Walking with 'The Breast Cancer Beast'

I posted my last blog the day before my final radiotherapy session and it is now almost 2 months on from that date.

We had a great day as a family on my last day of treatment, it was Dave’s birthday, so we had a lovely breakfast in The Almanack (our first real meal out post strict lockdown). The boys took me to my treatment and were waiting outside the unit when it finished, which was lovely as I’d been alone to the previous 19 sessions. We spent the afternoon in Stratford, walking and having ice cream and returned home to find a couple of lovely gifts. Some gorgeous flowers, English sparkling wine and a hand bell! My good friend Jane decided I deserved to ring a bell at the end of my treatment (a ritual usually reserved for children I think) and so she very kindly bought me one! I have to say it felt bloody good to give it a good hard ring. It’s still sat in my kitchen and I have taken to using it to alert the kids when dinner is ready…saves me sounding like a fog horn.

So, how am I feeling 2 months on from treatment?

I’m feeling lots of different things to be honest. Really pleased the active treatment has stopped and my body can now start to recover from the onslaught of procedures it’s had to endure over the last 11 months. Relieved that I am just about to finish month 4 of my Tamoxifen and I don’t think I’ve turned into Mr. Blobby or a psycho bitch from hell just yet (maybe sense check that with Dave?). I’m also not experiencing some of the other side effects that are a possibility which is great.

I am also feeling hot a lot of the time. My chemically induced menopause is in full swing, in fact when I saw the breast care nurse this week I asked her ‘what is the difference between a chemically induced menopause and a natural one?’ She basically said entering a natural menopause is like cycling down a hill with a gradual gradient (peri- menopause I guess) into your actual menopause. Apparently, mine is the equivalent of dropping off a cliff! I did joke with her that right at the beginning of my cancer journey when she explained the road ahead, she never said ‘and at the end you’ll hit your menopause and never sleep a full night again’ she just smiled at me, I guess that would have been too much to take in last September. Weirdly though, when I started really thinking about how I was feeling ‘tired’ wasn’t a word that sprung to mind – my body actually seems to be coping with the broken sleep in its own way. I am also having some acupuncture now which I am hoping, in time, will help.

The other thing I’m feeling is a bit paranoid about every new ache, pain or twinge I feel in my body. I know this is completely normal and I’m pretty sure will ease over time but a couple of times I have had to talk myself out of thinking the cancer has spread to my bones or my lungs. I know this is something that I now must learn to live with and keep in perspective and I’m pretty sure I’ll get there with the help of some very rational friends and the breast care nurses, it will just take time. It probably hasn’t helped that I have some slight discomfort in my lungs which the GP thinks is just inflammation of my pleura (the lining in your lungs) a side effect of radiotherapy. Hopefully this will just settle down in another month or so.

Another development is that I have been to my first real hair dressers appointment for about 10 months, which was very exciting. My lovely hairdresser even managed to get the beginnings of a style out of my very short hair which is another step away from cancer and towards being normal again. I’m still not 100% convinced I like the colour (it has a lot of grey) but I am going to hang on until it’s a little longer and then decide whether to dye it or not.

Tomorrow I have a personal training session with my very good friend Louise and, for me, properly getting back into my fitness regime is a big step towards getting back to normal or creating my new normal.

The final thing I feel is like I am at the beginning of a new journey. This one should be much more pleasant than the last one. This one is all about recovery (my poor body) renewal (hair & nails especially) and discovery (working out my new normal and my new image!).

For those of you who have followed my blog from the start, its is entitled ‘Walking with The Breast Cancer Beast’ partly because that’s what Max called it when I first told him the news about my diagnosis. It is also a metaphor for my journey. I felt as though I was walking hand in hand with Breast Cancer and that at the end of the journey it would let go of my hand (and sadly grab somebody else’s) and I would leave it behind and travel the rest of the journey alone.

It has let go of my hand.

It remains in my head, for now, but it is behind me and I am striding on confidently without it.

For my boys (and myself) I need to stay one step ahead of it, I do not want to meet it again around any corner and will be doing my best to avoid it.

Wish me luck.

Radiotherapy always seems to be viewed as the preferred sibling to chemotherapy. You generally don’t hear of many people really struggling with radiotherapy, so I think that’s why it’s not considered as scary. It still can have some serious short- and long-term side effects but again not deemed to be as bad as those of chemo.

