visiting friends

Sunday I was collected from the airport like royalty by Clara and Alvarito. To be transported back to view 'my' new bed, purchased especially for the occasion! Yesterday I had a lovely lunch of bacalhau and planalto with Bella and Lisa. It poured with rain, but that didn't spoil it at all. A nice start to the week.

Today the weather is a bit better. I am having a really relaxed time in Portugal. Just doing whatever I feel like. Whenever I feel like it. Trying to see all my friends at least once before I leave. This morning I walked the 20 minutes down to the same Espinho that I have been staying in every few weeks for the last 10 years. And it was a completely different experience. One of the most startling things being that half the beach has been washed away by the winter seas!

Today consisted of; a fast run up and down the veranda with my new friend Luna. She is like a terrier, so has kill her toys by breaking their necks and shaking them. Then a brisk and freezing march down to the seafront via a lot of small lanes and including a lot of window shopping; I saw lots of things I'd never noticed before. The wind was horrendous, but even that was quite refreshing. I believe I rather resembled Batwoman, as I had on my long black leather coat, which streamed behind me in the gale.

A leisurely 3 hour lunch at the beach, sitting in the sun reading my book and listening to three estate agents discussing the pro's and con's of purchasing property to let in the Porto area vs property to let in the Algarve. Seems Porto wins hands down. Depending on how many glasses of wine one has had with lunch. Watching the reconstruction of the breakwater with what looks like giant cement chicken feet. This also involves a lot of conversation by groups of ['non' hard hat clad] men standing barely a foot from where the crane was dropping the cement things. Only in Portugal…

A quick visit to the Cabelereiros to make an appointment for tomorrow, then the walk back again. This time rather more hurriedly, as the clouds were gathering and I didn't fancy a good soaking. On the way I saw a magnificent lemon tree. The lemons were so big and so yellow I thought they might be fake. And when I realised they weren't I wished for my camera. And that I could pick one. And a small dead bird - with very sparkly feathers...he actually did turn out to be a fake. Some Easter decoration, dropped at the side of the road.

The weather is being unpredictable. Sunny one minute, pouring the next. But it's warm, and maybe the weather will improve. And I still have the evening and the rest of the week to look forward to!  This was this mornings bleak outlook.

This afternoon has turned out lovely, apart from the wind, and how can I resist this face - looks like more death and destruction of toys on the veranda!

grr

Last week was great – I really started to feel back  to 'normal'. Thanks Ricardo for the work and Andreas for the encouragement! I know. It's taken a long time – longer than I thought it would. And, to my mind, longer than it should have. But the mind is a funny thing. It does what it wants, and the body just follows.

Anyway, today was a lovely day [until we met the Beastly Clampers].

I got tons done this morning, seemed to be in manic mode [which used to be a norm for me] then zoomed off to collect our friend Mikaric from the bus station. Eek – chaos – they have closed off the old parking area, where one could drop the car for free, collect the person from the bus, and zoom off. Now, there are gates across the entrance [which I almost smashed into, having turned left around a bus in order to encounter them!].  Exeter city council are totally anally retentive. Everywhere to collect a person is blocked.

So – finally managed to collect the Mikaric after running up and down the lot, with the car parked illegally, flashers on. Home, lunch, blah. Then we decided to go out and buy an Easter egg for the Grand daughter. Mikaric lives not far from her so would be able to deliver it. Whey hey – good plan. Er – not, at the end of the day.

We had a great time shopping for eggs…could have eaten the lot! Then went to the cash point, as I have needed to verify my pin for an age, and decided today was a good plan to do it. Ha! Not! The parking lot usually available to customers of Barclays was blocked. The lot next door [a completely crap lot, full of holes] was not. So I dropped the car there, with Mikaric in it.

I only stopped in the Polestar lot as there were three other cars parked there, obviously all going to the cash point, as there were three peeps queued there. Stopped, left a friend in the car [and the keys in the lock in case he needed to move it]. I was literally 2 minutes, as I was simply checking my credit card pin. Probably this could be ascertained from the cctv they have on the cash point.

