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The Venetian Masquerade Ball was a huuuge success!

by Claire26. November 2014 14:19

I've been a bit lazy these last few days. I've been meaning to write and give an update but the weekend was manic to a degree and as usual I needed to catch up on things.
The big highlight of the weekend and well I guess for the end of this year was the Venetian Masquerade Charity Ball that my friends suggested to raise money for our favourite charities; Breakthrough Breast Cancer and The Cancer Vaccine Institute.


Pete and I had quite a lot of input and helped out quite a bit by obtaining auction prizes and selling tickets and so on, so we felt quite nervous and hoped it would raise lots of money. Of course as a typical women, the other big thing was what to wear... Argh! For me I hoped that I would have hair but of course that wasn't to be so my thoughts were, do I go bald or wear a wig or...?


The ball was being held at Caswell House, and the food and drinks and everything supplied from lighting, to the fun photo booth, to the dj, band, photographer and table centre pieces and everything were donated or provided at cost! My friends even paid for an additional photographer for me as a surprise! (Thank you ladies!)
As yet I haven't seen any official photos but there are lots of snaps from friends...

 

 

We arrived to a wonderful champagne reception with everyone fully glammed up and wearing masks.. I arrived in a red dress, red shoes, red and gold feathery mask and... A red sparkly bob wig! It was funny because some people didn't recognise me! For me it was a big thing.. I didn't want to look silly but thought it was a great opportunity to really be a bit extreme...


I have to say everyone excelled themselves. Every single man and woman looked awesome, so dapper and beautiful.


I simply cannot believe how quickly the night went. We arrived at 7.30pm and left at 1am! I wasn't ready to leave! The food was simply divine, the auctioneer/MC was so funny and handled the night brilliantly.

 

A highlight of the night was how much the auction prizes went for! I cannot believe the generosity of everyone and it was so exciting!


The stand out moment was Pete’s speech..Everyone was left teary eyed and it really focused our minds as to why we were there. I couldn't look at him for fear of really blubbing and ruining my make up! I think his message got home though. His main point was how much love there was in the room... The circle of love. I really believe that everyone felt it.


On the night I was being updated as to how much we were making.. I couldn't believe that £2000 was made on raffle tickets alone! My numbers were called out.. I won a lovely Christmas wreath.. It's on my front door now.

                                          

Yesterday I got an email from Kate at Caswell House to say after all costs that the total raised was £20,560.00! Oh my goodness!!!!!! This is an outstanding amount to have raised..


I want to thank everyone who came, who donated, who supplied and contributed in every way. I know the money doesn't directly help me but I hope that it helps so many ladies and their families and I hope that they will never be in my shoes... Bring on a cure.. Please.

The following morning we headed over to Witney to see our friends and my mum for breakfast then I think we all started to feel very jaded. Pete and I and our lovely friends Alex and Lee spent the afternoon watching rugby and eating! We chilled and laughed and generally felt very grateful. Sunday was very much the same for us when our friends went home. It may seem like we spend a lot of time doing very little but that's exactly what we need sometimes... It's so nice to wind down and be wrapped up in a soft blanket and have my feet rubbed by my Bear... I love him so much.
 

This week has been going well. I have nothing much booked in so it's brilliant. I have been getting admin done, doing my daily rituals and really trying to get on a roll.
 I've been exercising, doing yoga and eating very well. I still look very pale and have very puffy eyes. Nothing a bit of make up won't cure or a holiday..... He he... Which we have booked!
In true Pete fashion, he said that we have to keep living like we normally do. So despite having to travel abroad and go to hospital we should still book our trips away like we always do. We didn't want to hang around over the new year holiday period so have booked to go to warmer climes and get some vitamin d and bliss out. I was a bit

nervous booking a holiday but now I have done it I'm really excited! Whoop!
 
I have had confirmation from St Barts that they finally received my tumour sample and they have sent it to be tested. Hopefully this Friday or next Monday I should know if I'm eligible for the trial... Watch this space.

I have also had confirmation from the Churchill hospital in Oxford that I have an MRI and CT scan booked for next week, so the results should be with Prof Harris the following week when I see him. So that's good, I will at least know in detail what is going on and if the radiotherapy has worked. I have everything crossed. I have to say I feel better in myself. Still no cough, no headaches and now no shaking. That's got to be good news?!

I am definitely getting in the Christmas spirit. I have been doing all my shopping online...Sorry Mr Postman! This weekend I am going to drag Pete to buy a Christmas tree and then we can have our ritual of singing Christmas carols around the advent candle.... Bring on the mulled wine and sparkly lights! I have started writing our Christmas cards and I have drawn some Christmassy pictures... He he...
All in all this is a lovely week.

Bear and I are getting lots of sleep, eating really well and generally looking forward and loving to the max! We are spreading the love and feeling the love from all our friends and supporters... #circleoflove

Tomorrow I am being picked up by my sister, then spending a few days with my mum! We are going to finish the Christmas shopping and I get to be spoiled down in lovely Dorset by my mum....

Fun packed, love filled and generally looking forward to what’s coming next...


A massive light and love... XX

I would like to officially thank the following for their contributions and donations to making the charity ball a massive
success;  


My good friend Samantha, one of the Kitty's Climbers, who thought this idea up and grafted over the last 6 months,
To Kate and Steph at Caswell House for all your hard work and making it happen so smoothly.
To Amanda and Richard for letting us host the ball at your stunning venue.. Caswell House is gorgeous and I can't wait to be there again sometime!
To Jason and Nick from the Es Vive Hotel and Chic Villas in Ibiza for your generous auction prizes.
To Ivan and Harvey Nichols London for donating a wonderful cocktail masterclass
To the anonymous person who donated a signed arsenal shirt
To Nilam Patel for donating a spa day at her Dermaspa
To Marianna and Francesca at Soru Jewellery for donating the stunning rose quartz necklace
To Sarah Pooler and Ocean Beach Club Ibiza for donating a day/bed with cocktails

To all those who donated prizes they are featured on the ball programme attached...

Thank you to you all! You’re all amazing!

X 

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It's all about the money...

by Claire19. November 2014 17:07

 

I have been having such a lovely week. Slowly clawing my life back together again, I think.

I have exercised these past few days and boy do I feel it. I mean, I am doing light exercise; 20 minutes of yoga and then some boxercise. I am aching all over! I didn’t realise how unfit I had become! But it’s good. I need to get stronger and fighting fit.

I still look pretty scary. When at home I don’t wear make up and with my very pale head which is lovely and shiny since Pete shaved it for me, I have huge bags under my eyes... Thankfully I am still decreasing in the puffiness. I am now only taking half a steroid daily which amounts to 1mg.