Having done my 19^th session today, I would whole heartedly agree.

For the patient, it’s a really straight forward process. You go every day Monday to Friday (usually at the same time) and all that is required of you is to strip off to the waist, then lie very still in the same position whilst the radiation is administered by machines that rotate around your body.

For the nurses, it’s clearly a very precise and scientific process. Much of your appointment time is spent getting you in exactly the right position on the bed (which incidentally looks like it belongs in ‘Fifty Shades of Grey’ with its contraptions to hold your head and arms in place!). They talk a lot about ‘bed heights, ipsi,  and ant measurements’ and ‘good coverage’ and there’s always at least two nurses setting you up, so you always feel in very safe hands.

Once everything is in place they leave the room, a machine beeps 12 times and the radiation starts. You don’t feel anything at all and, to be honest, despite the slightly uncomfortable position, I have almost fell asleep on the table every day! (That’s probably more reflective of my poor current sleep patterns than radiotherapy being relaxing!)

One thing that did take me by surprise one day, was my very brief reaction (only in my head thank God) to a male nurse. For a nano second, I felt slightly awkward about stripping off and walking over to the machine with my boobs totally on show, although I’m not quite sure why because it feels as though half of Warwick Hospital’s male staff have seen them over the last 12 months one way or another which has never bothered me. I can only think it’s the actual act of taking your clothes off in the room and walking boldly to the table with your boobs swinging as opposed to lying on a bed or peeling back a gown…who knows. Anyway, I very quickly reminded myself that he would have ‘seen it all before’ and any awkwardness faded away.

The other thing that I’ve reflected on is how different treatment feels now because of COVID. Thankfully, my chemo had just finished when the country was locked down, so apart from the operation  I had, I haven’t been into a medical setting on a regular basis since then. Sadly, as a patient, it just doesn’t feel the same. Of course, the staff are still as lovely as ever, but they are, understandably, hidden behind masks and visors and it feels much harder to make a connection with them. Also, you have to go to all treatments on your own so there is no one with you to chat to or have a laugh with. The chairs in the waiting area are all spaced out individually so not conducive to striking up a conversation with a stranger in a similar situation to you (which it won’t surprise you to know I used to do a lot). As I described to my friend Heidi (much to her amusement) it just doesn’t feel like there is any radiotherapy ‘bants’. That’s not to make light of a serious situation, but it’s interesting to me just how much social interaction can brighten an otherwise miserable or potentially scary process.

I’ve been very lucky again not to have suffered too badly on the side effects front. After 19 sessions my chest area is now slightly itchy (looks a bit like a heat rash) but I haven’t felt any discomfort or pain so far which I’m very happy about. My chest area is starting to look like it has a bit of a ‘ready brek’ glow and you can see a very distinct line where the pink skin starts and stops. Apparently, it can also make you feel tired, but I haven’t really experienced this either. My sleep is currently disturbed anyway because of my Tamoxibollocks and its menopausal symptoms but I can’t say as I’ve felt any more tired because of the radiotherapy.

One thing I did learn today was that I need to keep the treated area out of the sun completely for 4 weeks after treatment (makes sense when you think about it) and potentially for ever. I’m not really a sun worshiper anyway but in the summer do where vests with scoop necks, so may need to re-think that part of my wardrobe, especially when we ever get back to going abroad. I guess it’s a good excuse to keep my cover up over my bikini whenever I return to Ibiza!!

Tomorrow it will be one week short of a year since I first found the lump in Cornwall on July 21^st 2019 and it is my last radiotherapy session marking the end of my active treatment. it’s also Dave’s birthday. I have been focusing on this date since diagnosis last September, it’s what has got me through and it’s weird to think I’m almost there.

I anticipate feeling a little emotional tomorrow. Of course, I will be hugely relieved to get to the end of the treatment, I am grateful that I’ve coped with it, that my boys haven’t had to watch me suffer and that I’m still smiling.

It will mark the start of recovery and hopefully life returning to normal (as much as it can with COVID).

It’s also quite scary.

When you’re actively being treated for cancer you know it hasn’t got much chance of surviving, but when treatment stops, and life goes back to normal, it’s going to be difficult not to wonder who’s winning the fight, you or it.

Over the next few months (and even years) I will need to find a way, that works for me, to remain vigilant to any physical changes in my body without being paranoid, a tricky enough tightrope to walk.

