Friday night I watched Text Santa, a charity event on tv that helps raise money for three charities. They focused on stories of certain families that have been helped by those charities. One was making wishes come true for terminally ill children and another for Macmillan nurses who care for patients and their families whose life is being cut short by terminal illness.
They do amazing work and I was left feeling positive in many respects with the work that they do but what really upset me was how accepting the families were of their diagnoses. I felt really upset, firstly that their lives were being cut short and they were leaving their precious loved ones behind but more upset that the families were accepting what their doctors had told them.
Now I don’t know the ins and outs of all the stories and maybe they did fight for their existence but it seemed and came across that they were just accepting the news their doctors gave them. ‘You will not live to see your children grow up’ or ‘your child will die before their next birthday’.
I wanted to shout at the tv, at them and wanted them to fight. Don’t leave them behind. There must be more that can be done!
We cried a lot, Pete and I, as you do, watching the footage on the fundraising show and I am certain they must have raised millions of pounds but I found myself sobbing and feeling really frightened.
Am I the one that is different? Should I simply sit back and accept the news that I was given 3 and half years ago? That I am going to die and to put my affairs in order. Enjoy life as you haven’t got much time left.
I believe that over the last three years I have done everything that I could do and if I hadn’t I know for certain I wouldn’t be here now. The progression of the disease should have meant more complications and certainly death, especially with the diagnosis of the brain tumours over a year ago. I know how quickly one can deteriorate at that point and I am just so blessed that I didn’t think that at the time, instead we went into overdrive and had as much treatment as possible. Without the love and fight from Pete I know for a fact I wouldn’t be as well as I am.
It is only a matter of time. There will be a cure or maintenance of triple negative breast canSer and all other canSers that will keep us fit and healthy with very little side effects. It’s probably already there. It’s just the pharmaceutical companies are holding back and making money. It’s beneficial to them not to let us get better. It’s better to keep us ill.
Look at my friend who three years ago was told he had terminal lung canSer who now has had the all clear… It’s not fake. I personally know him and he did it with a combination of treatments and supplements and self-help. It can be done. And everybody’s disease is different.
I know we don’t get out alive and that some die sooner than others but I feel very passionate about making sure we at least give it a try and stay with our loved ones for as long as humanly possible.
I’m still banking on being here for decades so until there is a treatment offered on the NHS that is suitable for all then I will continue looking for answers, with the support of my Bear.
Today alone he has sent me many links to research he has found. He breaks up from work for Christmas today. I can’t wait.
Jingle bells, jingle bells, jingle all the way!…..
I’m feeling really festive! Christmas presents all wrapped, secret Santa gifts, Text Santa evening tonight raising money for charities and everyone wearing their Christmas Jumpers….Eek! I’m like a big kid.
The last few deliveries arriving today with the last few presents that I have bought for my nearest and dearest. I simply cannot wait! I’ve got all the twinkle lights on and I’m loving the Christmas tunes on the radio.
Today most of the schools are finishing for Christmas holidays as well as the usual daily tv programmes. Then next week is my favourite time. Wall to wall Christmas programmes and movies… I just love it! I always did love it as a child too. A whole week in front of the TV! Haha!
But all that aside I’m looking forward to sharing the gifts we have bought and made with those we got them for. Mum is coming up next week and we will be having the kids over and our newest member to our family, our grandson. (I know we are not old enough to be grandparents, but boy, we are going to be very cool ones!) Very exciting times.
It dawned on me today that I have made it to another Christmas. Silly I know, to think like that, but I honestly didn’t think I would make it this far. I didn’t think I would make it to my 40th birthday let alone Christmas. And now every single year is another milestone. I’m feeling remarkably well apart from a few niggles but on the whole I am living, thriving and surviving, with bells on!
In my last blog I was deliberating my next round of treatments, especially seeing Prof Vogl again, this time for radiofrequency ablation or microwave or LITT, which ever he decides is best. It wasn’t a case of whether I should have it but when, as Prof wants me to have it the first week of January.
Well we have decided to go for it. It’s going to be hard as we are going by car and I am fretful about having it done. I hate the thought of being awake whilst having something so intrusive, but I am sure I will be fine. I just want to start the New Year with a bang and really ensure I am getting on top of kicking canSers’ butt. Next year, 2016, is going to be even better than this, and this year has been EPIC! I simply cannot believe how many amazing memories I have or this year and all the happiness we have enjoyed. I am hugely grateful. 2016….. is going to be awesome! You never know we may be able to really help find a cure….
Pete has been researching a lot as usual. He is trying to find the next remarkable thing that will blow tripe negative breast cancer out of the water.
He came across this news, stating they think that lifestyle could have an effect on whether or not you get canSer; http://www.bbc.co.uk/news/health-35111449
Well we know that but why then aren’t doctors and researchers asking every single person with canSer questions?
This has made Pete and I want to design a questionnaire to see if we can compile our own data. Wouldn’t that be worth doing? We now know that there is a charity doing a similar questionnaire on ladies with secondary breast canSer but we feel asking people about their lifestyles when they were first ever diagnosed would be hugely beneficial. At least then there could be more preventative healthcare involved. We posted this idea on facebook and the response has been very positive. So we will get cracking and get this up on the website in the New Year.
We have to keep going, we have to keep figuring this out. The answer is out there and we want to keep as many of us survivors, surviving.
