ow!!

Right – booked the bloods while I was malingering at the surgery – and had the flu jab, and I also have to have a 'swine flu jab' – eek! Haven't booked that yet, but no doubt I will. I really feel like a hypochondriac!

I was a tad fraught at the thought, as I understood that these jabs actually inject a bit of the flu virus into you. But apparently that's not so, its an antiviral. Whatever it is, my arm feels like it has been battered with a baseball bat!

I arrived at the surgery 10 minutes before my appointment, expecting it to be late. Ha! the surgery was like a party! Loads of people over 60 all rushing about chatting to one another, a table for the 'Alphington Friends' to sell tea and [OMG] Christmas puds…uff. I think I was the only person under 50 there. I certainly got some odd looks.

Anyway, I was in and out in 2 minutes, stab, blah, bye. Now I just have a sore arm, neck and back – it's a bit like a cholera and typhoid…hurts a lot, gives you a bad arm, but goes away quite quickly. I hope! Every other time I've had a flu jab I've had this, and nothing else, so lets hope it's the same this time!

off to the GP

well today was great! I toddled off to the GP at 6.00, Aj made me an appointment whilst I was in Portugal, as whilst I was there I had that massive panic attack, crying down the phone to my oncologists secretary. So off I went.

I really love my GP. Being that I am convinced that he saved my life with his speedy typing/phoning thing when I was in crisis last year, well, why wouldn't I?

He's a tad eccentric. Which I like. I am not exactly your average cancer patient, so we make  a good pair. He asks me how I am in a way that really means 'how are you'. He explains everything to me, no matter what I ask, right down to the minutiae. He's a boffin type dude. Love it. No fancy name though [no Le Pew here!] – just Dr Bradley. And he has sort of crazy hair. This helps me trust him. I have crazy hair to.

He has decided I need a flu jab. And a swine flu jab. Hmm. Oh well – can't be worse than the blood draws which I hate, so I am booked in.

Free House Cleaning for Women in Cancer Treatment

A clean home goes a long way towards transforming our spaces. For people experiencing cancer treatment, cleaning house can simply be too difficult, at a time when a healing environment is critically important. Thankfully there's a non-profit called Cleaning for a Reason...

Cleaning for a Reason is profiled in the current issue of the Angie's List magazine. Women who are currently in treatment for cancer are eligible for up to 4 free house cleaning sessions from a local cleaner. There are over 300 house cleaning businesses across the country that have enlisted to provide this service. For more information about how to qualify for this service, check out the Cleaning for a Reason website here.

And they are always looking to add more cleaning businesses to their ranks so if you hire a cleaning service, let them know about Cleaning for a Reason!

Image: Flickr member The Shopping Sherpa licensed under Creative Commons

check up time again…

why are we so nervous nearing the check up? we/I should be jumping for joy. It's just a confirmation that we are well. Right? No. It's a test to see if the cancer has come back.

The last few weeks I have been worrying a lot. When I initially asked Dr Hong HOW I would know if I had a recurrence, she said that I would probably have the same symptoms as I had in the first place. And that it would probably recur on my stomach IF it were to recur. Oh joy. They were hardly 'in your face' symptoms were they? A swollen tummy, a lump in my groin, extreme tiredness. Well, I have the extreme tiredness again, that's for sure. And it worries me. Plus, apart from being exhausted, I have a lot of strange pains in my stomach – these are apparently 'normal'. After massive surgery like I had, you get pains. Adhesions etc.

Whilst in Portugal I rang the oncologists secretary in tears – she said better to wait until your appointment. So, I will.

But normal?? What is that?? Tomorrow I have to phone and book myself in for my bloods. I should have done it today. But as usual, I leave the important things to last.

To my detriment.

this is so true…

smiling hurts!

this is amazing! It made my face ache from smiling, it's such a happy video – everyone should have a wedding like this!

fantastic! see the whole story here!

travelling and new friends

well. then we went to Stoke. Aaargh – what a nightmare. The trip is, on average, 3 hours, 3 and a 1/2 tops. We took nearly FIVE [yes, 5] hours to get there. Never saw so many crashes on one road! The M5 is jinxed right now. Avoid! The first was a 5 car pile up. Then a three car crash, then road works, then another crash, more road works…it was quite literally, TORTURE!! I think I was in first gear for three hours – eventually had to swap with Aj, as my knees were locking up. Uff.

Eventually we arrived, exhausted, to have a birthday dinner with the girls – Chinese take away! yesss. And chocolate cake [with candles] for Vicky and Aj [Vicky's birthday is the same week as her Dad's].

Aj and his girls:

Then on Saturday we went to put flowers on Aj's mothers grave. I don't mind visiting Clarice, but I always hate this. Confusing. I don't like the cemetery, I don't like what seeing all those graves does to my head. And I don't like walking across the graves either! I always come away from there thinking horrible things and feeling upset. Feeling as if I better sort out where and how I want to be buried / cremated whatever. Not my fave type of thoughts.