I had an email yesterday from Prof Harris’s secretary telling me he will book CT scans for me prior me seeing him in December. Actually I had a really nice surprise. I am quite demanding and do really keep on chasing things when I want something. The secretaries do get bombarded with all my emails and requests. Yesterday this particular secretary said that she thought I was really sassy and inspirational... How nice?! I replied and said, ‘Not really. I am simply trying to stay alive and have the best life possible.’  It bought a smile to my face though.

The trial secretary at St Barts has emailed me to say that she has had contact with Oxford and hopefully my tumour sample is being sent down today. It then need to go to US to be tested. Boy, these things take forever....All this to find out if I am eligible.

 

I've been having a little dance today around the kitchen. Pete is an avid listener of music and at the office he plays all genres depending on his mood. He has started sending me playlists to play every day whilst at home. I love it! I have been having a good old shimmy. It’s funny as I was feeling a little rough then the music came on and my booty shook and the sickly feeling went away.Tongue outI'd highly recommend it!

 

When we got back from Germany last week, I was met with a letter on my doormat from a debt collection agency. They had been instructed by St George’s Hospital in London?! Apparently an invoice had been sent to me on the 24th June for the ablation that I had and I hadn’t paid. I have until the end of the week to pay. I immediately felt stressed. I know what these debt collectors are like. Dogs with bones!

There are two things that are wrong with this situation. Firstly I have never received an invoice from St George’s and secondly, I paid the invoice over a week before the ablation which was on the 19th June. I felt aggrieved that they hadn’t called me asking for payment and they had simply passed my details over to a debt agency. I now have a black mark on my credit rating. Not only that we all know that stress is major factor when it comes to canSer.  Pete said not to worry but I do. It did play on my mind for one night and then I got on the phone the very next morning.

The debt agency couldn’t even be bothered to answer the phone so I called the hospital. They looked at the records and it sounded like pennies dropping. Yes, they could see I had already paid and then they looked for the invoice that I had apparently had sent to me. Ah, they couldn’t see it actually going out. They hadn’t allocated my payment. I did express my concern to the fact that they hadn’t even called me before instructing the debt agency. All the lady could say was don’t worry I will get it sorted and make sure the debt agency are contacted and this is resolved. She promised to call me back. Well she didn’t. I called back the next day and she said she had been busy.... Really... I very much doubt she will get it dealt with and I certain I will be hearing from the debt agency again. I actually look forward to them taking me to court.

With canSer it’s all about the money.... It’s a disgrace.

 

Whilst in Germany I bought some new supplements from Dr Nesselhut. Boswellia serrata- otherwise known as African Frankincense. Its main benefit is reducing swelling in oedema in the brain and it also has anti carcinogenic properties.

 

Today, I have been making more of my charity wish bracelets in preparation for the charity ball on Friday evening....It’s getting ever closer and I am really excited to be getting dressed up and having a party with all my almost all my friends! I cannot wait! I am unsure what to do with my head at this stage. Wigs are so annoying and I fidget... Going to have my nails done tomorrow.....Eek!

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Triple Negative

Hair No More... Third Time Lucky....

by Claire17. November 2014 17:11

 

Monday already! The weekend was good... I went to watch England play rugby with my Bear and two of our friends. It was full of banter and laughter. Just what we both needed after a challenging week. To honest I didn't think I would be well enough as I felt pretty rubbish Friday. I suppose everything had caught up with me.


My hair has been driving me mad. Every time I move I can feel it fluffing my face as it slowly fell out. My pillow was hairy and when I had a little cat nap on the snug sofa I was surprised as to how much hair was on the cushion.... Been there before but it is so annoyingly itchy. I didn't want to get rid of my hair too soon though because if I was going to the rugby I wanted to have hair. Luckily I felt fine and looked ok too.


Sunday we got on with Sunday things and got to see our friend on her birthday. I felt pretty organised getting things done and not being under any pressure. Then Bear and I had hours in front of the box. TV is great leading up to Christmas with all the reality shows. I know it's not great intellectual viewing but it's great to take our minds off things.

 
 The problem was as the day wore I started feel rough again. I was shaky... Again. I just don’t know why. My appetite isn't right either. To be honest we both feel a bit under nourished at the moment. When I don't really feel like eating a full meal we just make do, so I am definitely not getting as much green veg inside of me. I figure I have to just chill out and go with the flow. Everything will work itself out and forcing things just makes me feel like I am not achieving what I should. But being calm and happy at the moment is more important than having spirulina and juices.
 
I suppose the main event of the day was that Bear shaved my hair off me.
Third time lucky. I don't think it gets any easier for him but as he says he would rather shave my hair off than not have me around. My scalp is still a bit itchy as it has some bumps and spots on probably from the radiotherapy sensitivity. I have been using cream on it ever since to soothe and repair it.

                                                 

This week we have made a decision to cleanse our systems and try to be kind to ourselves. This means plenty of water, green tea, homemade soups and things that don't aggravate us. Fresh fish and spinach, and hearty tangibles etc...We shall see how well that goes!

 

Today I had a Skype session with a spiritual guide who was recommended to me by my friend. I really felt I needed someone to talk to and perhaps lead back to connecting with my emotional and spiritual side. He was great; really friendly, and I felt so calm afterwards. He did some exercises with such as; letting go, God / universe is everything, and choosing five people I look up to and their qualities I admire. I won't go into detail how those exercises went but I did feel better...


I have also been catching up on the Deepak Chopra meditation challenge and have meditated 3 times today. For the first this morning I actually felt like I really meditated and didn't just think all the way through. That's been a while. Actually deep breathing can be quite painful for me still as my ribs are very sore, but I think they are slowly getting better.

 
It's so weird that I am typing this and its 5pm. I am not ready for it. It isn't cold so doesn't feel like November... Christmas is round the corner and I need to organised!
 
I have a relatively relaxing week ahead... I'm looking forward to it. I am going to introduce exercise in some form. I have to. I am so unfit and I can't allow myself to get sicker. Any kind of exercise, even light, will actually help tiredness from chemo and radiotherapy. I'll start tomorrow. :)

 

For now I have Friends on the TV and I am going to have a green tea.....

 

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Triple Negative

Four days of intense treatment......

by Claire14. November 2014 11:58

 

The last few days have been intense to say the least. We always knew it was going to be the hardest yet and it has been in many ways. We left home at 4am on Monday morning for our flight to Frankfurt. It's mental how any people are up and on the roads at that time of day!

 I had sort of planned everything as best I could but still didn't really know what was going to happen. We got our hire car and headed to the hotel. Thankfully our room was ready... Cool everything was going better than expected.

