Today has been a grey day. The sky has been grey. My jumper is grey. My face is grey. And to be honest I have felt a little grey. Maybe more than a little.
I had my first dose of Taxol two says ago. It’s been ok ish. I feel sleepy and weary. I have had sore spots breaking out on my hands and feet. I have had various strong aches which ibuprofen has mainly dealt with. My eyelids are very red and look half shut. But it’s not too bad. Bearable. Manageable.
The lack of energy has meant I’ve been a bit bored. That’s probably why I feel grey. I feel like taking a picture of myself and posting it on Facebook and telling all those people who smoke to stop it right now because cancer makes you grey. To be fair, I’ve felt like shouting at people who smoke since I first got my diagnosis. It doesn’t quite seem fair that smokers can get away with it but lots of us don’t do anything too unhealthy and still get cancer. A lot of people who smoke don’t seem to care if they get ill. I want to show them that they should I care because being ill with cancer ain’t fun.
Grey grey grey.
The fact that it is almost dark before 6.30 in the evening isn’t helping.
So I’m trying to plan ahead to when it’s not grey. I guess that means next spring. I have 101 ideas for holidays and I’m impatient to book. I want to look ahead, beyond the grey, to the orange and red and yellow and pink. Those are happy colours. Sun. Fun. Nice things. Yes please. No more grey.
This is a post I’ve been meaning to write for a while. It’s all about the amazing people who I don’t know and yet whose support is helping me get through.
I’m a big Facebook user. Don’t have time for any of the other social media sites, but FB has been my “thing” for a long time. It’s bloody annoying and frivolous and silly but it has its uses. And since Genghis appeared it’s been amazing.
Through FB I have reconnected with people from school. We all appear to have done quite a lot of growing up in the 19 years since school finished. The goodwill messages have been phenomenal.
There are a million and one mummy groups on FB but there’s one in particular I’ve turns to regularly and particularly since Genghis. FrankMums is a collection of ladies with things to say. The rules are that you can say what you want without being judged. Some ladies rant about family members. Some rant about work. Some let off steam about the pressures of being a parent. Lots take the mickey out of other, less “Frank”, mummy groups. I’ve been using it to share some of my Genghis experiences. And oh my goodness, the support I have had! These women, ascerbic at times, rude at others, have been wonderful. Beautiful messages. Offers of food, childcare, alternative therapies. Donations to charity in honour of me. And the best of all – a new real friend, emerging from the pack, going through the same thing at the same time, helping me and letting me help her get through the madness of it all. We have the same surgeon, the same oncologist and the same outlook on life. She’s brilliant.
And then there are all the breast cancer FB groups. Dozens. And the young cancer groups. Some of them do my head in a bit. And I have to keep reminding myself that the people who get through this nonsense usually move on and don’t hang around in these groups any more, so of course the slant is more likely to be negative than positive. But, that said, there’s one in particular that’s been very helpful. The Young Breast Cancer Network is run by some amazing women and hosts the views of some other amazing women. So much to admire. The lady who is a makeup artist, posting online tutorials advising how to use make up for those who are suffering side effects. Those going on TV and radio and doing interviews to raise awareness and money for charities. Those who bother to reply to the nervous “what?”, “how?” and “why?” posts. Wishing each other luck with the next chemo (remembering when someone is due another dose, or when someone is about to finish). Sharing post operative pictures to help others. Discussing fertility issues. And it works because we are all younger women, the ones who aren’t meant to be doing this right now, but focusing on jobs, marriage, kids, life.
I know that some people are very private about their illness. But I’ve honestly found that openness brings its own rewards in the form of phenomenal support from even the most unexpected of places. And that includes complete strangers. In truth, there are many that have been far more present than certain friends, whose radio silence has been surprising and saddening. But these kindly strangers, these faceless friends, have stepped into the breach. Thank you, all of you.
Bone ache. Ouch. A bit like period pains but in my bones and throughout my body. Not pleasant. Better than nausea and chemo brain, but not a walk in the park. Hurry up and go away.
