Good News

Hoooooooooooray!!

Today I went to the surgeon to discuss the results of last weeks' MRI & mammogram to see whether I would need an MX or a Wide Local Excision (aka WLE). When we last met (because of the microcalcifications that were present when I was first diagnosed) they were erring towards the MX. However, chemotherapy has worked its magic :) I appear to have had 'a complete radiological response to chemotherapy' so the whole MDT are really pleased & I am now having a WLE instead.

Am booked in for surgery on 18th December, so although I'll feel tired for Christmas, at least it won't be the larger operation they were contemplating. Does mean I will need around 3 weeks of radiotherapy in Guildford every day (100 mile round trip) starting sometime in January, but that'll be another road bridge to cross when I come to it....

Little postcard from Han     

Exciting Delivery

Look what I got in the post...

It's an invite to my own Hen Party in March at Gleddoch House Hotel - very, very exciting!!

Getting Published

A few weeks ago I was really pleased to be contacted by Macmillan, who on having read this blog, asked me write a one-off guest post for their Community News Blog.

It was published today on Macmillan's website and on their Facebook page :) It has already been seen, shared and liked by many, many people. Hopefully it will help other people going through what I did to feel more prepared and not so alone. (Feeling dead chuffed!)

Brighton Young Women's Forum

I have just come back from 2 fantastic days in Brighton at Breast Cancer Care's Younger Women's Forum.  It’s ten years since Breast Cancer Care held the first Younger Women’s Forum. They run six forums a year around the UK, each bringing together around 30 women under the age of 45 for two days of tailored information, support and sharing experiences. Before I went I was pretty apprehensive. The thought of signing up for two days away from home with a group of strangers, whilst dealing with treatment for breast cancer, didn't exactly fill me with joy. I had visions of everyone sitting around being miserable and making other people feel low. I also had silly visions of everyone taking their wigs off in a Roald Dahl's The Witches stylée! In the end I made the decision to go (and I'm bloody pleased that I did).

So What Was It All About?
I had made friends in advance with a couple of girls on Facebook (via a Young Women's Group) and arranged to meet one of them, Nicola, at Brighton station. We grabbed a taxi together to the Old Ship Hotel, and went into the reception room where we were given our name tags which also said our locations on. It was nice to see a few other girls from the Sussex area, and we had a quick chat before moving upstairs to the main room where we would be located for the next 2 days.

One of the women running the forum explained how everything would work and then we went into our first session which entitled "Medical Update - Management of Breast Cancer in Younger Women". It was very interesting and we could ask any questions we wanted. After that we had lunch and I met a lovely girl called Amie.

After lunch there were various Break Out Groups covering the following topics:

• Breast Surgery & Reconstruction
• Menopausal Symptoms
• Relationships & Communication

You opted one to go to of the sessions and then there was an hour's information session on your chosen topic.

We then had a refreshment break before moving into a Well-Being Session of either:

• Laughter Yoga
• Relaxation

I chose relaxation and had a great session where I almost fell asleep as I was so relaxed!

After the Well-Being Sessions there was free time for a couple of hours before we came back to the main room to watch a mini film. The video was celebrating 10 years of the Younger Women's Forum and featured women who had previously attended the forums.

After the film, we went down to the main restaurant for dinner which was followed by drinks and gossiping in the bar :)

The next day we started with a session about the different services provided by Breast Cancer Care (you can find more out about the services by following this link) which was really interesting as there were a fair few I hadn't heard of before.

After that we went into Break Out Groups again. This time the topics covered were:

• Intimacy & Sexuality
• Fertility After Treatment
• Lymphoedema

After a break, we moved onto a session on Healthy Eating & Diet myths which was really interesting, there are so many things going round about Dairy, Sugar, Soya etc. It was good to be informed so that I could make my own decisions.

We had lunch, and then moved onto a session from 3 speakers who had been affected by bc in some way. One was a lady who now volunteers with BCC, one was a man whose wife sadly passed away from bc and as such he is now a prolific fundraiser for BCC, and another was a lady who had been to the Brighton Forum last year and gave us a chat on "Moving On".

After that we had a session on exercise where we were given some information, and then we had to get up and actually do some exercise!

Then the forum was over :( It absolutely flew by and was brilliant. We all exchanged email addresses and have since set up a Facebook group to stay in touch with each other.

