A visit to Nesselhut….

This week has been the usual busy time. We had a great weekend working in the garden and doing more jobs at the new office. It’s really taking shape now. It felt good ticking things off the list. To be honest it can be quite simple to feel good. For me it is achieving things and making the pressure ease off. I spent plenty of time sitting by the fire and keeping warm- the true kitty that I am.

The weather may be nippier than normal but it has been really beautiful. Yesterday I needed to get out there and feel the cold but also to take in the autumn sun. The trees are so beautiful this time of year, so I went out for a walk. More than I can say for Germany. We headed over to see Dr Nesselhut for a vaccination for DC therapy. Either way, treatment. Their weather is very similar to ours but it was very grey and uninspiring, but I didn’t have much time to waste so it didn’t really matter.

I had the combination I usually have which includes oncothermia (local hyperthermia) which I quite enjoy as it makes me feel warm. I had an infusion of nivolumab and they took bloods in preparation for my next treatment. I was informed that my red blood cell count is down to 8.8 now. It has dropped very slightly again and my blood pressure is low. I was also given Rigvir a viral therapy in place of Newcastle disease virus which is now classed as illegal there.

We had a long chat with Dr Nesselhut. It’s great hearing all about everything and successes he is having. It sounds like most of the success is usually in people who are very advanced. They seem to have spectacular results such as complete remission. It makes me wonder if when the body is so full of cancer cells that the DC therapy works at its best. I really don’t want to get really close to death before it works.

Our flight was late home and then every road leading home was closed! I am unsure as to why they decide to close two major roads at the same time! That is why yesterday I was ordered to relax and take it easy. I didn’t get dressed until lunchtime but I ploughed on with some emails and washing.

We did have some laughs whilst away. We hired a car as usual but from a different company. We were a little surprised to be given a ten seater minibus! Haha. So off we chugged in our people carrier. It was actually a lovely smooth ride!

I have been feeling a lot more positive recently but I am worrying about my bloods being so low at 8.8 when it should be 10-12. Although not anaemic (I was told it went to 8.5 then I would be).

I am going to stop taking capecitabine after having TACE in a few weeks and then I am going to take a break if possible from treatments abroad until the New Year. I really I can afford to that.

I have my three monthly CT scan this afternoon, which I only just remembered!

Dr Nesselhut did give us some new information on a certain drug and how it works on canSer but I can’t explain it. I will need the Bear to explain. So over the next day or so I will get the information down and share it with you all.

Life is still very pressured. I am hoping things will calm for my Bear too. I know that life is putting too much pressure on him. Work is a heavy burden and obviously it is necessary to keep earning money to keep me alive. I know that if I can work hard at getting better then that would make him feel less stressed. I do worry about him. I want to take his pain away so badly and just wish things could be different. If only he didn’t feel unsupported. Who should he turn to? We always off load onto each other. And that’s what being married is like, but we are both so full of emotion it can be really stressful on each other. I know if I mention sadness or worry or pain that it really stresses him out. Which is the same when he tells me how he feels and what pressures there are at work. I am trying to be mindful and meditate but clearing my mind is so difficult and I don’t even know where to begin to help Pete when he is so stretched for time by everyone wanting a piece of him.

We love our weekends and our time together. I think the weekends are such a relief and being good to ourselves and nourishing our needs Is essential and we really enjoy it.

We plan our meals for the week and eat lovely fresh unprocessed foods. We make plans for the future and our next holidays and breaks away; which are skiing and Christmas markets.

We plan on making changes to our home, and current project is a new patio.

And then we just sit snuffling, cuddling and loving each other. My favourite time. X

 

 

 

 

I’m putting my game face on…..

I’m putting my game face on….
Whilst lying awake in bed last night I made a plan… It’s time to get my game face on. I have to improve my bloods. My haemoglobin is low (around 9 when it should be 11/12) and whilst it doesn’t affect me that much on a day to day basis; things such as tiredness and almost blacking out if I get up too quickly I guess you may be wondering well if that’s all it is then why worry? I worry because it’s when the bloods are low that treatment knocks you for six and it becomes harder to maintain the same treatment levels and then infections creep in and then BOOM – its game over.
I have to improve them. Prof Harris said food and drink won’t do it but there has to be something I can do. So I am back to making my plan and getting on the case. I need also to exercise and make more muscle in order to have more red blood cells and then oxygenation will improve also.