Arrived back at the car to a clamp. And suddenly no other cars in the lot [odd]. The clamp chaps tried to clamp the other cars but had to let them go, as they had drivers at the wheel [my passenger ascertained this, after getting over the shock of being clamped in my 2 minute absence]. Seems that was to do with ‘health and safety’ as in, if you clamp a moving car it could be dangerous to the clampee  ;o) They did not give my passenger the opportunity to move the car. They simply jumped out of their van and whacked the clamp on. Suffice to  say, the friend in the car was too gobsmacked to do anything except gawp. Imbecile...eheheh

To be fair, the chap was very kind to me, as in he said I could go back to the cash point to draw the £100.00 in order to pay him!! Incredible - they clamped me for going to the cash point in the bloody first place! I refused on the grounds of no money in my bank. Had to pay with a credit card, the first of which was refused [the one I was verifying at the cash point - hence void receipt], so I had to use another and paid £103.00. I assume the extra £3.00 is because I paid with a credit card. FFFFFFttt!!

Suffice to say, I paid it under duress, as otherwise they would have towed the car, and obviously I need the damn thing as I am looking for work. Grr. This was not right. £50.00 I could stomach – but £100.00 for a 2 minute stop?? FFS!! Not normal.

That was my day. Infuriating to say the least.

such a week!

Monday I was a bit frantic as usual, as the 3 month check up was looming on Tuesday. Even though I've recently had the laparoscopy and biopsy and been told there was no evidence of cancer [by the beenied surgeon!], I was still worried and tense. With cancer you just never know – it seems could sneak back in an instant…or it could remain dead and nuked for good [this, of course , is the ideal scenario]. It doesn't seem to matter what one's been told or when – the worry is still there. But happily, my CA 125 was back down to 7. SEVEN!! Who hoo – that was nice to hear!

It's always such a relief.

Tuesday night was the Secret Guide to Women's Health, which also worried me a bit – I mean I'm not exactly TV material, and we didn't see the final cut before it aired, so you never know what you're going to look or sound like. Thankfully, it seemed ok to me. The FH was fab – made me cry to watch him – it brought it all back. The long nights where I was awake in fear of my life, the days where the FH would make every effort to take me somewhere that would cheer me up – the horrible chemo…being bald and frightened. Being on Planet Cancer.

A lot of it was cut, but Hani came over with loads of info, so it worked. Well, it must have, as so many women have been in touch with me since the program. I am amazed – before I had cancer, I wouldn't have been interested in it. At all. I don't think that's unusual  – after all, it's a pretty horrible subject right? None of us wants to think about dying. Particularly dying a horrible painful cancery death.

But these women are interested because they want to know how to protect their lives. And that's the whole point – to make women aware. Ovarian cancer is the fifth most common cancer in females in the UK and the second most common gynaecological cancer after uterus. You'd never know it would you?

In the UK it affects over 6,800 women a year, and we have the highest death rate in Europe. The incidence of ovarian cancer is highest in USA and Northern Europe and lowest in Africa and Asia. Ugh – not good. I should have stayed in Africa! So being aware of the symptoms is vital – early detection saves a lot of lives.

So, here are some pics from the film set!

From left to right; Dr Rosemary, Coleen Nolan, me and Professor Hani Gabra.

Apart from that, I have been doing a million things – still trying [how frustrating is the internet sometimes??] to upload Hacker Design stuff and Ecobeds to various web sites.

This morning I had an interview just to 'see' my portfolio. We will see if anything comes of that. Doing logo work for Ecobeds and Hacker…excel sheets of prices, packing and weights blah blah. Address data base, email database...and of course stuff for the Riviera Tile & Bathrooms bunch! Posters and web site and then need to get cracking on killerpaint web site too…uff

Yay – busy!!

Tracey's in the paper!

Here's my friend Tracey in the paper in Hull. Way to go Trace! And the photos are smashing :o)

the secret guide to women's health this evening…

the Secret Guide to Women's Health is on at 10.00 on Sky Real Lives, channel 243  on Sky and OR 281 on Virgin [cable].

Trailer is here! Yay – spreading awareness.

woo hoo – on the tv tomorrow…

Saturday I watched the video clip from the SKY Real Lives programme, burst out crying and went into 'bad temper' mode. Why? Who knows! My check up is tomorrow too – that certainly doesn't help with equilibrium.

I'd never seen it. I was supposed to watch it as my 'back story' when we did the filming in London. But I couldn't, as it has the FH doing 'my wife is amazing' stuff in it. Messes my head up totally. He is so amazing.