Right, I’m going to dance round the kitchen to Christmas tunes and wait for Mr Postman to arrive…. Fa la la la! X
I feel like I am getting back to normal..ish . The last few weeks have been great. Time with friends and last weekend we went to Frankfurt. It was for treatment but we went a bit earlier and met friends and experienced the Christmas Markets. We feasted on German sausages and drank mulled wine… and felt suitably warm and fuzzy.
Sleep however wasn’t working for me and maybe it was the worry of having to have another TACE procedure early Monday morning. Monday came and off I went for my 9th or is 10th TACE now? I have lost count. Luckily for me I didn’t have much waiting time as you know how edgy I can get!
This time TACE was different yet again. Not the procedure but the way I responded. I felt really sick and starting vomiting whilst in recovery. I felt terrible for the visitors having to watch me throwing up but I just couldn’t stop and this got worse as I hadn’t eaten or drunk anything.
Whilst waiting to see Prof Vogl before I left I even had to throw up in his office. He kind of said ‘Merry Christmas’ and ran out of the room. It was at that moment that Pete arrived… Thank goodness. Just like a small child, I spotted my Bear and started crying. Prof’s secretary gave me some anti sickness tablets and told me not to worry.
What with me throwing up I hadn’t got time to ask lots of questions, which I am sure Prof Vogl was pleased about. It seems that the tumour that he focuses on in my right lung, the largest is now small enough for me to have LITT or microwave ablation. I was met by his colleague who said I could have an appointment at the beginning of January starting at 6.30am!
I had radiofrequency ablation a year and a half ago at St George’s in London, but this was done under a general anaesthetic and I was told I couldn’t fly for some time after the procedure. It seems with Vogl I am going to be awake whilst it is being done and I am able to fly home no problem. I think this is wishful thinking as how do they know that my lung won’t have a few problems?
I am unsure. I definitely want it ‘burned’ as Prof Vogl says but do I risk flying? I have to be there for a few days and it is going to cost more than the TACE. The thing is the date they have given me is only four weeks away. We already have Dr Nesselhut booked for the second week in January and what with the cost, logistics and commitments with work it seems impossible to do so soon.
I decided to ask Prof if he thinks it would be ok to travel there in February instead. I like to have something once a month rather than all at once. It is too much for me and for Pete and his business too. His reply was to say that hopefully the tumour wouldn’t have grown too much in that time.
Not the reply I really wanted. I guess his nose is out of joint as I a, going for treatment with Nesselhut but surely it won’t grow that much in 9 weeks? I am having other treatments at the same time and they all contribute to the shrinkage and stabilising of the disease. It’s very narrow minded to think it could be just one thing assisting in the decline of the disease.
His reply put me into a spin. I was feeling very bad yesterday. I slept for only 3 hours on Monday night. Poor Pete. I got up and cracked on with things that were running around my mind as well as doing washing, ironing, and anything else I could tick off the list easily. But the plan was to get that done and then get on the sofa and rest for the afternoon. That was the plan only I couldn’t sleep. I had received an email to say a delivery wold be arriving within a time frame. This meant I was worried about falling asleep and missing it…. Urgh… I was wrecked and felt completely crappy.
My muscles ached, I felt nauseous so I took more anti sickness tablets, nothing felt right and I guess that I was so exhausted I was hugely emotional. I wanted to be scooped up and told everything was going to be ok. Amidst the emotion I was trying to organise the next visit to Vogl. I still haven’t made a firm decision on dates.
Of course I would like to do it all at once but logistically it would mean having about a week and half off work right at the beginning of the working year. We would drive in case I did experience complications so that would mean extending the trip. This means more time in hotels and the stress just increases. Plus we have to raise the funds.
And there is one other thing. We do want to have a normalish life… Maybe I am being narrow minded and that if we went full on into kicking canSers butt even more than I have been, would that eradicate it? I don’t know? I have been really confident in the treatment plan lately. I do what I do at home, I have everything that Nesselhut has to offer and then I have been having TACE and now the next step is to have LITT or MWA (burning the biggest tumour) So amongst having all that going on we also want to be a couple and experience life away from canSer and the winter season is when we love to make our way to a snowy resort and ski our faces off! I don’t want to get to the point where I am not fit enough or well enough to ski. So It may seem odd that we choose to have holidays too but when they have been planned for months and we have scrimped and saved to ensure we can still live a normalish life then I think we should without fear or guilt or worry that we are making a grave decision.
All I want is to be normal. But that ain’t never gonna happen! Haha! But on a serious note… I think it is really important to try to try to have a life without canSer if possible. Right now I can, I think.
Haha… I can, I think.. That’s me all over. I make a decision, sort of!
Last night I slept like a log. Today I feel much better and brighter and more positive. I am less emotional but still really want my body to get stronger and healthier. My blood test showed that my red blood cell count had increased slightly which I was pleased about. I will keep combating the mild anaemia but I have to admit green veggies are evading me and I am drawn to comfort foods. (Don’t worry Pete is still feeding me liver!)
You know it’s funny. When lying in bed awake the other night I wrote the blog in my head and I have totally forgotten everything I wanted to say. I am sorry I cannot share that with you but it’s probably best it wasn’t aired. I am sure that time of night my thoughts are not really making much sense!
For now I am cooking roasting peppers that were home grown for us by our friend and I getting geared up to start wrapping Christmas presents. I have no idea what is still left to do but I am loving the build up to Christmas day.