Cancer, childbirth and the goldfish principle

I went out with a friend on Saturday who had been through breast cancer seven years earlier. She told me that in a year's time I would pretty much have forgotten the whole experience. Now although this sounds utterly amazing, I am already forgetting the last few months, and it's only been a month since I finished my radiotherapy. My friends tell me that childbirth is exactly the same...it's hideous at the time but you instantly forget as soon as it's over. If you're in the middle of treatment or even worse, at the beginning, I can promise you, you will forget the sharp end of it all, and you'll be amazed at how quickly. If someone had told me this after my first chemo, I would have either not believed them, or plotted violence against them (*joke*), but it really is true. I absolutely promise. So, keep the end date in mind (or "keep to the schedule" as Debbie used to say), grit your teeth and before long you'll be out the other side. Really.

Amanda

Me trying to remember the last few months

Feeling at odds with yourself

Having received many an appallingly wrapped but fantastic present from my Dad I know it's what's on the inside that counts. However, having been back at work and socialising normally for a few weeks now, I do feel that what's on the outside doesn't match what's on the inside. I'm not entirely odd looking - I have some short eyelashes now, I'm working hard on losing the three quarters of a stone that Docetaxel left me as a leaving gift and I have enough hair to look like it might have been a bad decision rather than a critical illness. But, I don't feel like me. Sometimes, when I'm talking on the phone to a business contact, or laughing with a friend, I will feel so much like the old me that when I catch sight of my reflection, it really takes me aback. I think once I have a more feminine haircut and can dye it (apparently you can't dye your hair for six months after treatment), and I'm back to full fitness, I can start to feel a bit more like Amanda on the outside as well as on the inside. Bring it on!

Amanda

Me this morning

Guilt or gratitude - that is the question

Now during my cancer experience, I redefined my perception of 'lucky'. Yes, it's really not the best of luck to get cancer at 40, especially when you're a tee-total, non-smoking, clean living exercise freak. However, when you see what others you meet on your 'journey' are still having to endure, you feel like you've really dodged a bullet. Having met up with a tremendously brave lady recently, who has had all sorts of terrible lasting effects from her surgery, and is still battling with the side effects of breast cancer drugs four years on, I felt incredibly blessed to have got through this whole thing relatively unscathed. Another cancer friend is facing some terribly stark choices - the chemo that can stop her cancerous brain tumour from growing any larger has also caused a painful brain bleed and this is a risk she must take if she wants to stay alive for any longer than the paltry two years she has been given. So, on the one hand, I don't feel like I should ride my wave of good fortune by buying a lottery ticket, but I also feel terribly guilty that my story has so far led me down a much more favourable path than many others. And don't even get me started on those poor folk who have an awful prognosis from lesser known (and supported) cancers such as pancreatic cancer. My thoughts and prayers are with those people and their families. I suppose the only thing we can do in this situation is remain grateful for every day we are given, and support those who are less fortunate than ourselves in whichever small way we can. And...plough that guilt into something more positive!

Amanda

The End of Chemo

Well I'm now through my chemo treatment (last one was 3 weeks ago), so I'm now at the end of my 3 week cycle too!
So far I feel pretty good. My hair is currently about 1cm in length (if you can call that a length) and resembles chick fluff. My eyebrows and lashes are pretty much very sparse but some little fighters have hung on until the bitter end...unfortunately, there aren't actually enough that mascara can cling too which I've found out many times whereby I've only succeeded in poking myself in the eye with the mascara wand!
Life is slowly getting back to normal but I'm sure that some people think that now I've finished my treatment, I'm ok and back to 'good old Deb'...little do they realise that I'm still extremely tired, especially by an afternoon and am still suffering from the 'chemo brain' and am pretty sure that this will continue for a long time yet.
I will start taking Tamoxifen on Monday and after reading some horrific stories about the various side effects, have decided not to read anymore and to just go with the flow just like I did with the chemo because each and every one of us is different and the side effects we suffer can vary so much from one person to the next.
Amanda and I both had the same chemo regime but she suffered a lot more than I did. In fact I pretty much escaped most of the side effects but unfortunately, Amanda had my share.
Each and every day, I feel stronger and sometimes I look back and can't actually believe that it's me who was diagnosed with cancer. It's a strange feeling now I'm through the 'other side' and it's only now that I can actually reflect on the last six months since my diagnosis and can now say with pride 'I've done it'.
From my own personal point of view, I've tackled each stage head on. I was diagnosed and once I knew I needed a mastectomy, I just wanted to get it over and done with. When I knew I needed chemo, I was the same, I just wanted to get it started and get it finished and now here I am, six months down the line and my body and myself as a person aren't the same as the person from six months ago. One thing that this whole experience has taught me is that we really don't know what's around the corner and that we should appreciate each and every day that we are here.
Debbie

