones. I ached where I hit my head and my arm/ vaccination site was causing me issues at night too. I started the interleukin two injections Wednesday, Thursday and Friday and as Prof D informed me I did feel quite fluey at night. This didn't help sleep either. I just felt pretty miserable and off beat. 

I kept myself busy instead of sitting around which wasn't what I was supposed to do but it meant I could get things done and visit people that I don't normally get a chance to. In that respect last week was great.

But then I visited Ray, the old man that we have taken care of for too many years! You might remember me mentioning him. He has moved to a lovely, care home where he will never be lonely, without food or a doctor near by should he need it. Peter has been brilliant in visiting him regularly and unsurprisingly Ray is unhappy with his new home. It would be too much to ask for him to be grateful or happy.

Trying to help Pete last Friday I offered to pop in to see him. Pete was maxed at work and I wanted to do something to help the load at least. Well, I skipped into the lovely residence only to be met by Rays locked door and told to bugger off! How nice. He didn't realise it was me but when he did he seemed really happy to see me. It felt good and I was pleased I had made him smile. But this lasted about ten seconds. He realised he had an audience and proceeded to moan, make up stories and slate me and Pete for about an hour. Now I know old people can be that way but I don't think is any excuse for that behaviour. Reluctantly I told him I had to leave when he was pointing his finger at me telling me people don't like me. What can you do eh? I left feeling violated as I had sat there trying not to comment or defend myself. I was red and flustered and poor Pete felt terrible when I told him.

I got home and had some more tears... It must be hormones! It was ok though because soon I had a big cuddle inbound from the Bear. The weekend was chilled as we visited Pete's sister and then yesterday did some gardening. I felt really happy and could feel the cloud lifting.

We have tried to work out what people like Ray are trying to teach us and why they are still in our life. We have come to the conclusion that you can't please everybody no matter what lengths you go to.Then I saw this article this morning;

http://www.mindbodygreen.com/0-6934/Are-We-Meant-to-Meet-the-People-We-Meet.html

 

Today I am back to work. I have four new clients and I will be working into the evening. I feel better in myself and I am looking forward to working.

I had a great start to the day when I opened my front door to find a bunch of beautiful flowers and a card from client. She said that after wallowing in self pity all weekend she thought of me and that inspired her to pick herself up and get on with things. I am glad I helped give her a kick up the bum. Sometimes it's ok to wallow but moving on and getting on with things is the way forward.

The interleukin 2 injections have left quite itchy raised lumps in the injection sites on my tummy. This is a good sign that the immunity is responding. I so hope that it is being reflected inside. My next ct scan is booked for the end of July, so I will find out then.

Right, off I go to get started on lots of pairs of eyebrows! 

Light and love!

X

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Triple Negative

The scab and goop stuck to my bed... Gross!

by Claire25. June 2014 16:59

Didn't really sleep last night mainly due to worrying about waking up early this morning. Why do we do that to ourselves? I got on the road to Tooting ultra early mainly because I know how long it took Pete to get there last week when he was visiting me.

I arrived by 8am and my appointment wasn't until 10am. I guessed ghee time would fly catching up with Pete on the phone and having a cuppa at the cafe.

I checked into reception at 9.30am. It seemed like quite a small oncology department but was clean and new. I was greeted by a lovely nurse who seemed to know all the patients and was rushing around ensuring that the Prof had everything he needed. I was quite impressed. It's very interesting seeing how different hospitals operate.

I was seen about half hour late but this isn't anything compared to the Churchill in Oxford which has delays of up to two or three hours sometimes.

Prof Dalgleish asked how I was doing and discussed the vaccine site on my arm. It has been a week since I had it done and now it was hugely open and pusy. Last night I must have slept on it when it had a scab and was like a volcano. When I woke this morning all the scab and goop inside was stuck to my bed.. Gross. The volcano lump has gone and now I am left with a gaping hole like before. It's really sore and I aim to keep it dry and untouched.

Prof explained about the injections I was there to pick up and start administering. He has provided me with three syringes containing interleukin 2. I have had this many a time at Dr Nesselhuts. The syringes contain a tiny amount and I am to inject myself in the tummy every night for three nights. I may experience flu like symptoms but they will pass very quickly like a light switch. I have never experienced flu like symptoms before but you never know? He also told me that the vaccination sites on my arm may be deactivated and become very pusy again. Oh well that's the way it goes.. But he said that is great because it shows my immunity is really active. 