Anyway, we are not sure if we will be able too watch it, as we can't work out which channel it will be on [if any] on Virgin cable. We think it's on 282? We will see tomorrow!

I can't embed the video, as their code doesn't seem to work, but you can see a clip here.

---------------------------------------------------------------------------------

Sky Real Lives 2: Tue 23 Mar, 10:30AM

Sandhy Robinson Jones talks candidly about her experiences of dealing with Ovarian Cancer. See more from her on The Secret Guide to Women's Health.

Unexpectedly diagnosed with cancer in January 2008 Sandhy Robinson-Jones has been treatment free for a year. She is living with the constant threat that her cancer will return.  Sandhy wants to raise awareness of ovarian cancer which is frequently misdiagnosed because of its ambiguous symptoms.
Sandhy Robinson Jones, 47

In December 2007, having felt tired for seven months Sandhy went to her GP having noticed her usually flat stomach was swollen and a tiny bump in her groin. She was quickly referred for a scan and was told there was a growth on her ovary that looked like it could be malignant. Sandhy was shocked - it had not occurred to her that she may have cancer. Sandhy had a full hysterectomy and oopherectomy (to remove her ovaries, uterus, fallopian tubes and omentum) and her bowel was scraped where the cancer had spread. She then had a six month course of chemotherapy.
The hardest part for Sandhy was losing her hair through her chemotherapy treatment. Nobody had warned her that not only would she lose the hair on her head but the rest of her body hair too. She was also unaware that she would put on weight because of the steroids she was taking. Sandhy has the unwavering support of her husband and two stepdaughters.
Sandhy now devotes a lot of her time to raising awareness and providing support for women with ovarian cancer. She is doing the Relay for Life this year to raise funds and has set up a mutual support group for ovarian cancer sufferers on Facebook. Sandhy is committed to helping women recognise the symptoms of ovarian cancer so they can get help quickly. She does not want anyone to have to go through what she has.

Sandhy Features in Episode 6 of The Secret Guide To Women's Health which looks at Cancer.

Find TV listings and set your Sky+ to remote record

About Ovarian Cancer

Ovarian cancer is the second most common kind of gynaecological cancer with nearly 7,000 women diagnosed in the UK each year, around three times the number of cases of cervical cancer and only 30% of those women will survive for more than 5 years after.
Currently the risk of developing ovarian cancer stands at approximately 1 in 48 for women in England and Wales. Ovarian cancer is often referred to as the ’silent killer’ as it is difficult to detect and treat.

Resources:

www.ovacome.org.uk

www.ovarian.org.uk

Guest Post – a friend who is making a difference

I have been doing a course. Macmillan Cancer Support, in partnership with Stanford University School of Medicine in the United States, are conducting a study testing a new online course for people who have survived cancer. I've been doing that. [the course, and the surviving cancer thing]

This is written by a person from that course. A man who is really making a difference. Steve. Please read the following – it's to do with skin cancer. Something I am totally unfamiliar with, but  should know about, having spent the majority of my life in hot and sunny climes…baking my bod in the rays! Thanks Steve, for your input in this post. All cancers suck – and we are better for knowing the symptoms BEFORE they get too carried away with themselves…bastard things cancers…here's Steve:

"Cancer always happens to someone else. I had been retired for just
over two years when suddenly it wasn't someone else, it was ME. We were on holiday in Ireland at the time and my wife noticed that a mole on my back was started to change shape. Once my attention was drawn to it, I noticed that it felt funny. When we got back home I went to see my GP and he referred me to a Dermatologist at my local hospital.

I had an appointment within hours and went in a few days later. He had a quick look, checked the rest of my body and before I knew what was happening I was lying on my stomach with unseen hands removing bits of me.

Three weeks later, back at the Dermatologist, sitting instead of lying down, I was told I had Malignant Melanoma, the most deadly sort of skin cancer. It's a shock, but I was introduced there and then to Gwen, a Cancer Nurse Specialist, who told me how things would happen from then onwards and answered the questions I could think of at the time. Ten days later I was back in hospital to have a wide local excision. This involves going back to the site where the first bit had been removed, (healing nicely now thank you), and taking a wider bit out to make sure that all traces of the cancer have been removed together with a wide section of perfectly good back. Ouch. So far so good. I went off to lick my wounds, (that's an expression, I can't even see that part of my back, never mind lick it).

