"I'm still here!"

I can't quite believe it's been over a year since my last blog!! I've written so many posts in my head but never quite got round to putting them down!!

It's been a tough year for many reasons but the words of the Sondheim song from the musical Follies "I'm Still here!" sums up how I'm feeling!
Here's an extract:
" Good times and bum times, I've seen them all
And, my dear, I'm still here
Plush velvet sometimes
Sometimes just pretzels and beer, but I'm here!"

Since my relapse of my secondaries in the lining of my right lung and chestwall in May 2014 I've now been on constant chemo for 18months which although I'm incredibly grateful for as its keeping me here I admit to finding it rather tedious now and am so looking forward to what feels like a well-deserved and earned chemo break over Christmas to give my mind and body a little breathing space before probably recommencing in the new year.

At the time of my last blog entry I had started on the oral(tablet form)chemo drug,Capecitabine which a lot of friends with breast secondaries have been on,some for several years. It did the trick in lowering my tumour marker bloodtests for 6 months but in April of this year,I started to feel breathless again and tightening in my chest and a PET scan showed progression, if only slight,on my chest wall, so in May I started on the oral drug I'm still on now,Vinorelbine, one of the older but quite reliable chemo drugs. It took a while to have an effect but after about 3 cycles it started to lower my markers and although it's been a bit up and down each cycle the fact that the markers aren't going up or down dramatically means it's working! I start cycle 10 (3week cycles)later this week and I have to have a bloodtest prior to day 1 and day 8 of the cycle and take 3 liquid capsules on day 1 and day 8 and then have day 15 off. I'm so lucky that with my BUPA policy I'm able to have the bloodtests from home which cuts out a 40 mile round trip to the hospital 2weeks out of every 3. I go to see my wonderful oncologist(I've now been seeing him for 12 years!!)roughly every 3 weeks and will see him this week. it's likely I'll have a scan early in the New Year and bloodtests to see how the markers are doing and see if there's any change since my last scan in July.

I'm fairly lucky as side effects go and haven't had any hairloss with the last 3 chemo regimes but lots of other tedious things which mean a lot of time spent between my bedroom and the bathroom on certain days - I won't go into more detail than that!! My wonderful dog Bass is so patient and even waits with me in the bathroom but he doesn't stay around if there's vomiting!!!

It's been a year of a lot of sadness for friends both with and without cancer,the sadness of life with bereavements,relationship troubles,job problems and we seem to have had an overwhelming number of losses on the online support groups I belong to. I went to 3 funerals within 3 months in the summer and they were the ones I could get to. There were many more. A sub-group of the main private support group I belong to has sprung up consisting of about 20 ladies in the South Wales area so we not only communicate most days online but we now meet regularly and it's a wonderful source of support and shared sufferings and positive news too. Several of us attended the funeral of a lovely lady of our group who sadly died in July. It was a very moving and uplifting and emotional service that she herself had planned fully.I met there one of our group for the first time,lovely K,just 36,diagnosed with primary and secondaries in pregnancy just 2 years ago and mother to A,now almost 2 and B of 6.K hadn't met the lady whose funeral was,but so close is on online bond that she very much wanted to be at the funeral,despite now having secondaries in her brain and with failing sight.We chatted about what we would want at our funerals and we both liked ideas from the one we were at. This may sound morose but when the disease takes so much control away,it feels positive to try and control and plan what you would want yourself and to help your loved ones. Sadly we were all at K's funeral just 6 weeks later.Actually it was a Celebration of Life - they kept the actual funeral to close family. It was a very touching ceremony in a hotel overlooking the sea where I know K said she spent a lot of time with the children. Children of all ages from babes in arms were there and it was made into a very positive uplifting occasion but heartbreakingly sad to see K's beautiful 6yr old dressed up in a suit and her 21month old in her father's arms obviously not fully grasping what was going on. K has a surviving identical twin and close parents so I'm sure her young husband will get lots of love and support but it just seems so wrong that they have to go through such a loss!

Another friend I met last year in London and a regular poster on our national online group sadly also died in September at 37 leaving a young widower and a 4 yr old daughter whom she was devoted too. C was very feisty and fell out with several healthcare professionals and fought like mad to get the best care possible and to be around as long as she could for her daughter. The silence on our site when these ladies die is palpable. We have a tradition of lighting a candle on a Friday or Saturday when we lose a member.

Several of our members,galvanised into action by one member in particular,have been working hard over the last 2 years to start a charity specifally commited to raising awareness,support and to help fund research into Secondary Breast cancer alone and to be the 1st charity of its kind. There is so little awareness and sadly funded research into curing secondaries alone and you can't actually die of primary breast cancer.

The founder of this brandnew charity,J,despite being very poorly herself was able to see the website signed off but died just 3 days before the public launch but we are all so proud of her and the others' achievements and hope it does get support and will continue to run.All the people running it are not taking any fees themselves and all donations will go directly into the charity. The site is http://www.secondhope.co.uk/

We have 2 professional artist/illustrators as our members,both with secondary breast cancer,who have designed and had beautiful Christmas cards made and are selling them on Ebay,all monies going directly to Second Hope. The link is here http://www.ebay.co.uk/itm/Second-Hope-Christmas-cards-/252180720635?hash=item3ab7246bfb:g:DXkAAOSw5ZBWKgkD

I will leave you now with a very touching post from the 7 yr old daughter of another of our members who also died in the summer. Her mother Rosie,wrote a very inspiring and honest blog of her journey with breast cancer which her widower has continued and yesterday her daughter published her first entry.

I just live in hope that the next generation can see a cure so that more families don't have to lose such valued members prematurely,

The full blog is at www.fightinggenghis.wordpress.com but here is young Natalie's post:

Natalie’s first blog

Posted on November 22, 2015

My name is Natalie Choueka. I am a daughter of a mother that died of breast cancer five months ago, a sister, a niece and a grandchild.
Everything is changing in my life, new school (junior school) and everyone in my family are especially sad. I love the world but life is just not the
same without two parents to take care of me and my brother.

In my point of view Dad would do anything for my mum, absolutely anything. I would do anything aswell, I would throw away my favourite top if she told me to. I love her to bits and I still do. Forever! I have watched a video of me coming out of the hospital, when I was a tiny baby and when we got home my mum took me to the room that is now my brother’s bedroom.

I have also watched a video of me when I was a little bit older than just a baby.  I didn’t see her but I think that my mum was in the video, well I definitely heard her and I think I saw her hand in the video aswell! I wish I could have said one last goodbye to my mum and say that I love her to the stars and back, the way we always did to one another. She would have said she loved me even more like 1 million thousand time more.Well that at least what I think  she would have said . We all miss her so, so, so much  forever and ever!

Natalie