Eyelash update

OK, so it's now nearly ten weeks post chemo and I actually have eyelashes! They seem to be growing far more evenly across both eyes. They're short and not yet ready for mascara, but they're really growing! Hurrah! My hair is also growing more and more each day. I have almost full coverage, and as long as I avoid bright light (which still reveals my head!) it is almost passable as a truly awful hairstyle.

Amanda

Clearly not really my eye

Guest blog: Being the Dad of a cancer sufferer

When Amanda told me that she had breast cancer the bottom seemed to drop out of my world.  Her sister had died with meningitis when she was fifteen, and for some reason I thought that our family was immune to any more adversity. I had bonded with Amanda from the day that she was born, and had seen her develop into a fantastic young lady, super intelligent, beautiful, and almost too generous and kind for her own good! How could this happen to someone so fit and clean living? It would be so easy to ask why has this happened to Amanda, and why must my family have to suffer again!

However, what good would that do?   Feeling sorry for myself is not my style, and we had to get on with doing our very best to help Amanda through this terrible illness.  In my opinion, in every case I have known  Amanda always seems to know the best route to take, and I really respect her judgement. She suggested that we get things moving quickly, bring things forward as much as possible, thereby  hastening diagnosis and eventual recovery. We used the Nuffield Hospital at that stage, and could have saved ourselves 6-8 weeks which with cancer of course can be so very critical.

Amanda has an exceptional husband, a brilliant group of friends and  a mother and father who love her very much indeed.  I felt that my best particular role was to support Amanda in the ways that I had always done in the past.  Being a father has always come very naturally to me, and I felt that I instinctively knew when she needed my support without ever being told, almost like a sixth sense. That could be by taking her for walk and chat, just calling in to see her unannounced, telephone calls, breakfast / lunch / tea, or whatever else was required at any given time. This seemed to fit in with Amanda’s tremendous support group, and without too much double booking.   

The chemotherapy period was horrendous, particularly coupled with the acute migraine that Amanda suffers from (as I do). Again, just being there to support in any way that you can, and praying your heart out is the very best that you can do. With Amanda being so brave, she inspired all around her to raise their game and somehow we managed to get through it. Some of Amanda’s fellow sufferers were so inspirational too. Debbie in particular showed incredible character when I met her, and lifted me when I felt down. Radiotherapy came next, tiring and not easy, but her husband attended the Cancer Centre every single day. He really was an unsung hero. My wife offered food and love to all concerned which is her strong suit, and every one played their part throughout magnificently!

We are on the road back to normality now, a  very underestimated road. Amanda is back to work, doing her sport and getting her life back. My advice to other fathers who find themselves in the situation that I found myself is to do what you’re good at, be as strong as you can, support your family 100%, and to pray to God for his help…..you will need it.

Amanda's Dad

Guest blog: Being the Mum of a cancer patient

As all mums know, when your child hurts, you hurt. To be told that your child has cancer comes as a devastating blow. Your initial reaction is to want to punch holes in doors and you question what went wrong and why such a decent, clean living, generous and clever person should be the one chosen for this illness. None of this though is constructive or helpful to the patient so what you have to do is accept it and get on with it. The most important thing is to adopt the mood of the patient and be positive and to play to your strengths. If you know you will be stuck in the hospital loo or cry, then stay at home and do what you are good at. Cook a nourishing meal, or buy some food in, buy anything that will make life easier or more comfortable for the patient. Do anything in the background that you can without showing any sadness. Talk about wigs as if it is second nature and watch your child go through all the stages because six months on, after you’ve bought every toilet roll that the supermarket ever stocked and you’ve forgotten what it’s like to go to sleep or wake up without cancer on your mind, your child will be looking better, sounding better and laughing at your jokes.