My husband keeps telling me I should publish this blog. To be honest I’m not sure I’m ready. It’s a bit like getting undressed in public. There’s a certain amount I’m not sure I want anyone to see. But that said, it may help people to understand. It may help others going through it. Maybe. Maybe not.
I’m thinking that the end of chemo might be the right time. There is a chance I’ll get trigger happy and do it earlier on a whim, but I don’t think that’s very likely. When I do publish it I might lock myself away for a few days to avoid any comments. I don’t think they will be nasty – just a bit cringeworthy!
Anyhow. Assuming this is made public one day, there are so many people who deserve my public appreciation for their general wonderfulness. So I guess this is a good way to do it. This isn’t everyone but here are just a few of the wonderful people I want to thank (and forgive me that this sounds a bit like an acceptance speech at the Oscars).
My darling husband. For loving me and looking after me and travelling this shitty road by my side. For being a rock. For cooking and washing up and doing the lion’s share of everything while I’ve been ill. For fabulous bread. For everything.
My inspirational mother. For doing this again with me having done it once herself. For being the best mother ever. For her strength which I have inherited.
My wonderful father. For caring so much. For the endless phone calls.
My fabulous sister in law. For being closer than a natural sister. For your selflessness, companionship, friendship, honesty and support. For loving me so much.
My big little brother. For coping with all the shit. For making your days on duty so much fun even when they were crappy.
My marvellous Milly and Northern Pa, who have given so much time, love and effort to help us all through this. What wonderful in laws you are.
My vbf and prima prima. You trod this path before me and showed me how to do it. Your strength, love and friendship mean the world.
My BC twinny, for walking down this road with me hand in hand. For being the voice of positivity.
All my lovely friends who have sent cards, flowers, presents, soup, offers of childcare and messages of support. Thank you. They have helped me more than you can know. Particularly my wonderful BNC girlies who I love so much.
My fabulous team at work who have been so supportive and genuinely caring despite me being a newcomer. And indeed all my work buddies who have become real mates in such a short time – Liz, Ads, Tobes, Marek, Andy in particular.
And last but never least my beautiful children who give me my main reason to keep fighting Genghis. You are my treasures and my loves and I adore you both every day.
Thank you thank you thank you.
Today is our 10th wedding anniversary. We have spent the night at the Ritz, been to the theatre and had an amazing breakfast. We are off to lunch at Gordon Ramsey. My fantabulous husband has given me a beautiful diamond necklace. I am living in the moment and I am in ecstasy. It all feels super special and it’s wonderful.
I’ve had a lovely lovely week. My wonderful husband surprised me several times on our anniversary. It felt like being on honeymoon all over again. There was lots of laughter and many tears of happiness. I was very emotional and I appreciated every second. No need to go into details of gifts and experiences but my hub was amazing throughout and so wonderfully thoughtful.
We returned from 24 hours on our own private cloud to the chaos of the kids and a family mini break in Suffolk. We all loved it. Sure, it was hard work with the children, as always – the challenges of having two extremely bright and independent kids. But we had amazing sunshine, good food and lots of fun. The kids really enjoyed the kids’ club and we really enjoyed the fact that they went every day – a first for us. They loved the kids’ cinema and the other kiddie-centric features of the hotel. We loved going to a hotel designed for families with young kids where we didn’t have to worry about them being noisy or boisterous as that’s the whole point. All in all it was really enjoyable and quite a relaxing time.
On the way back we took the kids go karting. They loved it. It was so amazing to see their little excited faces and the exhilaration once they finished – even if their kiddie karts only went at 5 mph!
Then it was back home, back to earth and back to chemo. Today was the 6th out of 8 so I am officially 3/4 of the way through. Hooray. I was fortunate enough today for my fabulous sister in law to be the person on duty. I love spending time with her just chatting and today was just that. Thank you darling.
So all in all, a lovely time. The week has given me such a boost to get through to the end of chemo. All being well it’s just a month left to go. Thank goodness!!!!