He said he doesn't really know what's going to happen. This is a trial of sorts and he mainly deals with melanoma. So we just have to wait and see. I told him that I have a scan booked for the end of July so it will good to see what is going on since the ablation and all of the immunotherapy. 

The idea is that the il2 stimulates my own natural killer cells. So that will enhance the ablation and the IMM101 vaccinations. 

He told me that he had a melanoma patient who had some lesions ablated and that the imm101 and il2 combined made the other lesions in his body die. I am not sure if he has more than one success but here's hoping so. He says he knows this works well in lung canSer patients too.

I don't mind being a guinea pig. I have been for two years I just had it combined with conventional treatments too. But from what I know so far from my last scan is that having just these treatments the canSer isn't progressing hugely and in fact some of the tumours were actually declining. 

I left with an ice box containing the injections and set off on my way home. There was plenty of traffic because of the Wimbledon tennis tournament. Oh how I would like to be there watching a game.

It took me what felt like ages to get back. I felt pooped when I got in so I grabbed a blanket and sat in the back garden doing some homework. 

This is where I am typing this blog from. It's nice, clouds to break up the heat and a slight breeze.

I am making my second batch of Bravo Probiotic yoghurt or in the process of it. I started it yesterday and it is currently fermenting. I have run out of the last batch and I am getting used to its funky taste. My kitty loves the stuff. She has been licking my bowl clean every day. Pete has even tried it and says he doesn't think it even needs sweetening of any kind. I definitely think it must be doing some good. I like to think my gut health and immunity are loving it.

I'm going to make some guacamole and a large mackerel salad for our tea then I'm not watching any football! I am putting my foot down! Ha ha! Oh who am I kidding.. I can't say no to the Bear.. I'm going to have an early night.

Night all. X

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Triple Negative

Thank you Universe....

by Claire23. June 2014 16:19

 I was discharged from hospital Friday evening! Yay! I was delighted to be going home as I just couldn't relax there. The food just doesn't heal and nourish one and the noise is so great that unless you are completely exhausted no one is ever going to sleep.
But that doesn't matter any more. I got home, unpacked and straight into my pj's. My bed was calling me. But first a green tea.. Ahh..


I slept really well, my first night of many to come I hope!
I have felt absolutely fine but to avoid getting I'll have to be careful therefore I have cancelled all my clients for this week. However this has just freed me to do more chores and other bits and bobs. I never was much good at simply lying around. Although I did achieve that yesterday.


Saturday was really fun. I celebrated my birthday again with some of my closest friends. The weather was scorching and we all lounged around in our back garden drinking and chatting. It was as if I had not even been in hospital at all.

                                             


I am very pleased actually that the entry wounds for the ablation are really tiny. There was no need for stitches and the bruising is minimal and doesn't hurt that much. They can't be seen either as they are within my bra area. I simply cannot believe that I can breathe so easily either. It hasn't affected that and I have no sensations in there at all. That has to be good.
 
Back to Saturday. Pete was ever the host and made tasty food and cocktails for us all whilst we listened and danced to music. You know, nothing stops me from having a little shimmy!

                                                            

 By 10pm the sun was starting to go down. With it being the Summer Solstice and the longest day we wanted to make the most of it but to be honest I was pooped. I slipped off to bed then I think one by one so did everyone else. Pete was the last in.

 
Sunday we all had breakfast, made by Pete yet again, and then our guests left. We had a day of nothing planned. We cleaned the house, stripped beds and got washing on then once all that was done we just chilled out. It was bliss. Sometimes they are my most favourite days.
Pete was overflowing with love and cuddled me all day. For me that is bliss. Bless him. He really is a teddy bear.
 

                                                     

Today is the first day of my week off and I have been quite busy actually. I had lots of emails to send and have contacted Prof Harris giving him an update on my surgery and asked for a ct scan of my chest, abdomen and pelvis for the end of July, just before I am due to catch up with him. That will be three months since my last one.
I emailed Dr Nesselhut to ensure that upon my next visit the EBV virus vaccine is there. That's the whole point of going really. No reply as yet but I am sure I will get one in due course.
I also emailed Dr Gonsalves, who performed the ablation. I had woken up on Thursday night filled with gratitude for what he had done, how wonderful the staff were all despite the horrible situation getting in the hospital. I want him to pass on my regards to all of the staff and to know that it was highly appreciated.