I had an appointment booked at 1.30pm with Dr Seibenhuner which can I say translates to Dr Seven Chickens! Pahahah! Love it... You gotta laugh when you can.

We were pleasantly surprised when we arrived at his clinic that it actually resembles a clinic; very clean, professional and well normal. 

We met with the doctor, who was a really nice guy.

I showed my RGCC blood test results so that he could see what things should work against the canSer I have. We spoke about IPT, insulin potentiated therapy which is promoted as a "kinder, gentler" approach to chemotherapy, with "little to none of the negative side effects of chemotherapy." It purports to use about a tenth of the usual dose of cancer treatment medicine. The effect of the chemotherapy is claimed to be magnified or potentiated by the use of insulin, which lowers the blood sugar. People who offer this treatment claim that insulin "opens up" the receptors on cancer cells so that more chemotherapy can get in.  The patient reports to an IPT clinic after having had nothing to eat or drink other than water for 6 to 8 hours. Intravenous (IV) fluids are started, and the patient is given a dose of insulin based on his or her body weight. For people with cancer, low doses of chemotherapy drugs are given a few minutes later so that they reach the bloodstream after the insulin has started to lower the patient's blood sugar. This is called the "therapeutic moment" by some IPT providers.

At this point, the patient usually has some symptoms of low blood sugar (hypoglycemia). These can be quite severe, especially the first time, because people can respond to a standard dose of insulin quite differently. The IV is switched to a high-sugar solution to raise the blood sugar. After the symptoms of low blood sugar begin to improve, the patient may be given food to raise the blood sugar further. During this process, the blood sugar may be checked by finger stick. 

We then discussed possible drugs/ infusions to use with the IPT. Based on my RGCC blood results we discussed B17, which is present in apricot kernels and illegal to use in the UK, artemisinin, which I take orally daily, DMSO, which has been recommended to me recently to enhance everything I take in the system, plus a few other things such as potassium and magnesium. As well as this I was to have local hyperthermia on my brain and my chest. I can't think if there was anything else. My eyes were wide and I was in a bit of a state anyway. Dr Seibenhuner said let’s get started... There and then. Wow.... This was amazing...

Of course cost was running through my mind. Pete dealt with that side of things and was surprised as to how much it was. It was no way near as much as what we were used to paying... So that was a bonus.

Straight away they jacked me up to infusions, insulin injections and the hyperthermia machine. I was scared that my blood sugars would go so low I would go into shock. I was apprehensive about how all the infusions would make me feel. They assured me I should feel fine. They took blood samples and said they were to be sent away for testing to see if my cells did something?! To be honest I have no idea I just know I have results to come back. Hope they are good.

Two hours went and I laid there and got hotter and hotter. I didn't feel any more shaky than I already was. My blood pressure was monitored regularly. I don't suffer high or low blood pressure but that day my blood pressure was ski high. They also tested my blood sugar a million times. My finger tips are totally punctured. The interesting part was it started at 115 and they hoped it would drop to half that. But during the whole two hours it would only go as low as 89. I was worried that wasn't low enough and that it hadn't worked. I was assured that the reduction was fine. We asked why my blood sugars were so high. They think it could be stress... No really?!!! My body was vibrating from everything... The other thing is I stank. They hadn't told me that one of the infusions stinks... Honestly I stank of rotting flowers and cabbages for days. I couldn't smell it. Pete said that every time he walked in to the room all he could smell was me.. Brilliant. I am a smelly nelly. Boo!

So that was a success.. 

Day two- Professor Vogl and TACE

Having had this once I was nervous again. We arrived and I was taken straight into have an MRI. Pete went on his way for the afternoon. He had work to do but sadly money is the main objective to all these clinics. Despite having paid in advance and online the administrators hadn't bothered to check and demanded Pete prove he had paid. Poor Pete spent hours getting his bank manager to show proof and make phone calls and more.. Unbelievable. Are CanSer patients that unreliable?

All the while I am oblivious to this administrational nightmare.

Prof Vogl sauntered into the operation theatre where I was laid like a piece of meat waiting for him. I was hooked up to the ct scanner and my other images showed up too. Prof said that there was good news. The tumours in my right lung have reduced by about 20 per cent. Wow... Really? He said the lymph nodes not so much. 

He got started with the procedure and the worst part really is the anaesthetic injection and the little knick into my groin artery. There is one particular male nurse who preps me and is present the whole time and he always gives me a rub on the shoulder to soothe my pain. I watched on the screen as the tube goes through my heart in my lung area. The feeling in my heart is so bizarre. He did say my heart had reduced since last time too, so that means the fluid has reduced. I told him my cough has gone and told him about my other treatments that I had, but to be honest he doesn't seem to care.

That's the only thing. Every clinic and doctor gives such different standards of service. Once the procedure finished I had to lie there for three hours to recover. I don't know what they give, although I hope I will sleep and I never do, but when I finally got up my pupils were massively dilated. Brilliant, more drugs to make feel detached.

I sat then for about an hour to have another ct scan to make sure I wasn't bleeding to death and then I went to see the Prof. He showed me images from my first visit and that day and I could see the reduction in my right lung. I couldn't see the lymph nodes. He said the ones in my left lung are so small not to worry about them.

Pete and I were concerned as to how this treatment would be going. How many times do we need to go and how is it going to get rid of completely? In my addled state I was unsure what the benefit of that treatment was over chemo. Obviously, normal chemo kills all cells. TACE targets the specific areas and the side effects are minimal. I have to be honest I saw the chemo shoot through my lungs on the ct screen and then I am walking around feeling fine. I can handle that over systemic chemo.

Prof said in his limited fashion that we should continue making the right lung and lymph smaller and then he thinks we should ablate them with RFA or Laser treatment that he offers. Ok right. I think if I have any questions I will have to email. It's like getting blood out of a stone.

We hot footed it out there with mixed feelings. I should be over the moon that there has been such success in only one month! But in my drugged up body and the concern for just getting to the next destination all happiness is taken away. You can't really feel happy when you are being given news by a cold blooded heart less doctor. There is no emotion in some Germans! 

By now it's late afternoon on Tuesday. We jumped in our trusty hire steed and made a three hour journey to what I call my German home, Duderstadt.

There has been no daylight since we got here. That has made it worse. I feel like I am walking around in the dark and it's not very uplifting or inspiring. My body feels different every day. I'm reducing the steroids but my face is bloated now and I have puffy eyes. My scalp and forehead are itchy and my hair has started falling out from the radiotherapy, God darn it! I really hoped it wouldn't but I am gutted. I know it's not the end of the world but with a fat face I don't look good. I have aged with worry and have more wrinkles than before. I rocked the bald look years ago when I looked healthy. I do not look healthy. My mind is a mess as is my body. I'm a wreck!