With the winter season inbound we have thoughts of skiing in our minds and this means getting ski fit. I have barely exercised for some time now and the only way to do it is get a plan and get on with it. Pete and I devised a short routine that will get us both fit for skiing, in a few months, hopefully. I started today. My legs are shaky and I am certain I won’t be able to walk tomorrow but I plan on keeping on, even though I have more treatments in bound in the next few weeks.

As well as this I will be doing the following. Most of which I have been doing, but some are additions;

Meditation, yoga, exercise, heat and airnergy, supplements, green juice, fresh fruit and vegetables, symprove probiotic, apple cider vinegar in water, Bicarbonate of soda in water, turmeric paste- a spoonful every day). As well as this we have been meal planning our week’s food. It contains plenty of food made from scratch without meats apart from chicken and fish.

Gaining strength and improving my bloods is all that matters! I have to get rid of this lymph node that is pressing on my bronchial tube and I have to be as fit as I was four years ago. Feel free to share anything you feel would benefit me!

 

The Universe has my back.
On Saturday, I awoke feeling blue. Absolutely no reason for it. I didn’t understand why.
We went out for a few hours, doing more chores at the office but at least ticking things off the list, and then my phone rang. It was my brother. I have a big family although I don’t spend any time with them and in fact we have very little communication with each other. My brother Mark is ten years older than me and growing up I was his favourite, probably because I was the youngest. He called me Munchkin. My immediate thought was ‘Oh God what has happened?’

I have felt sad for a long time that we don’t have much communication but he called Saturday and said that he was at work having a tea break and thought of me and called for a chat. It was brilliant. I love him and miss him and it really filled me with happiness. Pete said when I put the phone down that the Universe was listening to me and that Mark called because I was blue. Then immediately after that my phone rang again. It was my dad this time. I had called him the day before and we chatted about our house and what needs to be done and how we don’t want to spend too much money on it. So he called me, as he had been awake half the night thinking. He offered to come up and do our patio for us and save some money as we wouldn’t have to pay him. He just wants to see Pete and me and feel useful. He is in his seventies. That struck a chord with me too. He wanted to feel useful. He said he will bring my other brother to help and they can come in November to get it done. Whilst here he said he can do some other jobs too.  I put the phone down and told Pete and filled up with tears. I couldn’t believe what was happening. I was so touched and I am so pleased he has offered because the work he does is of such a good standard. That completely changed my day and my mood and I feel so excited and happy.

Sometimes when you least expect it the nicest things happen. I have always been so lucky to have such supportive friends and family and even strangers. That’s enough to get the drive to fight even harder.

 

The rest of the weekend was perfect. Pete and I had lots of cuddles and warming up in front of our fire. I am a typical cat. I sit as close to the fire as possible and sleep. I am so grateful to Pete for the way he is with me. He knows me and my needs and I am so lucky that he just wants me to be happy and will do anything to make that happen. If others have anything as close as what we have then they have won the love lottery.

Massive gratitude pouring everywhere!

 

Light and Love… X

The universe is being weird….

Life’s all a bit weird at the moment. Things that are happening in the world around us is mind boggling… (Donald Trump campaigning for president is one of the weirdest things ever!)

This year has been a bit of a year for weirdness. Life as we know it is ever changing and not always the way we want it to. Brexit is a huge thing, world leaders changing, wars and uncertainty everywhere.

Living with canSer is uncertain enough but when everything else around you is also up in the air it can make for quite a hard time.  I have loved this summer and I was so sad and reluctant to see it finally leave. I dug my heels in as much as I could but I couldn’t stop the season from changing and now here we are almost at the middle of October.

I feel unsettled, unnerved. For canSer patients control is something we so desperately want yet it feels like I have less and less control over my life and this disease than I ever did. I’m not saying there is no control over my disease at this point but I feel I’m teetering on the edge of a cliff. Everything is so nearly going to crash around my ears and there is no way I can save it

What do I mean? Well physically I am out of control. I have not managed to gain control of time management so feel like I am bouncing from one wall to another trying to get ‘everything’ done. What is everything? Normal day to day things plus a bit more….. I haven’t managed to get my groove back with my morning rituals yet. This is not good.

I haven’t been feeling my best since I went to have TACE last week. Obviously I am not going to feel 100% as it is chemo but I have felt really cold. So cold I am wearing layers in bed and gloves in the house during the day. I simply cannot warm up. I am anaemic so that’s not helping. Feeling unwell has meant I don’t want to exercise and actually couldn’t after having surgery. Exercise would in fact sort the cold issue out, but there is that chicken and egg thing. It’s mainly due to anaemia and my blood count being so low. I just stop talking about it and do it. Get that blood pumping around my body.