Some of the group from the BCC Brighton Forum

If anyone is in a similar position to me and is thinking whether or not to go to the forum, please do. It was fantastic. The whole thing (including the hotel and all meals) is completely free (funded by BCC) and what an amazing lifeline it is.

The MRI

Today I went to East Surrey Hospital for my après chemo MRI. It suddenly occurred to me whilst I was in the MRI waiting room, that if you haven't had one before, then the prospect of it must be pretty blimming daunting (& to be honest, it still is fairly horrid even if you have had one before).

So, although I had had an MRI before, it was right at the beginning of this rollercoaster, and to be honest with you, I couldn't really remember what had happened. I thought therefore, it would be a good idea to explain exactly what happens, to try to alleviate some potential fears.

Firstly, what is an MRI? Well, according to Wikipedia, an MRI (Magnetic Resonance Imaging) is a way of seeing the body's internal structures in extreme detail.

An MRI scanner is a device in which the patient lies within a large, powerful magnet where the magnetic field is used to align the magnetization of some atomic nuclei in the body, and radio frequency fields to systematically alter the alignment of this magnetization. This causes the nuclei to produce a rotating magnetic field detectable by the scanner—and this information is recorded to construct an image of the scanned area of the body. Magnetic field gradients cause nuclei at different locations to rotate at different speeds. By using gradients in different directions 2D images or 3D volumes can be obtained in any arbitrary orientation.

MRI provides good contrast between the different soft tissues of the body, which makes it especially useful in imaging the brain, muscles, the heart, and cancers compared with other medical imaging techniques such as computed tomography (CT) or X-rays. Unlike CT scans or traditional X-rays, MRI does not use ionizing radiation.

To start with, you are sent your MRI appointment letter and given a questionnaire (similar to this one) to fill in.

When you turn up at the MRI department, the image radiographers explain what is going to happen. I was told that I would be inside the MRI for around 20 minutes - but I have read in some cases people can be in the tube for around an hour, so it must vary from person to person.

Then then asked me to strip down to my pants, pop on two gowns, and remove all metal objects. This means you need to take off all jewellery (including your watch) and then put them into a locker.

After that I had to get onto the bed and they told me they were going to put a cannula into a good vein. It took them a while to find one, but they eventually found a good one in my hand. The cannula was put in because I was having what is known as an MRI with contrast, where half way through the scanning I would be flushed with dye. (What the dye basically does is enhance scan images).

I was then led through to the MRI room where the scanner was (East Surrey have this year had a new £750,000 MRI scanner installed which is unique in the UK) & they put a marker (which looked like a cod liver oil capsule!) on the side of my breast.

This is what an MRI scanner looks like:

I was then asked to open my gowns, lie face down on the table (which looks like one of the ones you find in spas when you're having a massage) & position my boobs. The compartments I had to put my boobs into can only be described as feeling like the salad drawers in the fridge!

I then had a huge pair of headphones (no music, just to block out the noise) placed on my head, given a buzzer to squeeze if I felt I needed to, and told to lie very still. This is probably a good point to remind you to use the toilet before you have your MRI as you can't move during it, and needing a wee isn't very conducive to staying still!

I then had a cushion out under my legs which the automatically inflated & asked me to position my arms above my head. The table then automatically moves you backwards into the scanner & it begins. I can't tell you if it was dark or not because I was facing downwards & I kept my eyes shut the whole time. I had to also keep reminding myself to breathe as I found I was holding my breath!

The noises are very loud and sound almost electronic or like computer game sounds. They are also not rhythmic and are different lengths & frequencies, so rather than listen to them, I tried to just block them out by thinking of other things. I found this YouTube video helped prepare me for what it would sound like.

About half way through the MRI radiographers spoke to me, asked if I was okay and then explained I was going to be having a scan which would last about 8 minutes. That happened and then they spoke again & told me they were going to automatically start the dye going in. The dye felt cold up my arm but nothing else. Then I had around another 15 minutes of scans and it was finished.

The table then releases you from the scanner & the radiographers sit you up very slowly (as my legs had gone to sleep). They then took the cannula out of my hand, I got dressed and (after being told to drink lots of water to flush the dye from my system) I was free to go.