Whatever. In the afternoon Aj went to see his beloved football team play against West Ham. While he did that I went to visit a woman recently diagnosed with ovarian cancer. We got in touch through Ovacome. She was diagnosed in September, and had her first chemo last Monday. As I was going to be in the area, we thought it might be nice if we met. Maybe I could give her a bit of support and encouragement. I know that I really appreciated it when I met the girls I now know as friends after I was diagnosed. So, off I went.

I was so nervous. I worried about telling her too much, too little, or something that might really upset her. I tried to bring her some things that might help. I am not a qualified 'let me help you with cancer' person – or am I? We who have had cancer, we know it well. Maybe I am. And it was great! We talked and talked, so much that I forgot the time. Eventually she dropped me back – but I think we could have waffled on for another day. A very strong woman with the right attitude.

But it brought it all back, the scary bits, the things I have compartmentalised. The things I have 'forgotten' [not quite]. But that was good, as I am now in a position to realise how very lucky I am. In a year I am hoping that she will be where I am – a survivor and also a person who is able to 'put away' the worst bits. But first she has to get through those 'worst bits'. It's heartbreaking. But I did it, so anyone can.

It's nice to forget some things. Sometimes chemo brain is a blessing!

the interesting birthday

well, what a busy old life! I am [to quote Nat] a BAD blogger! Which is good. I have been doing a zillion things which I will précis here or bore you all to death.

Firstly, I was working in Portugal – Portugal is a wonderful place to be, lovely people, fabulous beaches, great food, cities to die for, but…CRAP internet! So. No blogging. It just gives me a headache thinking about it. But being there was great, sunny weather [I was actually at the beach, bikini, book and all], lovely food and of course my friends. Oh and a bit of work thrown in [unfortunate that!]

Then home again – the usual midnight flurry of dropping the hire car, Aj collecting me from Exeter Airport, home, sleep blah. The day after I got home was Aj's birthday, plus the Tern TV second interview now that SKY have decided to use me for their Real Lives programme. Tern [Lorraine and Malcolm] arrived at lunch time, and we did a 2 hour interview in our freezing dining room. I shall be blue on the telly. I don't care. If even ONE woman is diagnosed early by seeing this, I shall be delighted.

Then Aj arrived and we went off for lunch at the Poachers. Lorraine did a separate interview with Aj – poor Malcolm had to ask Aj to stop talking, as he became so distressed he was in tears and couldn't film. He said he was imagining what he would do if it were HIS wife. That was sort of reassuring, as it's nice to think we are working with people who actually care a bit. Eventually Malcolm got his head together and carried on filming. In the meantime I ate half the whitebait  hors de oeuvres!

They treated us to lunch and left. We spent the rest of the day chilling out. An interesting birthday for Aj for sure.

The interview:

sign the LIVESTRONG Action petition

Insurance companies are a pet hate of mine ever since being so brutally treated by SAGA when I told them about my diagnosis – they were so rude/thoughtless/horrible that I was in tears for hours after I spoke to them. Shame it's not NOW, as I would have A: coped far better, and B: abused them right back!!

 

So, I shudder to think what it must be like to have to deal with that day in, day out in the States. The fact that people in America can be left die just because they don't have insurance? Incredible!! Everyone in the UK is always whining about the NHS [whine away, but NOT in my hearing thanks] – but at least we have the assurance that no-one, ever, no matter who they are or how much money they have, will be turned away from a hospital if they are ill.

 

I still find this completely mind boggling, and actually, barbaric. Sign the petition below, lets help people in the States not be murdered by paper pushing, greedy insurance companies? Quite a good idea I'd say.

 

Lance Armstrong was denied insurance when he needed it most. Sign the petition and tell Congress that no one else should be.

Today is LIVESTRONG Day. Thirteen years ago today, my doctor told me I had advanced testicular cancer. What most people don’t know is that at the time, I didn’t have health insurance. In the following weeks, I received letter after letter from the insurance company refusing to pay for my treatment. I was fighting for my life - but also for the coverage that I desperately needed.

The legislation currently being debated in Congress is not just words on a page - for many cancer survivors, it’s a matter of life and death. Now, as this debate enters crunch time, I need your help to ensure that what happened to me doesn't happen to any other American:

http://www.livestrongaction.org/campaigns/healthcare

No matter what side of the healthcare debate you're on, I believe we can all agree on two things:

No American should be denied health insurance coverage because of pre-existing conditions.

No American should lose their insurance due to changes in health or employment.

Will you sign the LIVESTRONG Action petition to make sure any legislation includes these two critically important reforms? We’ll deliver these to Capitol Hill this month as the debate reaches its climax and make sure our voices are heard in the debate:

http://www.livestrongaction.org/campaigns/healthcare

When I received my diagnosis, I was between cycling contracts. My new insurer used the diagnosis as a reason to deny coverage after the new contract was signed. Fortunately, one of my sponsors intervened. At their insistence, I was added to their insurance company and was able to continue my life-saving treatment. If my sponsor, a powerful company, had not gone to bat for me, I may not have made it.