Treatment at Prof Vogl’s last week was good as always. As ever things are never the same twice and this time I had the surgery on my left side. Maybe I am more sensitive but it hurt more therefore the Prof gave me more anaesthetic, leaving my left leg really numb for much longer than it should.

I did collapse at one point in the hospital corridor. I couldn’t feel my leg at all and it went from under me and I went down like a ton of bricks in a heap on the floor. It didn’t hurt at the time but later my knees, ankles and feet were really sore. Now it’s just funny to think of me in a heap… So very Del Boy!

I’ve been well looked after by my Bear since then and over the weekend but the usual side effects come and go. A bit of nausea, sickness, feeling generally low and we all know what that does, sadness and fear creep in. Sleeping is still a challenge as I still have the cough. The cough is due to a tumour on touching my bronchial tube. Now this could be inflammation from the tumour that was ablated in August but either way it worries me and it’s really annoying. I have to sleep on my back so that I don’t get irritated by it. This is not good sleep. Too many dreams and weirdness happening.

See there it is- weirdness again. Even X Factor is really weird this year!

So there is the physical side of things. Mentally I am all a squiff. I can’t focus on what needs to be done. One day is good the next is all over the place. I have no desire to think about holidays or Christmas. I just want peace. As does my Bear. I worry about him and how he feels as life is so very difficult for him also. Work has its ups and downs and things can feel like they are ganging up on one. It’s finding a fine line. My list of things to do keeps getting shorter then longer and this is the same with trying to have a balanced and healthy life.

We keep putting so much pressure on ourselves to maintain a happy, memorable life but the truth is it’s not possible to live like that. I am desperate for some time out. I know- that’s coming from me! But what I mean is- time out from myself and my thoughts and my fears for the future.

I am so aware that with my bloods being low, that infection is very easy for me to catch. And I also know, that is when life can ebb away like a tablecloth being pulled from under the crockery. It’s so fast but then it’s all over. Obviously I don’t want to be ill or die. But I do need some normality and I am just not feeling it right now.

I am certain every canSer patient and their loved ones wishes for normality.

I know Bear is desperate to have a quiet time going into autumn and winter in his home life, his mind-set and his business. We so want to have it all but we can’t.

I know I am rambling but this is how my head is. I feel tired. My body hurts. I don’t know why, as I do rest a lot. But I don’t have routine and focus. I have not been listening to my ten point plan. I need therapies to help with the unloading. I need mindfulness for my sanity and clarity. I need focus so that I can help in business. I need happiness and laughter as it is so healing. I need good nutrition to heal my body. And I need to love…. This never goes away but maybe it’s not shown as much when I am fearful.

 

Treatment still goes on. I am having a scan at the end of this month then I am off to see Dr Nesselhut for more immunotherapy. There I will discuss and maybe book for photodynamic therapy- finally.

Prof Vogl keeps talking about me having a treatment holiday. I don’t really know why. He doesn’t say much. He did show me images of my lungs before I left last week. The one that was ablated is necrotic and visibly holey in the middle. I so hope that it stops growing now. The left lung has some very small tumours and he doesn’t seem hugely concerned about them. I wish they would all just stop. Give me time and let me have strength to carry on. Other than my cough and low blood count I am ok. I don’t have any other illness and nothing should hold me back from having a very active and happy life.

 

Today is mental health day. For us survivors and those close to living with terminal illness, mental health is something we all have to deal with. Life is so very weird and is getting harder and harder to keep normal and un-weird! I’m not sad. I don’t feel sorry for myself. I just feel weirded out by so much stuff. And that is all to do with my head, first and foremost. Can I have a new one please?!

 Now my website has been saved by the brilliant Laurence Caro; https://www.carocreative.uk/, I will be going back to my ten point plan and starting a fresh. I need reminding- as habits need forming again.
If you wish to join me then click on the link;
https://www.triplenegative.co.uk/ten-point-plan/

 

If you feel drained by this blog I apologise, but I know that the Universe is in a pickle at the moment . We’ve just got to hold on until it settles down and try not to be weird.

 

One final thing- It’s Breast Cancer Awareness month and our lovely dragons are in the pink showing support again…. What are you doing to show support?14606518_1126236044141108_6150083754488454713_n2

 

Love you all. X