The thought of the MRI is definitely worse than being inside it but I'm still very glad it's over and done with.

More Like Me

Now the chemo is disappearing from my system, I'm feeling more & more like my (old) self every day :)

One very exciting thing that happened week, I found my wedding dress.....! Obviously I can't post details on here in case Rob is reading but it's absolutely beautiful.

Michelle & I had a Christmassy week. On Thursday went to Cuckfield Christmas Boutique Shopping evening & went for dinner. At the Cuckfield fair we met The Amazing Balloon Man & I got a ginormous flower balloon made for me :)

Today we went to The Ideal Home Show at Christmas at Excel. Had a fab (but tiring) time and I got a fair few pressies sorted.

Couple of thank yous needed:

Han, thanks for my fab little postcard

 

Thank you to Ross for my scrummy treats from Makana Confections which came all the way from New Zealand :)

The top box are Lemon Truffles & the bottom box is Orange & Macadamia Brittle - Get in my belly!



Top Tips for Getting Through Chemo

Today, if I was still having chemo, I would have been going up to Guildford to have cancer killing poison pumped through my veins. As it is, I am now a fully-fledged chemotherapy graduate (whoop!), so I thought it would be a good idea to share my own top hints & tips for getting through chemotherapy.

Before I was diagnosed, I had never read anybody's experience detailing the process of chemo, and to be fair, why would I have? So when I was diagnosed, one of the first things I did was hit the internet. Although there is a lot of scary stuff out there (a whole load of which is out of date), I did come across this webpage which is one woman's experience of chemo. I found it particularly helpful to read as she was having the same type of chemo as me. So many women have a great fear of having chemo. I was one of them. As coincidence would have it, I actually ended up talking to this lady on one of the forums I belong to for about 3 months before I realised it was her :) Thanks RevCat xx

The main reason for sharing my hints & tips is that although I found these tips (from the Breast Cancer Care Forum), particularly helpful, I really wanted to share what I personally had learnt and how I had got through the (hideous) rollercoaster that is chemo.

Visit the Chemo Ward:

• If possible, visit the chemo ward before you start treatment. I was able to go to the ward at Crawley before I had FEC which helped put me at ease, as I really knew what to expect. When I switched to the T at Guildford, because I hadn’t been there before, and therefore didn’t know what to expect, I was absolutely terrified. I had read so many scary stories about T, so I felt as if the chemo nurse was leading me to the electric chair. I had no clue what was going to happen and how I was going to feel afterwards. I know that if I had been to the ward beforehand, it definitely would have helped me.

Oral Hygiene:

• Have a read of this helpful link from Macmillan
• Chemotherapy kills off the fast-growing cells inside your mouth so make sure you visit the dentist before you start to check you don’t have any underlying issues that may become worse during your treatment.
• Chemo is really a time to listen to your mouth. Use a mild, dry toothpaste (I used something called Biotene) and a mild alcohol free mouthwash. I also used a child’s soft toothbrush and changed the brush every chemo cycle.
• During the T part of my chemo I developed oral thrush every time I had treatment. Yuck. Oral thrush shows itself as a white furry carpet on your tongue, makes everything taste creamy, metallic and disgusting and makes your tongue feel flabby. If you develop these symptoms, get thee hence to your GP, and get them to prescribe Nystatin and/or Fluconazole. I also had a toothbrush set aside (again changed every cycle) specifically to brush my tongue with. Made me feel sick doing it, but definitely helped clear it quicker.
• On the T part of my chemo, one of the nastiest side effects was that the inside of my mouth peeled. It was truly horrible and made me feel sick as I constantly felt like there were bits of skin in my throat. I mentioned this to my chemo nurses who suggested something called Difflam. Difflam works by reducing inflammation and also acts as a local anaesthetic, causing numbness and so pain relief.
• When my mouth peeled, I had a yucky flabby tongue and everything tasted of cardboard; the thing I found that helped more than anything was Del Monte pineapple ice lollies. Ice lollies are great because they help soothe sore mouths, and also pineapple is a natural cure for oral thrush so you’re getting two benefits with the one lolly. Definitely stock up on these!
• Addition from 2013 - My dentist has now prescribed me something called Duraphat which helps lessen tooth decay during (and after) chemo

Food:

• After you’ve had chemo, don’t eat anything you like. It sounds silly, as you might really be craving a certain type of food, but after chemo is finished, you will forever associate said food with chemo and nausea.
• When you are having chemo, I was told to suck mints to take away some of the funny metallic taste that you get in your mouth. I took humbugs. However, the thought of humbugs now really makes me feel sick. So I’d advise you not to take your favourite sweets!
• It seems logical to say, but eat right, eat healthily. Have a look at this helpful link from Macmillan about eating well.
• Your appetite will be peculiar during chemotherapy, some days you will want to eat everything and the next day you will barely feel like eating anything. Some people gain weight, I lost weight.
• Your taste buds will change. Chemo affects them and for me the result was that things tasted metallic.
• For me, bland food was what I wanted, especially when I felt nauseous. Mashed potato, rice, ice lollies, apple purée. Some people like more strong tasting foods like chilli, curry, highly spiced foods because they can actually taste it. In the end, it all comes down to what your body is craving.
• I also really craved pineapple (fresh/chunks/drinks/lollies) – it was one of the foods I could really taste.
•  Life Mel Honey
• I was told to avoid certain foods and follow a “pregnancy diet” during my chemo. This is due to your immune system being compromised and therefore your risk of infection being greater. I was advised to avoid soft cheeses, pâté, shellfish, cured meats, bagged salads, live yoghurts, buffet food,
• Heartburn can be a very common problem, some people say milk is a good cure, others say it can make it worse, I found it helped me, as did mini milk lollies. I also spoke to my chemo nurses about it and got prescribed Omeprazole. At first it didn’t touch the sides so I was told I could take double the dose which then worked.
• Constipation can be a massive pain in the bum (ha ha!). On FEC I didn’t manage to go to the toilet (after each cycle) for around 3 days which was very painful. Natural remedies are prune juice and kiwi fruit. I also took Senekot which worked too well!

Water:

• Water, water, water. This may sounds boring but it makes such a difference to recovery time. Drink plenty of water before, during and after chemo treatment. It will help to flush the chemo through your system, and will help to keep the bladder from becoming irritated.
• If you do end up with oral thrush, water can taste horrible (creamy, oily and metallic) so have some flavoured squash on hand to take this away.
• I also had a supply of straws to direct the liquid over my tongue (where the horrible taste was) and this really helped me to drink more.

Keep a Diary:

• Write down how you feel on each day, that way when you have your next cycle, you can look back in your diary and see how you felt last time and you will know what to expect.
• In your diary, log your liquid intake. That way you really force yourself to drink the recommended amount (6-8 medium glasses per day).
• Avoid people with colds, infections etc during your low blood count days
• Plan nice things – using the diary you should know when your body is bouncing back. See friends, go to the cinema, just be you.

Red Urine:

• If you have Epirubicin, don't be frightened if your urine is red or pink tinged, for 1-2 days post administration. This is normal and is due to the red colour of the Epirubicin.

Hair Loss:

• Have a look at this helpful link from Macmillan
• A couple of my blog posts on this subject are here and here
• Info on Cold Caps
• Get your wig ahead of chemo. My blog post on finding my wig
• I got my long hair cut short pre-chemo ready for the inevitable hair loss as it was a kind of half way stage between my long hair and total loss.
• Your hair tends to start shedding around days 14-19 after your first chemo (your lady garden tends to go first!)
• Some people suggest shaving your head when your hair starts to fall out as it’s more empowering, and allows you to take control. I personally didn’t shave mine because I liked the idea of keeping a little bit of hair (no matter how small) poking out the bottom of my hats, bandanas, scarves etc.
• Websites for buying hats and bandanas
• www.buffwear.co.uk
• www.hats4heads.co.uk
• www.theindiashop.co.uk
• www.randrconfidence.co.uk
• www.scarfhut.co.uk
• http://www.annabandana.co.uk/
• www.trendswigs.co.uk
• This one is also lovely but a little pricier: http://www.suburbanturban.co.uk/
• Your eyebrows and eyelashes will dramatically thin (or you may have total loss). Here’s my post about eyebrow & lash loss
• My head hair has already started to grow back and now, 3 weeks after my last chemo it’s about 1cm long all over. (I still have some of my “original” hair left too). I think my eyebrows are coming back too but not 100% sure!
• Have a look at this amazing YouTube channel from my YBCN buddy Andrea

Nails:

• My tips for looking after your nails can be found here

Skin:

• On chemo, your skin will be awful at first but then suddenly become smooth and glowing. There is a known SE called Chemo Glow!
• I got some fantastic paraben-free products from Tropic and Balance Me to nourish and care for my skin.