Two months later I received the good-news letter telling me that the section removed had a good clear margin so it was likely that all the cancer had been removed. This was just about the time I first felt a lump under my armpit. Going back to Gwen, one of the first things she showed me was how to check my moles and how to see if there were any changes in my Lymph glands "which apparently act as magnets for any nomadic cancer cells". (The medics call it metastasising but I think of it as nomadic wandering.) Lumps are bad, especially in the armpits, because that's where lymph glands hang out. It was back to the hospital, fast track thanks to Gwen, and on the table again.

This time to have an maxillary block dissection. Now I don't know how many people get through life without knowing that they have Lymph glands, but I was one of them. And now, someone wanted to take them out. I knew so little that I thought it was like my other trip to the hospital, use the long stay parking but don't bother taking a book. Ten days later they discharged me, after first removing the drainage pipe sewn into my chest and the attached bottle that had been my constant companion. Unfortunately the fluids which had learnt to go into the bottle and then into some hospital disposal system now roamed freely around my chest. On one day I was a 44 inch A cup, the next a C cup and after three days triple D, or whatever comes next. So, twice a week I was back in hospital to have needles inserted and up to a litre of me extracted. Eventually it all got better, I was referred to a Physiotherapist and to the Lymphoedema Clinic and now I'm back to the same sorry state I was in before all this happened.

A year down the line and lots of thoughts become much clearer. Firstly, you have to take responsibility for your own illness, the
medics can help but its your problem, you deal with it.

Ask questions, ask questions, ask questions.

And make sure you get answers. If you don't like the answers ask someone else. Learn about your body and your cancer. My treatment by the hospital and everyone concerned has been superb. Everything has been done quickly and the people have been wonderful. BUT, (there's always a but), none of them have had cancer, they know what they know from books and experience of watching patients. They don't know how I felt, and I felt differently to the patient before me and the one who came afterwards. I wished that I had been able to talk to other patients who knew what I was feeling.

But there was no-one, no support group for skin cancer. Not in my local area, not in my county, not, as far as I can tell, in the UK. So I thought, what the hell, lets start one. Gwen is brilliant and supportive, the surgeons are with us, the hospital communications department are backing us, local newspapers have given us column/inches, local radio has given us air time. So the end of this phase of my cancer ends.

I am well, have new friends and I have a mission “to make things
better for patients who come afterwards". And I'll tell you, NOTHING
will stop us. So there Mr Cancer. You lost, I won."

Please contact Steve here: 01782 658889 or attend the meeting at the Hope Centre, Garth Street, Hanley, on Monday at 6.30pm.

time management – or not…

Eish, I can't believe this…well, I can, but I have to at least pretend to be startled by my own lack of comms with the general populace! I keep forgetting to reply to emails, do the ironing [oh happy lapse!] and everything else. My office is like a junk yard – NOT nice. It means my brain is probably also in chaos.

I am now madly trying to get lots of products onto lots of web sites. I suppose I could say I 'don't have time' to answer emails / the phone / the door, but probably I would if I were a bit better organised. I keep replying to things, saving them as drafts and then completely forgetting to complete and send the blessed things. As for the phone, I just slam it down if I don't know the person calling. And I threatened a cold caller at my door the other day with Certain Death if he didn't get his ass off my property. I am a grouch. But he didn't appear to understand "I'm not interested". But it became very clear to him VERY quickly…

I am now officially the Marketing peep for Hacker Design and Feelgood Ecobeds. Shriek! I have never done anything like it in my life, and as I am working on a commission plus expenses [and I am a bit of a cheap tart so that's not much] I need to get my butt in gear. Right. Ok.

On another subject entirely, my brother Pete [who is quite organised], and my sister-in-law Tracey [who is as dotty as they come – rather like me], are running the BUPA 10k in London on 31st May 2010. If you can spare a fiver [or a couple of bucks my darling US friends!] please donate. Pete has run a zillion marathons recently – he is like a one man money machine for charities! Way to go peeps.

Here's Pete with me – wearing the beastly wig during chemo. I love this photo, even though I look like a mad woman. Pete had more hair than me then ;o)

Please donate if you can. They are not 'sports' people – they are just trying hard to help others. Thanks!