Thank the Lord for my work. Genuinely. Honestly. I couldn’t have been signed off and stayed sane. Even working through the fog of chemo is better than endless Jeremy Kyle and Cash in the Attic
But in particular, thank the Lord for work. I started a new job in January and was lucky enough to find myself surrounded by brilliant, fun, motivated, interested colleagues who are all about pulling in the same direction. Even better I have a wonderful fabulous team. I’m the Lieutenant to a truly inspirational Captain. She’s highly intelligent, very quick, fair, kind, straight up, supportive and very hard working. I never hear her complain and she is a very fine yardstick to measure myself against. She hired me in part to take over from her in the medium term yet my illness hasn’t phased her one little bit. She’s awe inspiring. And the team members are also wonderful. Highly intelligent, motivated, great at their jobs and nice people too. Then there’s the work. Top calibre. Incredibly interesting. Fast moving. Great clients. Household names. Cutting edge.
In truth, this is what I have been working my butt off to do. Damned if I’m going to give it up – even temporarily – just because of Genghis.
Also thank the Lord for Facebook. Yes I admit I’m addicted. But as I’ve mentioned before, the online communities I’m in have been an amazing support. It’s also a wonderful way to tell people how I’m getting on without the pressure of sending and responding to individual emails. I’m not lazy but I am tired, so effort sparing measures are very useful at the moment.
Other things that have helped keep me sane:
– texts, cards and emails that don’t demand a reply. I love knowing the support is out there without the pressure to write back.
– gifts. The amount of support shown by a well though out gift is unbelievable. Flowers are lovely as they cheer the place up. Food is always welcome. But the best things have been those where the giver has truly empathised and thought through their gift.
– organising. I’m a huge planner and Genghis is a bugger for putting the kibosh on things. But I’ve still been able to plan my kids’ birthdays, holidays for next year and other fun things. A dash of the normal me. Hoorah.
– those wonderful people who take the load off aka my “staff”. Our nanny. Our housekeeper. Our gardener. My secretary. Ocado.
– conversations about anything other than Genghis.
– the sunshine.
– my iPad.
– my husband. Love and adore him.
This afternoon I saw my third oncologist (is there a collective noun for oncologists? A cancer of oncologists?). Another very lovely man, he didn’t treat me like an idiot but talked to me like a grown-up. And at last I have my Plan. To cut a long story short – after chemo will come the surgery and reconstruction and after that will come the radiotherapy and after that will be the end (at least I bloody well hope it will be). So the order of events is now clear at last and the control freak in me is happy.
Frankly, it’s a bloody good job. It’s been a bit of a shitty week. I was just getting over the side effects of the last chemo and I got hit by a horrid snotty cold. I have been blowing green stuff out of my nose for days now and bluntly it’s disgusting. This has meant that I haven’t had the energy to go into the office so I have been sitting at home brooding. The weather and the lack of light certainly don’t help. To add insult to injury the last 24 hours have involved a small boy, lots of vomit and a special talent of mine – catching puke. Number two child has had a tummy bug and no one except his sister got very much sleep last night. Getting out of the house today was certainly an effort.
This week has made me realise how grateful I am to be able to keep working throughout this whole rubbishy period. Staying at home has just meant that I have watched a load of TV and have been thinking too much about having to deal with Genghis. I feel like I have been reading a lot of negative posts on my online fora which haven’t done my mental state much good. So I need to knock the cold on its head and get back to the office soon as possible.
Having a Plan certainly makes me feel a bit more chipper. I also took great heart from the fact that he seemed quite positive about the spread into my lymph node. He didn’t think that the spread was particularly significant and said he didn’t think that many more nodes would be affected. All of this is good because, if he is right, this means that my cancer is only stage 2 and not stage 3. The terminology doesn’t mean all that much but survival rates are pegged to it and the bigger the number, the scarier the possible outcome. In general, he seemed relatively positive about the whole thing which was certainly good after the week that I have had.
So I feel like I am back on track and back to the normal, more positive me. Hooray.
Last weekend I organised a get together for members of the Younger Breast Cancer Network (UK) in town. We had lunch and tea then drinks (though being old and boring I wimped out before drinks). There aren’t rally enough adjectives to describe the afternoon but it’s worth a shot.