We arrived at our usual hotel, the Zum Lowen and were welcomed to the first room we ever stayed in. Bliss! The beds are out of this world.. The bed covers, I have to have, are silky smooth and despite knowing I might not sleep very well, because I haven't lately, I didn't care. I knew lying in this heavenly bed would be just what Pete and I needed. I wasn't disappointed.. 

Day three- I got up yesterday with plenty of time before my first appointment at Dr Nesselhuts. I was having hyperthermia and more infusions. I decided to catch up on meditation and emails. Pete had lots of work to do so I made sure I kept quiet. I had a great morning. Off I went for my treatments. Putting needles in my veins is really getting to me now. I have great veins but my good one is starting to look a mess. 

I came back to the hotel and chilled even more. I felt all blurry.. My puffiness is getting right on my nerves. Pete and I try to be as normal as possible but really I just feel shaky the whole time. I'm worried it's my blood sugars or is the drugs or is it all of it?

Another great night in the heavenly bed. But I still wake up thinking half way through the night. I can't switch off my head but I'm not sure what I am really thinking about. I woke with aching ribs and a mild headache. The first headache in a while. I put the rib aches down to TACE. I remember feeling a bit achey last time from that chemo. The headache I hoped would be nothing. I haven't taken any pain relief and I feel just fine at present.

Day four- I'm up packed and ready to check out. I have another session of infusions and hyperthermia then to see Dr Nesslehut. I've booked the earliest appointment possible as we have to get back to Frankfurt for our flight. Bloody pressure! I know I could make it easier by staying an extra day but we have to get back. Pete has important work and that's how we make the money to pay for these crazy adventures. 

I feel ok. I'm shaky again and a little less puffy- yay! But I still feel like I am living in a parallel world. When I lay in the ward after TACE it was like being in a movie where a captive is taken and is being tested upon. Foreign language banding about and being prodded, poked and given, well it could be anything?! It does take the feeling of control away somewhat.

Pete just goes with the flow.

I saw Dr Nesselhut and we discussed future treatment options. He discussed ipilimumab, a drug that one of my friends had recommended. I didn’t even need to bring it up as Dr Nesselhut did.

Ipilimumab belongs to a group of cancer drugs known as monoclonal antibodies. Monoclonal antibodies are sometimes called targeted therapies because they work by ‘targeting’ specific proteins (receptors) on the surface of cells. Ipilimumab is a bit different because it works by attaching itself to normal immune cells. This changes the way these cells work and helps the immune system destroy cancer cells. Apparently it can be deathly and is very expensive, but if I go for it combined with CD80 then it could really do the trick.

I can’t remember the facts on CD80 but it is something to do with T regs. Honestly you need a degree in science. Ok so there is a plan for the future. We skipped out of there and drove like the wind back to Frankfurt dodging awful car accident after another. I don’t know how we did it but we got to the airport with hours to spare til our flight. Being cheeky we asked the check in desk if we could get on a earlier flight... Yes!

Boom we got back to Heathrow and then home a few hours earlier than expected and it made all the difference. We were in bed by ten and had unpacked and prepared for work today.

It’s amazing to be back even if I am walking around with niggles, aches, pains and a hazy head. Once I have done some admin I will meditate and really take some time this afternoon to just BE...

 

Pete squeezed me as hard as he could throughout the noisy rainy night and we woke up thinking our bed is just as good as the heavenly bed at the Zum Lowen. There’s no place like home. X

 

 

 

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Triple Negative

Dining with Davina and my favourite ladies....

by Claire9. November 2014 13:59

 

I had a brilliant ending to my week. Friday ten of us; me, my mum, my sister and some of my nearest and dearest friends went to a charity event hosted by my all time favourite person (other than my Bear of course) Davina McCall! I went to it last year and decided it would be much better surrounded by a table full of loved ones. There were 400 people attending, all women, so you can well imagine the energy in the room!

As part of the event we all got to have photos taken with Davina and she is so friendly and wonderful. It’s like you have known her for years and that you are personal friends. I showed her the card she had sent me and thanked her for brightening my otherwise crappy day following my visit to St Barts re gamma knife. I’m always a little lost for words and I don’t want to be really needy but I would love to have time to really talk to her. I love the fact my friends say that I remind them of Davina with my mannerisms. I’ll take that huge compliment- thank you!

 We had a wonderful 3 course meal and then I bought the photos that had been taken. Sitting at the table admiring them (well actually criticising my hair! I look like Mr Tumnus from Narnia with horns! I’m not complaining really I feel blessed at the moment that I have hair, it could be gone in a few weeks from radiotherapy) I felt two hands land on my shoulder, and a voice say; ‘Ah that’s a lovely picture!’ Turning, it was Davina looking over my shoulder. I was thrilled!  I hopped up and she gave me a big hug and my friend took a quick snap on her phone.

                                                    

I don’t know about you but Pete and I have a list on our board at home of people we would love to invite to the ultimate dinner party. My number one guest is Davina McCall. Naturally. I bet it would be a great night.

The fact is everyone on the table at the event on Friday love Davina and they all loved spending time together. I would love it to be our annual event. Any excuse to get dressed up and have a good girly catch up. We laughed, talked, danced and cried.... We are girls. They cry a lot!

 

                                        

                                         

 

I suffered for it yesterday. I would love to say it was probably from drinking alcohol, which I did indulge in but I simply didn’t sleep Friday night.

Of course I missed Pete. I chatted with my friend until 1.30am tucked up in bed but then a few hours later was awake with pains in my knees. This is new... What is going on? I took pain relief, a lot of it. And it didn’t touch the nagging aches. It’s so weird. One thing goes and another begins. I feel like a bloody hypochondriac.

 

We all stayed at the hotel and for breakfast bleary eyed faces appeared as we gathered for a right royal breakfast. I took advantage of it all! It’s odd though because I don’t taste things properly. I don’t have the same urges of what I really want to eat. I don’t have an on/off button. Days can be really exciting and full of clarity and others I can feel a mess. Take today. I woke up at 4am having had a day on the sofa yesterday. (Thank you Louise for getting me home and delivering me to my husband! Sorry for not spending time with you and your better half last night! I simply couldn’t manage moving let alone being any kind of decent company! Ha-ha!) I slept well up until then and then my mind was racing; in a good way.

I got up checked in online for our flights tomorrow and packed my suitcase. Then it all went wrong. I had the shakes, felt hugely emotional and can’t make out what I am meant to be doing?

 I have halved the steroids and hope the things I am feeling will subside quickly! I want ‘me’ back. Luckily for me I was on pretty good form on Friday. I chatted for England, danced and laughed and stored those memories with my ladies in a big gold memory box in my mind. That’s a keeper I will cherish.