Amanda's Mum

The Docetaxel legacy

It's two months post chemo and whilst I do feel *almost* normal, there are a few bits of Docetaxel fun that persist. Now I'm not really the poster child for chemo since I had every single side effect going - if I played 'Chemo Side Effect Bingo', I would have been shouting 'house' a lot. However, it's worth preparing yourself for the fact that it does take a while for all the side effects to work their way out of your system. For me the two that are sticking around are the dry mouth and water retention. I'm not sure if they're connected, but basically what happens to me is that I wake up repeatedly in the night with a mouth so dry that it feels like it's turned into a cardboard tube. I drink water, then wake up a while later to go to the loo! I drink all day long and still I have a pretty insatiable thirst, and some days my stomach and ankles swell up as if they're being slowly inflated. It's uncomfortable but not unbearable. I've spoken to the nurse at the hospital and she said that all this is completely normal and could take seven months or longer to fade. So, really it's best to take each day as it comes and not expect to bounce back immediately. Although with this much water retention, bouncing could probably be a good option for me!

Amanda

Hair and eyelash regrowth - a law unto itself

OK, so this weekend (two months post chemo) I noticed that my non-head hair was having a little growth spurt. Of course everyone's different, but here's what happened with me...My thigh leg hair (which is blonde) must have just started growing back this weekend as it's now about 4mm long. I didn't notice it was missing, but it must have been as it was definitely longer before. I don't think I lost any arm hair. All of a sudden this weekend I also noticed that my eyebrows started growing back and I suddenly had a version of eyelashes. I say a version of, since they are really not what I expected! I would have assumed that they would all start at the same length and I would have a full eye of really short eyelashes. Not so! Instead, they are more like the spikes on a cactus. I seem to have some really long eyelashes that all point in different directions - some are folded, others are growing vertically and some are completely flat. I also have a number of tiny short eyelashes that are pointing downwards (nowhere near a full eye). You can only really see them with a magnifying mirror and mascara makes no real difference to them, but they are definitely growing back. I've become a dab hand at falsies so I'm less impatient now than I was (the 'natural' ones are the best as the thicker ones look very obvious and really over-the-top). My head hair gets thicker every day and I reckon in a few weeks I will look like someone who chose very short hair rather than someone who has just had cancer. I can't wait!

Amanda

My left eye

Sharing the cancer experience

Before I had cancer I had only done about three posts on Facebook in my life. I've always been a fan of real life relationships and hated to over-share. I am however, married to a social media guru who shares every second of our lives via his social media dashboard whether I like it or not! I have to say though that during the whole cancer experience, this was actually really useful. There are so many people who want to keep up with your news and check in with you, but don't want to disturb you when you're going through treatment. If like me you choose to stay relatively quarantined during the chemo to avoid infection, you'll also feel a little bit out of the loop on your friends' lives. Facebook is a great way to share where you're up to with lots of people and take the pressure of yourself in terms of answering hundreds of phone calls and texts. What was also really lovely was the amount of positive messages and uplifting comments that really carried me through a very tough time. Plus, you can save these updates afterwards and congratulate yourself on how far you've come. It also seemed to inspire others who were having a tough time themselves. So, go ahead and share!

Amanda

My husband is the one on the left

Cancer, chemo and the weird concept of time

I am nearly two months past the end of chemo and now I've had time to think back, I realise that the concept of time became very fluid during my treatment. I spoke to friend who had just finished chemo when I was about to start mine and she told me that time stood still during the treatment, but afterwards it felt like it had flown by. At the time I was SO envious that she had finished, but also daunted by what seemed like a horrendously long time to wait until the end (six months). After my first chemo I thought that every minute was like an hour, and at some points in the treatment I thought the wait for it to end was interminable. However, things seemed to speed up a little after the fourth chemo and after it's over, time flies by. I've never been a particularly patient person, so it's challenging mentally to know that you're not going to feel well for a long period of time, but my advice would be to stick with it. Aim for as many nice distractions as possible to help time pass - read a lot, walk around the park, watch a box set, write a blog! But be mindful that it will end and when it does you will forget very quickly about the darker moments and get back to your 'new normal' relatively quickly. Then before you know it, you'll look back at your diary and hardly believe it was you that experienced all that!