Nausea:

• Take all the anti-nausea medications that they give you as directed; do not wait until you feel sick as by then it will be too late. I did exactly this and was only sick a few times throughout my whole chemo experience.
• If you do have nausea though, have bland food, little and often.
• Ginger is good for nausea, ginger biscuits, crystallised ginger, ginger ale, arrowroot biscuits – all helped me.
• It is very important to eat something (no matter what) and keep hydrated.
• My nausea meds (Domperidone – sounds a bit like Dom Pérignon!) worked very well for me, but from the forums I’ve joined, I’ve heard that Emend is a stronger one that helped those who suffered more than me.
• I also heard of people using seabands as natural relief. I haven’t used them so cannot say if they work or not, but at £8, I think they’re probably worth trying.

Comfy Clothes:

• Get some comfortable and cosy clothes before you start chemotherapy. I went to TK Maxx and bought some jogging bottoms and hoodies which I lived in throughout my journey.

 Work:

• Some people choose to work during their chemotherapy and others don’t, it really is a personal decision.
• I’m very lucky in that my work fully supported me throughout my chemo. I was able to be off sick, work from home or go in to work depending on how I felt and that was a massive anxiety lifted off my shoulders.
• Macmillan provides some very helpful information for both employees and employers. It can be found here

Support:

• When you’re first diagnosed it is so totally overwhelming that you don’t know what to do.
• I joined a couple of forums: Breast Cancer Care, Macmillan and a Young Women’s group on Facebook and they have been a massive lifeline for me.
• If you can find a support group in your area, then please join one. I go to the Olive Tree which offers all sorts of treatments and support. There is a young women’s group once a month called Olivine which I attend at the centre. It’s great because I felt so young when I was first diagnosed and knowing that others of a similar age are out there is a massive help.
• Friends: One very difficult thing I learned is that some people in your life will stop contacting, visiting and calling you. I’ve spoken to other people going through the same thing as me and this has happened to all of them. I still don’t understand why and it’s pretty hard to deal with but other friends have really stepped up and I feel blessed to have them.
• Help yourself to deal with this. Try not to look at the whole picture. Take it one step at a time. Focus on each day at a time; then move to the next day and then the next day. Before you know it, your treatments will be over. I still can’t quite believe chemo is done.

These are just my tips though. Please remember that everybody is different. Although you can read blogs, join forums etc, you need to remember that the person you are reading about is not you. You need to really take the time to listen to your own body and do what feels right for you.

I hope that through this blog so far I have told it like it is and that it may have been helpful in some way for at least one person. If one person has found it useful then I've achieved something.

So, now, I’m starting to get ready for the next part of the journey where I become a beginner again. Any words of wisdom would be very welcome!

Part Deux

It's coming into week 3 from my last chemo & today I had a meeting with my surgeon at East Surrey Hospital. The surgeon is pleased with my response to chemo & all the signs say that the lump has really shrunk.

This means that my next steps are an MRI & mammogram within the next fortnight (I hate MRIs, so claustrophobic!) Once I've had those, the results will determine if I have a lumpectomy or mx (mastectomy). This is because although the lump has shrunk, I do have some microcalcifications behind the lump which they want to investigate in case they are DCIS. If they are, then an mx will be on the cards, which is (yet) another thing to contend with. However, everyone I've spoken to through my forums, at Olivine, & through a young women's group on Facebook, say that chemo is by far the biggest challenge (compared to surgery) & I've already completed that mofo.

After the meeting with the surgeon, we met up with Carole, my Macmillan BCN, who explained a bit more about surgery, the mx, reconstruction & a few other bits. I also showed her my nails (which have completely yellowed), but she said she thought they looked pretty good compared to others she's seen, so fingers crossed on that one.

All a bit overwhelming but at least I have the start of a plan for the next stage in this journey.....

Finishing Flowers

Some gorgeous flowers from Sharon & Simon:

Funky Flower Card from the Colyers:

Thanks guys, they're lovely x