 

We have a big week ahead starting with an early morning flight to Frankfurt tomorrow morning. We are off to Dr Seibunhuner to see what infusions he may recommend then Prof Vogl on Tuesday for TACE number two. Then Day three off to Duderstadt for more bits and bobs then drive back to Frankfurt for our evening flight home on Thursday.

I have to say I am not hugely looking forward to it but needs must. If I was on better form then it would be all ok but it’s a struggle. I am in danger of forgetting things and I don’t want to keep moaning about feeling under the weather to Pete. This is so hard on him.

Look on the bright side. I do not have a cough, and at the moment no headaches or tingling! Yeha!

This morning it is beautiful outside. The sun is shining. It isn’t raining and nature was calling us. We went out to a  Remembrance Sunday service and said the Lords prayer and sang the national anthem. It felt good. I feel blessed for the many amazing things in my life. I mustn’t lose sight of that.

 

Pete is cooking in the kitchen...although we have just had a disaster. We decided to have a hugely anti inflammatory juice to give us both a kick start. Turmeric, garlic, ginger and chilli were the ingredients or ammo! Sadly it ended in tears. Literally. We both vomited! Ha-ha. And now I stink of garlic and maybe a little bit of sick! Urgh!
Life’s about trying... and God knows Bear and I are doing a lot of that!

Happy Sunday, you gorgeous people. X

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Radiotherapy done and dusted and trial in progress.....

by Claire6. November 2014 11:51

 

Treatment number four went fine although I had over an hour delay. We didn’t get home until 7pm... oh well that’s it goes...Still no headaches and only a slight tingling sensation.. Is this normal? How can I be getting away with no headaches?

Yesterday I got up at stupid o clock and got on a very early train London bound to visit St Barts hospital again.

This time it was to sign a consent form for a trial. I was a bit anxious because I had to be back in the afternoon for my very last radiotherapy session. The thing with public transport is that you never know what may happen. I read online the day before that my friend took  five hours to get to London!!

That was why I was being extra cautious and getting to London ultra early before my ten o clock appointment. Everything went swimmingly. There were plenty of seats, the underground wasn’t heaving and I found my way by foot just fine. I had plenty of time so hopped into a lovely cafe and had sausage and egg with a green tea for brekkie. All the while I was texting and emailing the consultant who had arranged the appointment to say I could be seen earlier. Well if you don’t ask...

I didn’t get a reply so I went to the clinic reception half hour earlier and low and behold they had no record of me. Why was I not surprised? All the women on the desk looked at me all confused so I got up the emails on my phone. I then proceeded to email frantically and did get a response. In a short while one of the trial organisers came and introduced herself and said it wouldn’t be long. What a relief.

I then met Dr Peter Schmid who is heading up this trial. We discussed the fact that I wanted Peter there and that my brain is a bit mush like so I may not be on top form. Dr Schmid said it was fine but essentially he got my medical background off me. I really must write out my timeline! It would save so much time and recollection. The trial requires testing my tumour sample that was removed way back when to determine if it expresses the protein relevant, therefore making me eligible or not. Apparently only 1 in 3 are eligible. Bugger. Sometimes even if the tumour results come back negative they take them on anyway because there is evidence that the trial, PDL1, stimulates the immune system and can therefore still have an effect on the cancer. I am  not sure what they will decide with me.  So that’s what I went all the way there at a cost of over £70 for. Worth it I guess. (Travelling peak time is a nightmare!)

I signed a document giving consent for them to contact the Churchill hospital and obtain a sample of my old tumour so that then they can send it to the US and have it tested. The reason for the urgency is that these things can take a few weeks. It clearly will... Then if that comes back positive and we are all systems go, Dr Schmid would like me to start the trial before the end of the year. I like this. I like moving forward and getting on with things. To be honest I really must.

I mentioned to Dr Schmid about having TACE and he said that it wouldn’t work for the lungs. Really? He expressed the positivity for TACE for the liver but not lungs. Oh well we will see wont we?

I mentioned the symptoms that I had been having and that my headaches are not really there only a tiny bit of tingling. He said that ideally I would need to have stable tumours and no headaches to proceed with the trial. Well let’s hope by then my brain is all sorted. I should be having an MRI by then and will know if the radiotherapy has worked.

Also I should be off the steroids by then completely. I contacted Dr Oliveros and she advised that as of now I can reduce the steroids down from 8mg to 4mg per morning for five days then 4mg to 2mg for the next five days then down to 1mg by breaking the tablet up until I see Prof Harris on the 9th December. Brilliant. I am quite excited about this. I can’t decide if the ups and downs, the high energy moments followed by the sketchy shakiness is the tablets or just me? Is it a side effect or is it me ever since the brain tumours?

Anyway back to Dr Schmid. He seemed really nice and very caring. He is concerned for me and said that he feels I should get on either carboplatin and gemcetibine or eribulin as asap if I am not going to eligible for his PDL1 trial. Of course that is my next option. After TACE.

Whilst I was there I got a few messages from two ladies. One lady is currently on the trial and gave me their details. It was lovely to chat with her and I sent her regards to the doctors. Then I also got a message from another wonderful lady who had got her friend with TNBC onto the trial and should have started last month. She sadly passed away before she could start the trial. She said how  lovely Peter Schmid and Louise Lim, the consultant were. I passed on her regards to them both. They seemed touched.

I signed the document and skipped out, back to London Paddington. I was back home by 1.30pm. By now I was absolutely pooped and almost fell asleep on the train. I mooched for a few hours then my lovely sister in law drove over an hour to collect me to take me to the Churchill hospital as Pete had some very important jobs on and couldn’t take me.

We left ultra early and spent a good hour chatting in the cafe at the hospital. I went into radiotherapy early and was seen early! Yay! My last treatment went quickly, although I am sure the radio beam was longer than before. There is such a weird smell and the metal taste from my fillings is weird. But other than that harmless.. well you know what I mean!

We left and drove straight into the rush hour traffic and also the road works around Oxford. This meant my sister in law and I chewed the fat for over an hour! Honestly we must have steamed up the car! Haha! It didn’t feel like and hour and we certainly didn’t get stressed. I was so grateful for her taking me.

I bought the mask that they used on me home. I kind of thought that if I needed more radiotherapy that it would be helpful to keep it, but they said they would make a whole new one in case my face had changed from weight etc... Oh ok.

So that’s the end of that chapter. I am geared up for four days in Germany next week for some hyperthermia and infusions and to see Prof Vogl of course.