Amanda

How to behave around someone who has cancer

Before I had cancer I'm sure I was guilty of the old 'look away quick' principle whenever I saw someone with a 'cancer scarf' or bald head. Now I'm far more likely to look them straight in the eye and give them a big smile. Every so often when I was out and about (after the chemo had finished), someone would just give me a look. It's indescribable but just lovely, compassionate and open. I would just feel so much better afterwards. I also preferred it when people were just honest with me. Kids are refreshingly honest - laughing and screaming as you take off your hat and reveal your bald head. Some people have just asked me outright if I had cancer and talked to me openly about it. It's easy to forget that the person behind the cancer is still exactly the same (if a little more weary). They can still laugh, chat to you in a supermarket queue and flex their chemo-addled brains that are still whirring away under that multi-coloured scarf. So if you see someone who clearly has cancer, don't shy away from them, engage with them as you would normally. I'm sure they'll appreciate it!

Amanda 

Going back to work after cancer

Now this really is a tricky one, and completely down to the individual. At diagnosis I thought I would be one of those people who powered through cancer treatment, donning my wig, delivering a presentation with a standing ovation and then taking a brief break for chemo. Hmmm...how wrong I was. I suffered horribly with side effects, particularly at first, and some days, found even moving from the sofa a superhuman challenge. After I got the chemo side effects more under control, I would rest during week one after chemo, and work from home during weeks two and three. I actually enjoyed the mental stimulation, but found it much easier (and safer, due to the low blood count) working at home in my PJs. One week after radiotherapy I've started back, working at home in the mornings, and going into the office in the afternoons. This is working well as I feel exhausted when I wake up, and it means I can get up later and be at my laptop by nine without battling with the rush hour traffic. I would suggest that you really take your time, and decide what's going to be best for you. Listen to your body and don't do too much. Talk to your colleagues and see if you can arrive at a compromise that will work for you and your employers. I'm going to be working part-time for the foreseeable future as I'm keen to ensure that I get a better balance in my life. There's nothing like cancer for getting your priorities in order!

Amanda

Radiotherapy - the aftermath

So, after the challenges of chemotherapy, radiotherapy is nothing much. You essentially just have to lie there on the equivalent of a large photocopier whilst the machine moves around you. There's nothing to see, it's not hot or uncomfortable, lasts only a few minutes and the only awkwardness is staying very still with your arms above your head. I had 23 sessions so went every week day for 15 days (they spread the 23 'fractions' over 15 days). Two weeks afterwards I still have a red square covering my left breast but it's not especially sore or uncomfortable. The worst part is not being able to wear deodorant for a few weeks afterwards! They recommend moisturising the area during and after radiotherapy (for a few weeks) with Aqueous cream (huge tubs can be purchased from any chemist for a couple of quid), and using only Simple shower gel, and that does seem to have done the trick. So, there's certainly nothing to worry about with radiotherapy - for me, it was an easy transition from chemo back to normal life.

Amanda 

The kindness of a stranger

Well, I started back to work last week, and as wigs and I do not get along, I have been revealing my semi-bald head to the world. This has been an interesting experience, largely a positive one. I have been utterly floored on many an occasion by the kindness of a stranger. Now don't get me wrong, many people will stare (largely out of curiosity), but most people will either go out of their way NOT to look at you, or will make a kind (completely untrue) comment. I went on holiday last week and was worried about not looking like my passport picture. I commented to the air hostess at passport control, "bit of a drastic haircut since that was taken", and she replied "Well you really rock it!" How lovely! I also went to the Race for Life a couple of weeks ago, and a woman came over to me, and just touched my hand. The simplicity of the gesture and the look on her face just brought me to tears. It was a sense of kinship and community that only people who have experienced the big 'C' would recognise. So I'd say - if you want to go wig/hat/scarf free, do it! You will be surprised by the kindness and empathy of the people around you. (Make sure you wear sun tan lotion though!)