 I emailed Professor Dalgliesh to reiterate where I am meant to see him this week. Apparently it will the oncology outpatients at St George's where he will be providing me with interleukin 2 injections to start doing at home. Exciting.. The next phase


All in all things are pretty organised and I am really looking forward to my week ahead.
Yesterday was made better by our  wonderful friends bringing their new bundle of joy into the world...just lovely. I can't wait to meet him and give mummy a cuddle.
 

With all the gratitude flying around I have been meaning to create a gratitude jar. I bought some pretty coloured paper, cut it into small sizes and have prepared myself for the next year to jot down any grateful thought I have. On my 40th birthday next year I will read them with Pete and realise just what a wonderful life we have. I know this already but I think it could be really heart warming and such a lovely reminder for the great and wonderful things that happen around us.

                                                 

Right now.. I'm off for a cuppa and to try and relax...
It would have been better had I not just cracked my head on a cupboard door. That's the Universe reminding me I'm alive.

Thank you and noted....

 

 XX

 

 

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Triple Negative

Who IS Maria?

by Claire20. June 2014 10:03

I spent most of yesterday feeling dread and sick to the stomach. My mind was running away with me and I couldn't calm myself down. Bear called me from the car and told me that everything was going to be ok that it is unlikely the canSer has spread because I feel so well.

I felt delirious due to lack of sleep so by the time they came to take me to ct by wheelchair I could fall asleep sitting up.

I waited an hour for a ct and one by one the staff that would be assisting came and introduced themselves. Two nurses, about three radiologists, two anaesthetists, the doc who would be performing the procedure plus his supporting staff.. It was like a party. They all got together for a group hug and discussed me whilst I lay there on the bed waiting for the preliminary ct scan. It was very surreal.

The lovely anaesthetist came and said we would start by giving me something to relax... It was the best I felt all day. I felt really happy and so chilled.. Thank goodness. I was petrified before.  Then she said it was time for my 'gin and tonic'. She blasted me with the good stuff and I was given oxygen to breathe deeply.  That's all I could remember until I woke to hearing Dr Gonsalves voice in the recovery room telling me that everything went really well and that I didn't get a pneumothorax! Yay! No chest drain and that means I can go home today!

I felt really woosy for about four or five hours and when transferred to the ward I didn't have any pain and moved myself from the trolley to my own bed myself.

I had ablation done in two places and the entry nicks are placed one on my chest and two on my back.

I was on the ward for about ten minutes when my Bear arrived. Thank goodness. He went hunting and gathering because yet again I had missed dinner. He returned with plenty of food and despite not really wanting it I ate the lot!

The England football match kept me occupied for the evening and despite the disappointing result I was in quite high spirits.

I so wanted to have a good nights sleep but sadly this was not to happen. I got about three hours before the two old ladies next to and across from me starting calling out, banging tables, trying to get out of bed and shouting for Maria.. Who is Maria?

I have to laugh or else I'd cry but the highlight of my night was the lady next to me asked if she was here because she had murdered someone?! She said this was not the first time she had been kidnapped. Pahaha.

I did drop off again but then the nurses decided to wake me up....urgh.

Thankfully I didn't experience any pain during the night and I had a shower to clean the pen marks and blood off me.

On my return the doctor arrived and said I could remove the plasters as the nicks are really tiny and will heal much better being uncovered. 

He enthused as to how well it went. He said the top tumour really got it. They could really ablate that one. The one lower down at the back was very close to the lung wall and he didn't want to blast that one as much because burning the lung wall really hurts and causes more infection. 

I am booked for a ct scan this morning to see how things are in there as they can't really tell whilst doing the procedure. All being well, and it's highly likely then I can go home today! Whoop!

I told him that Pete is at an event in London all day so it would be much later that I will be picked up. He said in that case in between his appointment today he will aim to come up and tell me the results rather than email them to me.