I was absolutely wrecked last night and slept like a log after having such an awesome dinner made by my Master chef Bear; seabass, celeriac mash and green vegetables. We are trying to take on board the ketogenic diet but during the day was a bit hard as I had some carbs like bread. I am trying. Honest!

In fact I am trying so hard that I made some flaxseed crackers and flax and coconut bread from the recipe book by Patricia Daly. The crackers are ok. They are not thin and crispy. I must try them again. But the flax and coconut bread is moist. It’s bit thin and not very flavourful but with a topping or dip will be brilliant. Pete gave it the thumbs up! This is great news. This means we can have bread of sorts in the house! And it’s not carbohydrate at all!

Today I feel good again. I feel bright as a button when I wake up and I get on with so much. I have a few bits to do around the house today but I feel like a Duracell bunny. By the afternoon I tend to flag a bit. I definitely feel more alert and can manage and organise things to be done. Then it goes a bit awry.

I realised when I got up the other day that the flights I had booked needed to be checked for going to Germany. Bugger! I had booked them all wrong.. I got on the phone to BA and they were amazing. In fact they saved me money...Phew what a relief. But it just goes to show that my Bear needs to keep a check on me in this brain addled state.

Now I am just intrigued to know what will happen next with my head. I am being careful with washing and creams. I feel a bit itchy I think and I am wondering if my skin and scalp have been affected. I also wonder if in a few weeks if my hair will fall out. (just in time for the ball! Haha)

I no longer have a cough or cold! Yay! I mentioned this to Dr Schmid whilst I was there and he said it is likely the coughing has stopped because of the steroids reducing the swelling. Hmmmmm. I am not convinced. I was told by Prof Vogl that it would take two weeks from the TACE and the cough would stop. I am going with that theory. Let’s hope so. But what I do know it is a relief not to be hawking up all the time. I still have an incredibly sore rib but as I am not coughing so much anymore I can handle it..

All in all things are going in the right direction I believe....

 

For more information on the trial look up clinical trials;

http://clinicaltrials.gov/show/NCT01375842

 

Light and Love.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Mention cold and cough

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Triple Negative

Treatment number three done....

by Claire3. November 2014 11:19

 

I’m already back from radiotherapy number three.

Yes, times flies. I started last Thursday. Pete has been taking me to the appointments and to be expected I was really nervous for my first one. Things didn’t go quite to plan when we got the hospital either. As we pulled into a parking space, driving our 4 x 4 vehicle mounting a curb we heard a loud hissing noise. Nooooooo. A flat tyre. Pete said he would get it sorted whilst i went and checked in. Sadly for him it wasn’t quite that simple what with all these new fandangle cars. He couldn’t simply 0put on the spare he had to reset the on board computer and so on... I felt so bad for hm. He really wanted to come in with me to calm me down and there he was having to call out the RAC to get them to sort us out. It didn’t matter to me. I was called in and on when the mask. The bit I was dreading was the fear of wanting to cough and being under the mask for so long. It took about 10-15 minutes and I could feel my heart rate increasing. It was hard to know when the radiotherapy was actually happening too. But it was painless and I got through it. Simple.

The next day I was even more nervous. Mainly through the anticipation of it all. I have been desperately trying to get rid of the cough and cold. To top it off my ribs that had been hurting from over coughing and that morning doing a normal cough I heard a great big pop in my ribs. I was in agony. Oh bugger not more pain.

There was an hour delay on this particular day and I was getting myself in a tiz waz. I don’t know why. It’s silly really. And it was silly because this time they admitted they have problems with the machine the day before and it shouldn’t have taken as long. It only took about 5 minutes today. Wow, I can handle that.

So Pete and I left 2 hours earlier this morning to ensure we arrived on time. Morning traffic is a nightmare and it took us about an hour to get there. Not bad really. They actually saw me early and I was in and out in flash. Hence why I am now back home typing this.

The weekend was a mixed bag. I have been advised I should feel worse before I feel better. So far I have continued taking the same amount of steroids. I haven’t had any problems with headaches. Weird. Saturday however was an odd day.

I took my morning tablets a combination of medication and supplements. We went to the supermarket then I had a huge urge to vomit. It wouldn’t pass and I had to be sick in Tesco’s’ car park. Classy. I must have looked like I had a hangover from the night before. If only.

We came home and Pete was cooking us a lovely brunch and I was really hungry, yet had to be sick again. I always think it’s something I have ingested and immediately think the drugs/supplements, but then Pete suggested it is the radiotherapy side effects. I had quite a lot of sickness episodes when we were on holiday in France, before I knew I had the brain tumours.

I ate, felt great but then my condition declined as the day wore on. I felt shaky, drained, I had gone a funny colour and decided that I should feel sorry for myself on the sofa. I couldn’t sleep but felt rotten.

Yesterday was a different story. I slept really well. We got up and had breakfast and did the usual morning stuff. I didn’t feel sick at all. We went out and I had a lovely morning seeing my step son and doing a spot of shopping. Such a difference a day makes. One thing I do constantly feel is sketchy and frantic and it makes me shake. It does improve as the day wears on but I think that has to be the drugs.

Last Friday I had a call from a consultant at St Barts. I have been referred for a trial there regarding PDL1. A friend of mine had mentioned it and I decided to push to see if I am eligible. I didn’t expect them to be quite so fast moving at this stage. I told the consultant that Pete and I could visit to talk about it later in November when we had some free time and after Germany. She called and said that they needed to test my tumour sample, which the Churchill hospital still has from four years from my original surgery. But in order to do that I need to sign a consent form. I did try to blag it and say that I could do it by email. No way, Jose. That didn’t cut it. So she has asked to me go to down to Professor Schmids clinic on Wednesday morning. I had explained that i have radiotherapy in oxford and its very time restrictive getting here, there and everywhere. But she insisted and said I wouldn’t have to discuss anything, I could go back with Pete another time but let’s get the ball rolling with the tumour sample to see if I am actually eligible for the trial as these things take a few weeks. I totally agree with her but the logistics of everything seem crazy! So I’m booked for Wednesday at 10am in London. I have to get back to oxford for my late afternoon appointment for my very last radiotherapy session. I’m sure I will do it. Well I just have to. I have to find out if this trial is any good. It could actually mean not having to go to Nesselhut in the future. I will provide more on this trial when I have it.

As per usual it’s all go. Life is never easy. So what am I going to do with the rest of my day and time?
I have a lot to organise still. My friends are hosting the charity ball at the end of this month for my chosen charities; Breakthrough Breast Cancer and The Cancer Vaccine Institute and even though are doing most of the work we still have spaces left and things need to be completed for the auction.

