Live your life, be free.
I want to write more often but life is so hectic! I have gone from doing very little and feeling lost at times to now doing so much I am having trouble getting time to do everything. June is always busy due to it being my birthday and even though I had intended I wasn’t going to make a meal of it this year, I kinda have!
A few weekends ago we had arranged for our friends to come and stay with us. As it was technically my birthday weekend we invited more friends and made a mad weekend of it. We set up a party/relaxation zone out on the decking where we hooked up the tv, stereo et al. England rugby and football were playing so the boys were happy. The girls snuggled up on the sofas trying to avoid the rain and the kids ran riot. One of my favourite moments was when I appeared wearing a Chewbacca mask just like the one the lovely lady wore in the video online that went viral recently. The kids were not impressed and I made them cry! That’s standard in my house it seems. Haha. Â Pete cooked the worldâ€™s best paella and we were all had a whale of a time.Â The next morning we were a little sore headed but it was worth it. Our house was like a bed and breakfast, full of people and fun. We loved it. That was my first birthday celebration.
This weekend Peter and I went to Cornwall to the amazing Scarlet hotel for the third year running as my birthday treat. We love it there. Come rain or shine you simply can have the most restful and exhilarating weekend break. We attempted to surf and body board again, sadly, not very well but the water felt amazing and cold. The sun came out on Saturday and we took advantage of it by resting in the grass outside of our room. I had some therapy which I was longing for. I had an Ayurvedic treatment called Shirodhara which involved pouring hot oil on the forehead over the third eye. I felt like I was only there for ten minutes but an hour and half later I drifted back to my room. The sound of the waves, the smell of the fresh sea air gets me every time. We both simply felt so much gratitude and love. I cannot wait until next yearâ€¦â€¦.Big sigh.
Treatments coming up
In the next few weeks we will be returning to Germany for another TACE procedure with Prof Vogl as the last one has been hugely successful, from what I can tell.
The uber annoying cough has gone completely. In the last few days I have even noticed the whistling and wheezing from my lung subside which makes me think that the lymph nodes are really returning to normal and maybe the lung is reinflating. I can feel some clunking in there but who knows what that is without a scan? I know for certain my walking up hills and stairs has definitely improved and this can only be from my lung allowing more air in, plus exercise improving muscle tone, therefore improving oxygen in my body. This is a huge relief, for me but I think more so for Pete as he could see the discomfort I was in.
There is a BUT though. A few days ago when my cough was 100% gone I started getting pain my ribs and chest again! Nooooooo! Itâ€™s so unfair to go from one pain to another so quickly. It seemed so unfair. I wondered had I over done it on exercise as it was so painful. I couldnâ€™t determine whether it was muscular or nerves again. Then Pete made a really good point. He said that the cough went right before the pain in the ribs started, therefore surely that meant my lung was reinflating and causing contact with those nerves again. That would make so much sense. Â It was causing issues (and tears) for one day. Now I am getting more mobility and I went in the sea without too many problems. Itâ€™s there, but I am not letting it hold me back (and hopefully not moaning too much to drive Pete to distraction! Haha)
In a few weeks we will be returning to Dr Nesselhuts clinic for my next vaccine and complementary treatments. I have been informed that NDV will not be used. It is always worrying when things change but I am hoping to speak to him tomorrow to find out more details on how they will prepare my dendritic cells as they are not priming them with NDV.
Research has been interesting lately. There has been many new things popping up which I try to post on my Facebook page for all to see and share. The newest development we have seen is photoimmunotherapy. This is essentially using photodynamic therapy (PDT) and combining it with immunotherapy and targeting cells. This is something similar to what Dr Nesselhut had suggested to me by seeing Dr Weber who offers PDT. Sadly I am still trying to get Dr Weber to communicate with me. Another phone call to make.
To be honest, that is a real bug bear for me. I find it very distressing that doctors; professionals whom we rely on and need advice from, simply cannot be bothered to reply or contact us. We, as survivors, need rapid response and actually, any response, all of the time. I cannot tell you how many emails I have to make, phone calls and general prodding I do to get a response. I believe this is why so many canSer patients give up. It makes planning treatment and knowing what the next step will be, so hard. If only there didnâ€™t need to be a next step. But there is a need. It doesnâ€™t stop or at least it hasnâ€™t stopped for me yet.
I need therapy! You all know that anyway!
I thought to myself the other day how much I need some therapies. Relaxation for the mind and body. The treatment at the weekend helped and this Thursday celebrating once again for my birthday, (Yay birthday mardi gras!) I will be having a spa day with my mum. I am so looking forward to it! Spoilt but needed. But other than going to yoga for an hour once a week I need regular treatments again like I suggest in my ten point plan. I love being given referrals. The problem is most of them are miles away. I will get back into doing something regularly when my hectic life will calm down.
Not only are we busy with keeping me well, Pete has to run a business. Not an easy thing when you are not around as much and also in todayâ€™s climate. He is going to be relocating his business which I am helping with. There is so much to be done and currently I am not hugely stressedâ€¦ much! Itâ€™ll all sort itself outâ€¦ eventually. I am enjoying it and it has given me focus but I do not like getting up early to go and meet contractors! Haha!
Additions to Supplements
I am so oversensitive about my body. I feel aches, pains and changes and this can be quite difficult to live with. I feel pretty strong and healthy right now. I have started taking Flavon supplements which come in a sort of jammy /gel format. I take the â€˜Green plusâ€™ and â€˜Max plusâ€™ and â€˜Joyâ€™ currently.
Here is the link if you are interested in looking it up. Itâ€™s suitable for everyone, not just canSer patients and even children. I have Pete on it too and I hope for it replace some of the supplements I take via tablet form. Plus I want to increase my green vegetable and superfood fruit intake, this helps me do that without the need for tonnes of fresh fruit and veg.
Recently I have been using body cream by to get my skin super hydrated. I use products that are free of everything nasty so have been using a body lotion containing shea butter and coconut oil by a brand called Jason. Not thinking much of it I used it daily and have recently noticed that it got rid of a random rash I had lingering for months, plus my mastectomy scar has almost disappeared. It has never bothered me it being there but I have really noticed the lack of it. Itâ€™s amazing! I would highly recommend it; http://www.jasonnaturalcare.co.uk/coconut-lotion/
Phewâ€¦ there is so much to recap on and I forget what life has given me in the last few weeks that have passed. I sometimes wish I could put my thoughts down without having to sit at a computer and type- That would take away the element of journaling that has been so therapeutic for me over the last four years. The biggest feelings of love and gratitude continue to envelope both Pete and I and we wish we could live in this bubble forever.
Today is the longest day and the official start of summer, (despite the lack of summer temperatures and sunshine). There will be a strawberry moon too. I hope to see it and enjoy every minute with my Bear.
Light and Love to you all! XX