Ordinarily they would do follow up ct scans but as this is being led by Prof Dalgliesh he asked what happens next? I said I have no idea but I guess I will email the prof and go from there.

To be honest I think it is up to me what happens next. I want more of the tumours ablated! Let's blast the little buggers... Hopefully the immunotherapy jabs will now mop up the rest of the tumours and the immune response will be great.

So that's that... I'm nearly at the end of this little episode and I can't wait to get home.

Although feeling generally well I think I could sleep for a week. Being ever the optimist I have booked my week full of clients. Pete said I'm mad and that right now I need to ensure I don't get any infections. Being in close contact with lots of people isn't wise. You know what? I think he is right -again. I could really do with some down time. It's surprising how stress full all of this is on the body and soul.

I can't wait to go home though because I am seeing my lovely beasties for a belated birthday get together. And before anyone curses me and thinks its a bad idea, I think it will do me the world of good. I need laughs and love for the soul. I don't have to overdo it. I can sit back and take it all in. The banter, the fun and of course the love.

Fingers crossed I get out of here today.

Xx

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Triple Negative

What? My procedure will be cancelled if there aren't any beds available?!

by Claire19. June 2014 08:43

I was asked to call St Georges hospital first thing yesterday morning, the day before my ablation procedure to see when they wanted me to attend in preparation. As I said before I was reluctant to attend the night before if I didn't have to. What I wasn't prepared for was being told on the phone that weren't any beds available and to call back later. I asked what if there aren't any beds later? They said the procedure would be cancelled. WHAT?  Oh my goodness. I felt sick. I said it can't be cancelled I have been waiting for this for months and my life depends on it. That might sound extreme but it's true. 

I was asked to call back an hour and half later and when I did I was transferred to the junior consultant who reassured me and said don't worry I will ensure you get a bed. I told her I was going to have my vaccination injection at the London Clinic that afternoon. She said to go straight from there to St George's in Tooting.

Gulp. I kind of thought they would say that. I knew that if I didn't go I wouldn't get a bed. So I rearranged my travel arrangements slightly and quickly packed a bag for staying overnight at hospital. I caught a taxi to the train station and hopped on a train London bound.

Pete reassured me and said that he would drive down later with my bag, save me carrying it. Perfect.

I felt very floopy and unsettled. The fact that the bed wasn't a certainty made me feel sick. For a short while I thought oh dear god, what am I going to do if it's cancelled? Then I thought... No. I will be having the procedure. They will have to throw me out of hospital. Grrrr.

I got to the London Clinic in quick time and the service there was impeccable. Well you would expect it to be for the charges incurred. The doctor was happy with the state of my current vaccination sites, which have healed up really well in the last week. They decided that I should have half the dose than before and that it will now be done monthly. 

Almost within half hour the site which is about an inch from the other two had already affected them. A hard lump has come up right next to the second site. Very strange but curious. It's currently very hot and itchy.

 

I got to St George's, the Oncology ward and it was complete bedlam. The Churchill in Oxford is busy but this place was, well awful. Mess everywhere. The toilets in a right state and I was told as expected that there was no bed available and that I was to wait. In the mean time they would take bloods.

I sat and waited for a few hours and then asked if I could venture outside and sit in the fresh air. It was so hot and stuffy I felt like I was being infected with everyone else's germs.

Off I went and waited for Pete to arrive. The problem was the traffic was terrible and it took him two and half hours... Poor boy. By that time it was 7pm and I was back in the ward which had now quietened down. I was told by the very flustered junior consultant that they were going to try and free up a bay which was currently being occupied by men, which needed to be cleaned. They decided that it would be better for me to be on that ward in case there were difficulties after the procedure. Ok, I thought that sounds great.

All during that time, I had been contacting Prof D, Dr Gonsalves and anyone else that would listen. I figured I'd get on their cases to ensure they got me a bed! I had a few replies and they all said they were sorry but there was no private wing at St George's and that unfortunately that is how it is at this hospital.

By 7.30pm Pete arrived and we were told to go out for a while. I had a plan. Let's go off site and have a tasty dinner. I had seen a great little bistro on my way to the hospital. We weren't disappointed. We ate more than enough. I figured if I was to be nil by mouth from this morning I may as fill myself up now!