Amanda

Oncology & Nursing Team

Before you are due to start chemo, you will meet your Oncologist. He/she will tell you exactly what chemo regime you will be having. They will also be obliged to tell you of every single side effect known to man kind that could possibly happen to you during chemo or post chemo. To be quite honest, I would let these go over your head. Your head will already be filled with a minefield of information that you will not remember simply from being diagnosed in the first place. Make a list of questions that you want to ask your Oncologist. I had forgotten details from my diagnosis and asked questions about that.
The best advice that myself and Amanda have always agreed on...DO NOT compare side effects and symptoms with anybody else. You are not the same as the next person. Amanda has pretty much suffered from every side effect listed. I haven't. I actually feel that I've 'sailed' through the chemo with minimal side effects. Yes I've lost head hair, this was a cert. Yes, I've been tired. I had continual sickness for 13 hours after chemo no1 and that was it. I had nausea after chemo's 2 & 3 but this only lasted a couple of days tops.
Keep a diary and fill it in on a daily basis. Look back at your previous side effects and be prepared for pretty much the same each cycle.
You will meet up with your Oncologist before each session of chemo. I would have an appointment with mine on a Tuesday before my Friday chemo session. They will discuss any side effects since your last treatment. Anything at all, tell them and they will prescribe medication that could help. This will be waiting for you and given to you on your following chemo session.
The nursing staff on the chemo ward: One word (bar for the odd misery face-there will always be one)...absolutely outstanding, respectful, caring, wonderful people.
You will be taken into a lovely seating area and you will be seated on a very comfy reclining chair. You will have other patients around you. Talk to them and it really does pass the time.
It is a bad enough experience when you have to have that first cannula in your hand/arm, it's the unknown, the realisation that you are an official Cancer patient. It was at this point, at my very first chemo session that I realised, daft as it sounds, that this was serious stuff. The nurses are amazing and put your mind at ease. They will sit with you and talk to you all the way through the treatment. They will explain everything as they take you through the whole process.
The chemo ward itself was lovely. Take a friend or family member. There are coffee and tea making facilities, they offer you meals or sandwiches.
These nursing staff do an amazing job and I often wonder how they do it, I have only been for 6 chemo sessions, these wonderful people have 1000 patients a week passing through the unit who all have Cancer and are enduring treatment of some nature. They truly are Angels.
Debbie.

Final Chemo Complete

What to expect after the last chemo session?
I left the ward with a strange feeling that I couldn't quite put my finger on. I arrived home and within minutes had my first ' I can't believe I've got through it' tears. I left a very long heart felt message on facebook to thank the so many people who have supported me throughout the last six months.
 My last chemo session was 30.06.14...my diagnosis of Breast Cancer was 30.12.13. 6 months of my life in a kind of blur. You find or I have found that each stage is a process you have to tackle head on...diagnosis, for me, my operation came next, recovery and then the chemo. I don't think I've ever really thought too much about each process in this journey until the process was over and then it was straight into the next stage. Once I was diagnosed, I couldn't wait for my operation, I wanted it over with. Once I knew I would be having chemo, again, I just wanted it all to be over with. Plan your chemo schedule, mark each session on your calendar and once that first one is marked off, you're on your way. On your second, remember, you're a third done. On your third, you're halfway. This type of thinking does help you and really does work!
I keep reading back through my facebook message and part of me still can't believe that it's me I'm referring to. I guess as each day passes by, I will gradually return to 'normal' and start to look towards the future again. Maybe in a few months or even years, I will look back and think of this time in my life as a 'blip' that I went through but came out the other side?
Obviously for now, I have a few months ahead of me that will be a constant reminder..the lack of head hair for a start being the most obvious reminder but since I knew I was going to be having chemo, my thoughts then were 'it's only hair and it will grow back'...If I'm still saying this in 6 months, then I think being tipped upside down into a grow bag may be my next option!!!
Debbie.