First, though, I ought to say a bit about the YBCN. it’s a Facebook group for ladies under 45 with BC. You can’t just join – you have to be admitted. It keeps the trolls out. It was set up by some girls in Manchester who met at a charity event for younger BC sufferers in early 2013 then quickly mushroomed. Today there are almost 1000 members on the main group, with various sub groups also in existence for such topics as secondary BC, moving on and so on. I am constantly amazed by what seems to be the steady daily trickle of new members. Let no one say that BC is an old women’s disease.
The group is great for so many reasons – mutual support, information sharing, humour that others wouldn’t understand, practical advice, recommendations and so on. Friendships are formed online in a safe way and women all over the country can feel they are with others who just get it. I have huge respect for the ladies who set it up and administer it and who spend a great deal of time on it and on getting the message out there that young women get BC and that they have their own particular issues.
So the meet up. Being the organiser I am I couldn’t help but volunteer to set it up when someone on the group set a date but no one stepped forward to do the grunt work. It wasn’t hard to arrange and, armed with a spreadsheet and iPhone, I was well equipped to deal with the admin. We met in Central London – around 40 women, many of whom had travelled from other parts of the UK to get here. All I had to do was jump on the Tube, so a bit lightweight really.
And now for the adjectives. Heartwarming. Inspiring. Supportive. Fun. Emotional. Encouraging. Delightful. Honest. Funny. Brilliant. Barriers were broken down. Friendships made on line were affirmed. We talked about boobs (of course!), wigs, make up, work, kids, family, cancer, implants, dying, holidays, fashion, cake, booze. With total strangers. What lovely ladies. What amazing ladies. What brilliant ladies. Thank you all. For coming. For being there. For understanding. For everything.
One of my new BC friends, the lovely Sarah, writes a great cancer blog. She is much braver than me and has been sharing it as she goes along – you can find her at http://hbocuninformed.blogspot.co.uk/.
Anyhow, Sarah has started posting on 100 reasons she is grateful for her BC diagnosis. This started me thinking. I’m not sure I can come up with 100 reasons but I can certainly think of at least 10. And I can also think of the 10 things I hate most about cancer. And the 10 people who have helped me the most. And the 10 words I have hated the most. So that’s at least 4 lots of top tens. I might even get to ten top tens. Ten times ten is 100, so I will kind of get to Sarah’s total! Here we go.
10 reasons to be grateful for my diagnosis
1. I’m getting to spend a lot more time with my hub. Admittedly it’s generally in hospitals, which is somewhat less than romantic, but still.
2. I’ve faced up to the fact of my own mortality. Aged 38, death isn’t one of the things I often think about and when I do I usually panic and immediately try to think of something else. I’ve had to change my attitude. I’m not scared any more. I just want to live to see my kids grow up and my husband grow old.
3. I’ve been pushed to do things I always wanted but never got around to. This is most definitely NOT a bucket list but rather a realisation that life is short so you need to get on with it. So I’ve learnt to ride a bike and I’m learning to ice skate with Tali. Next spring we will learn to horse ride. And then skiing. Simple things.
4. Life is now at a slower pace. Not my ideal, but probably good for me, at least for a while.
5. I know who my friends are. Those who care. And also those who haven’t been in touch. For whatever reason.
6. Objectively, it’s been interesting. I’ve learnt a bit about a type of medicine and treatment. And I like learning new things.
7. It could be a lot worse. There are no signs that it’s spread. I don’t carry the BRCA genes. I found the lump early.
8. I changed my hair style – at last! I’m not going to keep the bald look but I am aiming to grow it back in the shorter style I cut it to over the summer. Cutting the long style was seriously overdue.
9. I’m hoping to use my flabby tummy to make a new pair of boobs. So I get a boob job and tummy tuck at the same time. Genius.
10. My wonderful new friends. All met online and some in person. In no particular order: Tamara, Kate W, Jodi, Rachel A, Jo F, Cinzia, Lyndsey, Hayley, Andrea, Sarah P, Rebecca S, Clover, Christine H, Joanna C, Jojo G, Rosie, Hilary, Juliette T, Laura Jayne, Caroline F, all of the other lovely lovely ladies of YBCN and all of the super amazing mums on Frank Mums.
Tune in next time folks for my top ten hates!