Not so brave

This is both physically and emotionally exhausting and some days I really struggle to cope. Today is one of those days. I cry from overwhelm, I cry at the situation I am in, I cry for the children I'll never have, I cry for the life I won't live. I cry because I feel ill. I'm not brave today.

I feel hot, I feel cold, I feel tired, I feel sick. I feel fed up. I'm sick and tired of feeling sick and tired. 

Last week I tried so hard. I had a panic attack on Sunday. It was exhausting and terrifying. I was enjoying a lunch with some friends and all of a sudden, this crushing overwhelming panic exploded in me and I had to get out. I got outside and sat on a bench crying and shaking. Rob got me in the car and I sobbed and hyperventilated the 40 minute drive home. We got home and I crashed on the sofa, it really took it out of me. Monday I still felt awful. Michelle came over in the afternoon, hugged me and I just sobbed. Full on blobby tears of emotion. 

On Tuesday I turned a corner, I worked from home and I had my counselling, the counselling really helped. We explored the fact that so much has happened to me over the past 11 weeks and that even one part of what I've been through would break some people. We also explored my panic attack, identified potential triggers and talked through both some psychological and practical ways of coping in the future. He helped and I felt good.

The rest of the week I continued to improve, I was more like me. I worked from home, really properly worked every day, I walked the dogs, I went to the cinema with Michelle, we all saw a glimmer of Jojo returning. 

But then blam, I feel shit again. It started last night with severe pain in my lower back and hips. I took ibuprofen and omeprazole and it started to go. I had a good nights' sleep, other than waking up feeling hot a few times, but when I woke up in the morning I needed the loo. I took my 5 tablets and then went to the bathroom. What followed was forty minutes of the most painful constipation ever. It reminded me of the awful constipation I had on chemo. This is gross but I've always strived to be honest in my blog.... The poop was so compacted and hard it was making me cry out in pain. Rob had taken Fagin to the vets for a check-up and I could hear Poppy crying downstairs, but I couldn't get to her. It was just stuck and sore and not going anywhere. When I finally managed, oh the relief! Once I'd been, although I felt better there I began to feel meh.

I got downstairs onto the sofa at 09:45 and I haven't moved all day. I feel dreadful, but mercifully not in pain. I feel hot and cold, so so nauseous and just not right. I don't know if these are side effects of the new pills or what, but I'm not good. All I've managed to eat and drink is a glass of water, a smoothie and an iced lolly. It's almost 8pm and I'm still on the sofa now. I feel guilty for not embracing every day I have left, but sometimes I just can't. But I'll try again tomorrow.

Bone scan, new drug & a bit of a blow

Today I went to Guildford for my bone scan for the trial. First we had a chat with the trial nurse Avril who wanted to see how I was and also wanted to discuss my new hormone therapy drug letrozole. We spoke about my anxieties about eating and my nausea and also about my pain in my left hip and back.

Avril then revealed some sad news to me, the cancer is also in my spine. Fuck. It's in my lower lumbar region. I can't begin to explain how devastated this makes me. I know it won't change my treatment plan, but just knowing it's somewhere else is a complete hammer blow. To me, spine damage means more risk of paralysis so I am beyond terrified.

Then I had to go down to the nuclear medicine room for some bloods to be taken (again from my sore arm!) and have a radioactive injection for the bone scan. Both went without a hitch thank goodness and then we went back up to wait for my meeting with my trial oncologist TC.

We waited for about an hour and then had my meeting with TC. He again waxed lyrical about the wonderful ribociclib drug, gave me lots of advice on nutrition and spoke to me about my fears about the side effects. I also explained how devastated I was to receive the news about my back. He told me  that it really didn't make a difference to the plan and that I was just to control any pain with painkillers. It's hard because I'm so scared about it, but he seemed not to be concerned.

After the meeting, I went down to nuclear medicine for my bone scan. I lay on the bed and the camera came very close to my face. It took about 35 minutes. I could see some images on the screen near me. Now obviously I don't know how to interpret scans but I could see my skeleton and bits on it that were lit up. Last time I had a bone scan I saw loads of lit up areas all over my ribs, I couldn't see much at all there this time so hopefully that's a good sign and means the rads worked. I could still see the sternum shining and a bit in my shoulder area, but the new bit I couldn't see last time that I could this time was my hips and lower back. So with the news I'd just been given about my back, this makes sense. Last time I didn't know I had secondary cancer, this time I see the areas and it's just a case of being more informed.

After the scan I went back up to find Avril who gave me my prescription of letrozole. Earlier I had explained to TC how scared I was about the side effects of this drug. He said that yes I may get some SEs but that if I took the pill that afternoon, by bedtime, cancer cells would be being killed. Blimey.

We got home and I took the first pill. So a difficult and overwhelming day, but at least the systemic fight has started.

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!