LIVESTRONG post – cancer – it's effects on my life

I promised my friend POD I would do a special post for LIVESTRONG day. And this is it. To be fair, it's a post that has been brewing and evolving [that means writing and then deleting to avoid the risk of sounding self pitying and grating – oh, and to avoid abusing people that piss me off!], as I have been having a 'cancer brain' type of week. Very irritating, as I have been obsessing about dying of this stupid, repulsive and repugnant disease. Hmm. Stupid. And a waste of time. But, hey ho, one year out of chemo, it seems this is normal. OOOO – goody!! I am normal! woop woop. Not.

Imagine this. A person sitting with their face in their hands. Crying. Bent over the keyboard, just trying to see the 'x'. That is me. Trying to remember when I was diagnosed. Chemo brain does that to you. It can be really crushing. I suppose it was the 30th January really – sound scan, you have a malignant mass. Thanks.

Anyway, back to the post – it is supposed to be about how cancer has affected my life. Well. No brainer there. Get cancer, life changes radically. Values change. Friends change. Thoughts change. Long term plans change. The resentment is unbelievable - once you've had cancer YOURSELF, life is totally different. It almost seems like we ought to be able to just have a holiday.  Take a long break. But of course we can't. We [like everyone else] have to work. We have to pay bills. We have to deal with everyday ins and outs. But it's hard, as we feel like our lives are short, and WHY should we have to bother with these things??

In the meantime, back at the ranch, I have a lot of confusions. Actually, since I had cancer, my life seems filled with confusing things that were never there before – maybe because before I had cancer I didn't dwell on thoughts of death or how I might die? I certainly didn't envisage a long and painful, undignified death.  I AVOIDED that. And I think I was right to. Why dwell on things that haven't happened to you? No reason at all.

Reasons for cancer brain week; reading [I can't sing, so I just read the words] hymns reminded me of death quite a lot. Plus one woman I talk to is obsessed with the fact that ovarian cancer is the ONE cancer that always comes back. This has made me think too much. What if it comes back? What if it tries to kill me? What if it DOES kill me?  What? Blah blah – what about Aj, I don't want to leave him alone - what about this that and the other? It's scary.

I haven't even CONSIDERED where I will be buried / thrown etc. But I must.

And I confuse myself further by feeling totally positive it won't come back one minute, then by thinking it already HAS the next. Aaargh!  I am reading Lance Armstrong's book 'It's not about the bike'. He went through this exact same thing. Once you are no longer doing something [like chemo] to kill the cancer, you seem to be at a loss. No action. Just wait and see if it recurs. The first year of remission is so complicated. And it's disturbing to have a mind that swings back and forth between one extreme and the other. This first year is chronic - a low grade terror infests your mind constantly, as the chance of recurrence is highest then.

And, this is the other confusion – should I keep talking to other women who have had OC? Am I simply wallowing in my own misery? Am I dragging it out? Two people [they do not have cancer] have both said that if I keep talking to women who have had the same thing as me, I shall never 'Get Over' my cancer [get over it? hahahaha – is that even a remote possibility??]. Neither of them were being mean – they were trying to help me. But I am frightened of being alone with my cancer. So now I don't know what to do.

Today I was told I am 'obsessed'. What?? Of course I am obsessed, obsessed with making sure other women know about ovarian cancer. Obsessed with spreading the word. Yes. But generally obsessed? no. I don't think so.

The group of women I am involved with are fantastic – we all understand one another, as we've all had the same thing – Ovarian Cancer [apart from one friend – she had cancer of a different type]. We swap tales, we swap knowledge. But, we talk about recipes and garden plants, children and hopes and dreams – sex and the lack of it, work, hair colour [of course! now that we HAVE hair]. We do not OBSESS about cancer. But right now, one of us is dying. And I understand that. It is a warning of the 'worst case' scenario. But, for others, it may seem I am dwelling on things I don't need to. But I dwell on those things anyway. Better to know the facts or live in blissful ignorance? I think the former.

It is a constant in my mind…the pain I have in my side – is it the cancer come back? Is it an adhesion [please let it be an adhesion!]. WHAT IS IT???!!! And the people I can talk to about this are the women who have the same thing. The women who are also sitting awake at night, wondering what the hell is going on in their bodies – the women who also have the exact same pain that I have. Why, why would I want to cut my connection with these women?? How would it help me to pretend I didn't have cancer? How would it help me to pretend I am a normal person who doesn't have to think they may die within five years. How would it help me to be alone with my thoughts? I don't think it would. It's not the same as 'knowing someone who has cancer' – THAT you can get away from, cosily in front of the fire, you can forget about them – not cruelly, but it's human nature to try to concentrate on the good things, which is what I always did. Before I had cancer.

So. Would it help me to be alone with my thoughts? I think not. I actually think I might go mad. I am not sure I will ever 'Get Over' my cancer. How depressing. Get over it?? Give me a break – it's always there like a childhood monster in the cupboard – but this time it's real.

So now I do know what to do. For now.

LIVESTRONG Day

LIVESTRONG Day - October 2, 2009 - is a global day of action to raise awareness about the fight against cancer. Sign up to host your own event and help reach the goal of 1000 events in communities across the world.

For those of us in the West Country, the nearest event is in Ivybridge, see here. Click on the yellow arrow near Plymouth. The rest of you, just put your postcode in, and you will find something. Next year, we will have an event in Devon for sure!