If you like to attend, the ball is being held on Friday 21st November at Caswell House, Oxfordshire. The theme is Venetian Masquerade Ball. The costs of the tickets are £100 per person and so much of it is going straight to the charities. The suppliers have been amazingly generous. It will be night of glitz and glamour. If you are interested in finding out more and booking tickets please contact me on; glowtherapy@live.co.uk

                         

Other than that I still have to focus on getting well and that includes doing my normal inhalations and nebuliser and more. I haven’t quite got back into exercise and know the importance of that. I just have to find the motivation. I also need to get back into meditation. Today Deepak Chopra starts another 21 day challenge on the Energy of Attraction. If you would like to join here is the link;

https://www.facebook.com/ChopraMeditation

 

Life stills very manic to me and I am not quite the girl I was. I have lots to look forward to though socially and treatment wise and just have to get used to living a bit out of my comfort zone for a while.I do feel positive yet I am a little confused if I am doing the right thing. I can’t decide if the drugs and supplements are right for me. Until I stop taking steroids I don’t think I can answer those questions.

I have adopted the ketogenic diet now. I feel at ease with it. It went against the grain because of all the meat included but I do feel I need to make sure I don't lose weight. I worked out my BMR and the number of carbs, protein and fats I am to consume. It’s a bit of a science but I have to try. If you would like any information Patricia Daly is brilliant and there is also an ebook I work from with 2 weeks worth of meal plans available.
http://patriciadaly.com/blog/ketogenic-diet-for-cancer-ketogenic-diet/

 

I have been thinking, ‘What was I doing differently when the tumours almost disappeared last year?
I know I was on dc therapy monthly and I had been using Capecitabine, but what other things I was taking that are different to now. How did it work then but then stopped?  It has to be something I did. I can make it go away again.

 Luckily for me the cough is now going. That means the cold is going too. I haven’t coughed through the night for a few nights. This means the lymph nodes must be improving. Prof Vogl said it would take two weeks from my first treatment with him for this to happen. Weirdly it was two weeks to the day that I stopped coughing. I wonder if the cough would have subsided sooner had I not had a cough and cold. This is a really positive sign. It gives me so much hope and now I can’t wait to find out from my next CT scan what is going on in there.

Treatment number four tomorrow afternoon.....

Now what is it I have to do?.....Space cadet. X

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Triple Negative

Progress for radiotherapy...

by Claire29. October 2014 13:05

 

I have had some progress. Yesterday I was booked to see Prof Harris for my usual clinic appointment. On Monday, eager as ever I emailed all the doctors secretaries and asked about when I would be seen for radiotherapy. I was told to call the radiotherapy department. You don’t have to ask me twice. I got straight through to the lovely lady who said she had found my paper work and asked how long I had been waiting. I told her a month, true and a little bit untrue. She called me and asked if I could go in the very next day, so yesterday. Yes! It worked out perfectly combining it with Prof Harris; Two birds, one stone.

I told reception on my arrival that I was going to radiotherapy after seeing the Prof. They saw me almost immediately.

Prof was lovely. As usual. He actually said he thought going to Prof Vogl was a great idea. This surprised me a bit as I got the feeling he didn’t approve. We advised him that Prof Vogl had advised me to take capecitabine again on a very lose. He said that I should taking it immediately especially as I am going to be on radiotherapy because it can affect the results. Really? He also said it is pointless taking it when I had responded on it then it stopped working. Blimey...That was lucky then. I have stopped taking it.

He asked about me cough and I told him that I was full of snot (too much information?) and stuff. He said it was difficult to tell if they lymph nodes were improving. I also told him that my side was in agony and he remembered how it was six months ago.

We went straight from there to radiotherapy. The male nurse was nice albeit a little bit of a jobs worth and when he told us the dates for having ten days worth of treatment our hearts sank.The dates overlapped the dates for Germany to see Prof Vogl and Dr Nesselhut. Bugger....

We told the nurse and he insisted on calling Dr Oliveros. We tried to explain that it wouldn’t matter we would move the Germany dates but he said he felt he should tell her anyway! How irritating..The nurse then started saying it might mean we can’t proceed with doing the mask making and ct scan if we have to put it off! Argh!!! Seriously how annoying was this man?

We waited and decided whatever the outcome we wouldn’t be going home without the mask being made.

The nurse walked in and said that Dr Oliveros had decided giving me twice the dose over a period of five days would be just as good. What? Wow! This was even better than I expected. I didn’t want to go hospital for ten days anyway being trapped under the mask.. This was a right bonus!


Whoop! So, on we got with making the mask. This is where the male nurse actually ended up being lovely. He didn’t mean to stress us out and actually was such a kind a gentle man (Pete thinks a bit creepy! Haha). He explained what he was going to do and how the mask would feel; hot then cold and I would be in it for about 8 minutes. I was very concerned with feeling like I wanted to move and also wanting to cough. He put on calming spa like music and then stroked the contours of my face and spoke really calmly. Now as a beauty therapist this was brilliant. It was highly relaxing and I really appreciated his concern and care. What a lovely guy. He kept reassuring me and saying I was doing really well.

And that was it! The mask was made. I then had to go and have a ct scan with the mask on. This time the mask was a bit tighter and I was worried again that I would feel the urge to cough. But I held it together. Thankfully.

                                                   

Overall it was a really good day. I have dates starting from tomorrow for radiotherapy and then I can go to Germany for treatment.  

I have been advised about the side effects of radiotherapy; such as hair loss and dry skin, headaches and tiredness. Prof Harris said I would stay on steroids for a short while then the radiotherapy should work over a six week period. I will be scanned in December.

I am not sure how quickly hair falls out with radiotherapy but I guess I will find out soon enough! If at all...

So tomorrow it starts... I feel quite high spirited. I am feeling pretty well.

Let’s keep that going...

X

 

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Triple Negative

A proper update....

by Claire27. October 2014 12:15

I haven’t been ignoring you. I usually say it’s because I have been having too much fun but the truth be known these past days have been hard and I meant to let you know what I have been doing but I just haven’t felt up to it.

Most days I am walking around in haze. The headaches have been hurting; the cognitive loss has been hard but today is a good day. I seem to have all my faculties and I am right now feeling good. Well sort of...

So what’s been happening over the past few weeks?

I think I will work backwards. I finally had a meeting at St Bart’s where I was told I had been accepted for gamma knife. But then on Thursday I was called by Doctor Oliveros to be told that she had received a letter from Dr Plummer and he had suggested that right now I should have whole brain radiation. I was confused. I said I had received an appointment to go down the very next day. She said to go to would proceed with the whole brain radiation. Right... I hate being messed about.

We headed to London in pursuit of gamma knife. We waited and the registrar we saw had no notes on my ‘story’. The problem is when asked any questions I am getting to the point of not being able to answer. It sounds so weird but I am losing all ability to answer questions. It makes me anxious and I need Pete by my side. I have good and bad days. That day was a bad day.