We got back to the hospital ward at 9.30pm and were told that they hadn't moved the men from their ward and that I was to go where there was a bed available- across the hospital in another ward.

A nurse took us on a ten minute walk and we arrived at the Amyland ward. A ward for geriatrics, people with Alzheimer's and rheumatoid arthritis. My heart sank when we walked in. The hospital is old and the lady opposite was clearly not with it and was crying and asking the nurse where she was over and over again.

 

I unpacked and got settled in and walked Pete to the door at the end of the ward... I so wanted to go home. I was told to try and sleep but that was never going to happen. Not because I was worried but because of the old lady across from me. She called out for Ivy, Edna, Maria and anyone else she could think of. She asked for forgiveness, the need for a poo and so much more. The whole bay was kept awake all night. Seriously I wish they would give her something to sedate her. Bless her. It just made me think, I don't want to get that old! Which is ironic since I am doing my best to stay alive for many decades to come! So weird. I kept thinking what is this trying to teach me? I came up with nothing.

 

At 5.20am I decided I would have a shower and eat something before I was told be nil by mouth. The nurses here are lovely and I have since had an ECG and have a catheter fitted with IV fluids on a drip. The procedure is due this afternoon.

That's the only details I have.

I am seriously missing Prof Harris and the Churchill hospital right now. That hospital rocks compared to this. It's chaos here. I will forgive everything providing the ablation goes to plan.

 I just hope I can go home quickly. I will never heal here. I won't get sleep, I feel like I will catch every bug under the sun, especially when I am greeted by sick and faeces in the toilets on my very first visit to the loo... 

 

Pete has been amazing as always and has insisted he will be here when I wake up. It's such a gruelling car journey. It's not necessarily far it's just horrible on those particular roads.

 

So here I am sitting on my bed, feeling very spaced out due to no sleep and a little bit anxious. I hope it doesn't hurt too much. I want to go home!!

Tags:

Triple Negative

Seriously, it was the best birthday ever!

by Claire16. June 2014 14:34

 

I know I say I have had the most love filled awesome time ever, probably almost every Monday after every weekend. And I am blessed with having so many great experiences and times with my hubby and friends and family BUT this weekend was the best of the best... The best one ever! (oh, oh, oh...One Direction song springs to mind!)

It was my official birthday weekend and we spent two nights in Mawgan Porth, Cornwall at an exclusive hotel called The Scarlet Hotel. http://www.scarlethotel.co.uk/

There aren’t enough words to describe the utter beauty, the views, the service, and how we were totally blessed with the weather. England is the best place to be in the world when we have great weather.

Our room overlooked the bay where the surf was crashing on the shore and we watched dogs and their owners, surfer’s bobbing out in the waves and children running and screaming with joy.  We joined them in the screaming and the running and tested the water temperature... Cold but invigorating.

From the moment we arrived we just felt like we must be in heaven. We were full to the brim with happiness and love and gratefulness. We ate at top celebrity chef restaurants and mooched about all day. Everyone was friendly and seemed to be so very happy too....

We slept with our door open at night to hear the waves crashing and it took me a night to realise that that’s just how loud waves are and that there wasn’t a storm.

Every morning we were woken by a knock at the door and greeted with a fresh pot of green tea. Seriously I cannot express just how brilliant it was. Pete and I laughed so much and looked at the scenery in awe. We played like children with our new purchase, a boogie board, and squealed with laughter when the waves caught us and we skimmed to shore (losing shorts and biking bottoms on the way!)

                                               

Leaving yesterday was sad but we still had a lot to see. On our way, we went to another beautiful surfing bay and then to Port Isaac where the well known programme Doc Martin is filmed. This tiny fishing village was buzzing. We sought after Cornish delights then climbed the steep hills to start our journey home.

God really was looking out for us as we came across two accidents on our route which we just missed each time. Thank you, thank you, thank you!

Once home and unpacked and tucked up in our soft comfy clothes we tucked into our tasty delights; Cornish pasty followed by Saffron cake with Cornish clotted cream and a bottle of pink fizz bought for me by my lovely client. A brilliant end to my 39th birthday. I feel my 40th may be hard to beat but I sure know that I am going to be fighting fit to get there in a years’ time... I have a big week ahead of me.

 

                                                              

                                                         

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