Sunday safari – Alf Fresco's and beyond…

this morning was interesting! I was leaping about the house at 6.00 waving coffee and cigarettes, slapping on make-up and clothes, getting ready to zoom down to  Dartmouth to see Simon off on his first leg. The FH of course, was sedately doing his thing.

I carefully packed the camera, lenses and spare battery; the sunglasses and other sundry stuff necessary for The Safari to Dartmouth. Off we went. I was remarkably cheery considering the anti social hour. Well, in my opinion anyway!

We collected Julie, and off we shot. Claire and her small army were on the way, so were Amanda and her crew. We made it to Alf Resco's a minute before 8.00, and bumped into Claire & Co. in the street. The little ferry trip was excellent fun!! Loved it – the light was amazing this morning.

Here's a map of the lighthouses.

Alf Fresco's was chocker block with cyclists and some other ordinary peeps – all slurping coffee and munching brekkie – they do a fab breakfast there, open at 7.00 every day. And it was SUNNY!!

So, we decided to take photos...oops, I did that insane thing of not remembering the memory stick! It was in the pc at home…bah. But hey ho, we used the iPhone. As you will notice, the photos totally suck, but better than none! A really good send off for Simon by Alf Fresco's and the rest of the supporters. Then WE had breakfast! Sausage and egg sarnies…orgasmic!

Now just for the Girls to meet him around the country!

Nick Baker and Simon Curtis

the trailer

the Supporters! :o)

and…Simon and Murphy…

 

a fab day at the hairdressers! Ragamuffins Rocks!

what a GREAT day I had on Thursday!! I started off @ 7.30 doing a translation/animation for one of my Portuguese friends – she sent me a PowerPoint that I just couldn't resist editing. That was fun, as I didn't HAVE to do it.  Then I raced over to the Farm, and spent an hour and a half editing an excel document at Hacker Design [freezing my ass + fingers off in the process I might add!]; adding dimensions and weights for packing and postage. Getting on internet shops sites is complicated…Then zoomed back home to receive my grocery shopping [for some reason Tesco decided I needed cream and chive dip??]. Then had a speedy bath [for sanity and defrosting] – then drove over to Kenton, to my hairdressers appointment at 3.15.

Nikki, the owner and hairdresser to the stars [that would be me] is a delight – she chatters away about all the stuff she's doing to your hair as if any of us mere mortals would understand it…and I will understand it once I have researched the site. She coloured, cut and dried my hair – for free?!  It came about because my friend Julie called Ragamuffins Hair Design to enquire about their product [more about that later] and somehow [not sure how] she wangled me a free hair session. I am impressed. Julie, you're a darling. In fact, when I left Ragamuffins, I was in tears – what a kind thing to do. Just when I needed it most along came my Fairy God-hairdresser Nikki! :o) Nikki did it as it's Ovarian Cancer Awareness month, and to use me as an example to her staff.

Here's the hair!

Anyway, Nikki is quite into the Trevor Sorbie philosophy. "Finding a cure for cancer and alopecia is a medical task, but supporting the well being of those people suffering the effects demands much more than a Doctor can provide." This is so true, and when I needed a hairdresser just after my hair started growing back [not to mention when I needed it chopped off], I looked for a Trevor Sorbie place in Devon, and there wasn't one – still isn't, but there will be soon. Yay. She WILL be a Trevor Sorbie salon, and I will post here when she is. Although saying that, I think her personality and empathy already make her the perfect hairdresser for women [or men] who are going through hair loss from chemo, and the resultant chaos of the re-growth. Because she has researched it already.

In the meantime, Nikki made my day. My week – I am now the proud owner of really great looking hair – I would seriously recommend this  hairdressers' to anyone post chemo and also anyone at all. The atmosphere is relaxing, the staff are charming – and they are aware that hair is NOT just about styles - it's also a part of your personality and confidence.

Plus, all the product at Ragamuffins is gentle and nourishing, and has natural ingredients, whilst minimising the necessity for harsh or damaging chemical additives. Chemicals are really BAD after chemo – your poor old head is so sensitive that you have to be very careful of what hair colour you use. And my hair feels a billion times better than it's felt for ages!

Thanks so much girls…

change…

This is from Ben McLean's web site.