Luckily Pete did what he could and we pleaded with them to give us the gamma knife. The reason Dr Plummer suggested that I have whole brain radiation is because there are more than likely going to be more than four tumours. I guess I was hoping I could have it all in one go and it would simple, one visit all done. Pete had suggested that having whole brain would be better. I guess the down side is that I have had to wait for so long. Can you believe they only have one multidisciplinary meeting a month?

The other good thing was that I got to meet Dr Plummer and he now knows who I am. The registrar got him into the room and he discussed my case with me. Pete was very patient and really tried to express his concern but it was ok. I took it on the chin. I was gutted, mainly to have waited for so long. I had the MRI on the 1st and it was now the 24th every day the headaches getting worse.

The day before I went down to the Care Oncology Clinic in Harley Street. There I discussed details of being on Metformin, Mebendazole and Atorvastatin. It was a bit weird. I have been accepted onto their plan and will be given the prescription. I am going to take it in the hope it helps me further. They actually work with Professor Dalgliesh and Professor Stebbing so they are in good company.The problem is that when I returned home I couldn't tell Pete what I had happened. I just knew it was good!

I have also been to the hospital for five hours of treatment. I had to have globemular filtration rate. This is preparation for having carboplatin, that I intend on having possibly. I had to have my bloods taken every hour for five hours..... Oh dear god.

Before this it’s all a bit of blur. I have spent almost every day on the sofa, wandering around the house and watching my house get dustier. I’ve been lost and sad but every night Pete comes home to cheer me up. That’s the only time I am really happy. Until now. I’m having a good day.  

The weekends have been great. I had my best friend Lizzy and her hubby turn up for Sunday lunch. Sadly that was a bad day and I wasn’t feeling my best but being my best friend she sat with me until I felt better.

This weekend was amazing. It was Pete’s business 25th birthday celebrations. We had planned it for months so I had no intention of not going. It was being held on a boat on the Embankment in a posh venue. I wasn’t feeling hundred per cent but having people around me helps. Plus I also find a spot of retail therapy really makes me happy! Nothing new there except I make decisions quicker. I really know what I want now!

I was a bit anxious about being left on my own without Pete as I didn’t want to trip over my words or forget something I wanted to say but thank fully I held my own and did ok.

It was an emotional night and we invited some of our friends and old staff and new staff and clients. We had a blast. Everyone was concerned about me but I wanted it to be about Pete and his achievement. It was nice seeing everyone and having plenty of cuddles.

                                                        

 

 

So I have today been trying to get hold of the hospital here and thankfully have got through. It pays off to be nice to people. I am going to see Professor Harris tomorrow for a clinic appointment but have also been told that I can go to have my mask fitted in radiotherapy. I have to wear a mask over my face. Luckily the treatment is only ever about 3 minutes long so I won’t feel claustraphobic.

 

On Friday I was lucky enough to come home to a card from Davina McCall! I know who organised it for me but what a day to get it.... It really perked me up.

                                          

 

A few weeks ago on the day that I was going for my MRI I had to do my final test for the health coaching course I had been doing all year. I sadly failed by one point... I couldn’t believe it and was so gutted. I decided to not worry about it but felt absolutely mortified that I had done the course and failed it. Well they let me do it again.... and I passed! Yeha!

I said I had an appointment with Dr Kenyon from The Dove Clinic recently well I had to cancel it. I couldn’t drive, obviously and I just have to put things on the wayside. I will deal with it when my head is clearer...

My chesty cough is still there. I have got a cold though and without too much detail I am bringing a lot of yellow stuff out of my nostrils. It’s hard to wonder if that what is causing my cough. Prof Vogl said that it would clear up in two weeks. That’s about now... The thing is I coughed so hard yesterday that I have started having those pains where I can’t move my side, just like before. It’s not what I need right now, and I hope it goes by tomorrow... Please...

So in one sense I feel like I am getting somewhere and the next I am not. It’s been a long month.
I really thought I would be into the treatment by now. Thank fully Prof Vogl has been done. I am returning in a few weeks for my next visit. I will also be having treatment from Dr Nesselhut and I may be seeing Dr Seibenhuner. Let’s get charged up with whatever I can have!

I am so pleased I cancelled my clients. This time I don’t feel guilty about having had to. I just needed to.

I just want Pete to know how thankful I am to have him. He has been doing everything for me. I am like a lost sheep right now but he gives me all the love I can ever need. Give me my brain back and I will fine. I can then deal with my chest and lungs.

I want to thank everyone for the support they have been giving me. I feel overwhelmed every day.

Thank you will never be enough.......XX

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Triple Negative

This is Bear.....

by Claire20. October 2014 18:20
Hi this is Bear,
 
I started writing this as an email to Tom, whose loved one is a survivor, but as Claire is feeling a bit under the weather I thought I would step in and make it a blog for all the Bears. Husbands, lovers, brothers, sisters, children and friends who are helping a brave lady through this terrible time in their lives.
 
And there it is. The first thing to point out,  we always say “terrible time”, but the most important thing is to make it the greatest time, none of us know how long we may be given on the earth and we are all, after all “terminal”. So Claire and I have tried in everything, to make the demands of canSer fun and exciting but I feel that the best advice I could give, is to look at life within simple elements.
 
The most important thing is to have a plan. We created the ten point plan on day 3 of diagnosis and so far although the components have changed the plan is still the same (http://www.triplenegative.co.uk/tenpointplan.aspx ). Having a plan gives you strength and helps to adjust as better treatments evolve.
 
Then you have to LIVE. It can be easy for canSer to consume. For every thought and action to be related to the disease. Whilst you are fighting, you have life and the opportunity to do what you can to make sure that you drain every drop from that life. Leave no regrets and live with canSer as a perceived issue don’t live a life of canSer.
 
Live in gratitude for all things. I know that platitudes are painful, but we both truly believe that life is not measured by the breaths you take but the moments that take your breath away. We have been so blessed, in love and friendship, in the opportunities we have had and the life we have been able to live. Things that for many who live until 90 will never be achievable. Every breath of wind on a sunny day, the kindness we see around us, all of these things help us to face every day with love and light.
 
And finally – don’t compare. Never look at statistics they mean nothing. If 1 person out of 100 survives then that is 100% survival for that person. Be that person. canSer is the disease, which we try and classify, but we should be looking at every patient and as far as I know everyone is different -so never compare.
 
I hope that in some small way this helps. I wish you all love and never forget that we are million strong and that the medical world is changing quickly. In as little as two years we could have a cure – let’s all make sure we are here to see that day.
 
Bear
 

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