I cut off all my fingernails today. They got so long that they were irritating – plus I tore one off at the quick yesterday lifting a bench whilst balancing a lamp…as you do. Ow. So. Chop with the nail clippers. Spang! [as they fly around the bathroom]. Goodbye. They grow so quickly I shan't miss them for long. Change.

It never ceases to amaze me – how fast things happen, how quickly they change. On TV in the UK there is a retirement advert [some insurance company  or other, grr – you KNOW how I love insurance companies right??]. Last year whenever I saw the ad, I would be on the verge of tears. Or, more often, in tears; thinking that all our plans for retirement, vague as they may be, would never ever happen. I envisaged my own death often. Er – like every day…and I felt too young to die. I FEEL too young to die!

Since the biopsy in February, I have felt differently. Instead of living each and every day [and night] in fear of my life, a feeling that many of you will recognise, I feel as if I MAY have got on top of this mind fuck that is cancer. I am not saying that this is a permanent thing [although it will be good if it is], but for the moment, I feel 'quietly' confident [tap tap on the wooden windowsill]. I listened to Gail on the BBC Radio programme we did – her point about ovarian cancer being a chronic, but nonetheless 'treatable' disease – well, it made me think.

Firstly; how lucky I am – I may have no job and thus no money. I may be scarred and have odd twinges every now and then. I may worry overmuch. BUT, I am alive. And I am SO grateful for that.

I hope it doesn't recur. I really do. But IF it does, every day there are new advances in treatment. New drugs, new insights, new methods.  New hope. There are people out there like Simon and Ben raising funds for research which enable this – we are so lucky to have them. They do the things that we can't. Cycle round all the lighthouses of Britain? RUN all across the Sahara? Run?? Well, I couldn't do either even before I had cancer!! These men are a little crazy – but they must have really BIG hearts to do this for us…and they should  know how grateful we are. They should know that what they are doing, the torture they will go through – well, the funds they raise will save lives. What better? And what they should also know is that we will be there, watching over them every step of the way.

Thanks boys!! ;o)

a wonderful story of hope

I remember meeting my friend Emily on the internet – I think we met through her blog. I had been looking for something positive, as averse to dry clinical articles that told me I'd be dead within 5 years.

Em's blog was a far cry from that and I loved her determination. It was exactly what I needed, having been recently diagnosed.I read it all, cried through the twins, laughed at some of the other remarks and happenings, and decided to make my first 'blog comment'. Braving the new world [for me] of blogging was quite extraordinary.

Then we got in touch on Facebook, where it's a lot easier to 'chat' and that was that – we sent a million messages back and forth, as Em was ill when we got in touch, and I was in chemo. Lots of sleepless nights made for long messages :o)

She was such a support, and such a mine of information. And the story below is like a miracle. It should give hope to all women who are going through or have been through ovarian cancer – there's never a day when you shouldn't feel that things can get better. No-one is a statistic.

Way to go Em!!

From RED magazine.

what a week!!

this week I have been wondering if I AM actually unemployed or not?! I am so busy doing 'stuff' I don't know whether I am coming or going. Between trying to tweet this, Facebook that, design things for the FH's shop, for Simon's bike trailer, oil, wax and photograph furniture for Hacker Design…

here's some of our super furniture…the clothes ladder!

hmm…seems I am working right? And I am enjoying it all immensely, bugger there's no pay involved ;o)

And in the middle of all that, BBC Radio Devon rang me yesterday, giving 20 minutes notice of wanting a chat on 'Fitz's Interactive Lunch' about Ovarian Cancer! Aaargh – quickly rang Julie, and thankfully she was on too, so we had a good shriek and then waited for the show.

You can listen to the show here for the next 6 days I think. I just managed to find it and listen to it myself – nothing worse than hearing yourself on the radio! I [as I knew I would] sounded like a frenzied maniac…but that's probably because I am one ;o) I was very nervous. Good fun though, and all for bringing awareness to women, who [like I was] are totally ignorant of ovarian cancer signs and symptoms.

So funny, as first Julie was on, then an email arrived from our Tracey, then I was on, then Claire got them to give a shout for Georgie…we all but took over the program! Cheered us all up for the day.

Next thing is Simon's send off from Dartmouth on mother's day, then the 23rd March SKY TV thing [here]. Gosh – it's all go!!

ovacome: awareness month in the UK

 

See ovacome's new launch here! More later – I really must do some gardening before it starts raining…