But for tomorrow, I will park that dilemma. Tomorrow is about celebrating life.

I have given my boys the day off school, we are going out for breakfast to mark Dave’s birthday and they are all coming to my treatment with me, so they will be waiting in the car for me when I come out. We are going to have a family walk in the afternoon and by early evening I plan to be sipping an ice cold glass of Dom Perignon (very generously bought for me by my sister in law and her husband) and marking the end of the most challenging year I’ve ever had whilst also celebrating everything that I have to be grateful for in life…….and there is plenty!

When your hair starts to grow back it is actually quite exciting and if you’re not careful you can get a bit obsessed with checking its progress (especially in lockdown) which is pretty futile as it grows very slowly. Ironically, I’m sure every female, who is desperate for a haircut right now, disagrees with me but according to the internet it is only half an inch a month – yes, I checked before it even fell out!

I have moved through several different hair stages already. I started off as ‘Voldemort’ (thanks Max) and moved from there into a ‘Prince William’ stage, hair at the sides but very little on top. I am currently in the ‘concentration camp’ stage, very short with some patches thinner than others. I am hoping my next stage will be ‘Sinead O’Connor’ plus 20 years (there are plenty of grey hairs coming through too and I don’t remember her having any of those on the video of ‘Nothing Compares’). It is almost starting to look normal, but it did dawn on me the other day, as we were out for a family walk, that people may look at me now and instead of thinking ‘she must have cancer’ they are probably thinking ‘that’s a very severe lockdown haircut’.

Some of the new hair is still quite fluffy (which I find myself stroking whilst watching TV) because it’s brand new hair but as that gets longer I will have it cut so it comes through stronger. It doesn’t appear to be coming back curly or a different colour (except greyer) but I have heard that it can change as it grows so I’ll just have to wait and see.

Obviously, it is also growing in other places too, some of which I’m delighted about and others not so much. I am over the moon to have my nostril hairs back because this means my nose has finally stopped dripping – this was one of the most annoying side effects of hair loss. I’m not so delighted to have them back on my legs and arm pits which will obviously need shaving again. From an aesthetic point of view the most important hair growth for me was my eyebrows and eyelashes. It’s very difficult to look feminine without them and even though you can use make up in the day, you still look very bald at night when it all comes off.

Losing my hair as a result of cancer treatment has not been too traumatic for me but I can understand why it is for so many people. No matter how self-confident you are, or how little importance you attribute to appearance, there is no denying that as your hair falls away, so does your femininity. I got used to my new look pretty quickly but as time went on and my eyebrows and lashes all disappeared I got bored of looking like Voldemort, so it’s been lovely to feel my femininity reappearing with each new lash, brow or strand. There is still some way to go but the process has started and that feels good.

So that’s the positive.

The negative comes with the Tamoxifen, although it’s not all negative.

Tamoxifen is my insurance policy against cancer coming back. It basically blocks the estrogen receptors on breast cancer cells. It stops estrogen from connecting to the cancer calls and telling them to grow and divide, so it’s a pretty good drug from that point of view. Unfortunately, as all drugs do, it comes with side effects. As I’ve come to learn over the last 9 months, reading the lists of side effects for any drug makes for pretty depressing reading, so I’ve adopted the policy of ‘take the drug, remain positive and hope for the best’.

This morning I’ve just finished my first month of Tamoxifen. On the plus side I haven’t felt starving all the time (imagine how difficult that would be) and I haven’t got aching joints. I haven’t got headaches or nausea and as yet my weight hasn’t increased (although I do work pretty bloody hard against this). I don’t think I’m having any mood swings either (although probably best to ask someone in the family their opinion on that). I do occasionally feel a little irritable, or like my tolerance level may be reduced but to be honest given that I’m being treated for cancer, in the middle of a global pandemic and home schooling I’m not going to attribute that to the Tamoxifen.

However, I do get hot flushes and the biggest problem it is causing me is sleep disturbance. Since I’ve been taking it I don’t think I’ve had a full night’s sleep. I feel like the quality of sleep I am getting now is akin to having a new born baby but without the benefit of the lovely cuddles! Dave has referred to it as my thermostat being broken and he’s absolutely right. One minute my body is hot and clammy and the next it’s really cold. I tend to fall asleep easily but always wake about 2 hours afterwards and then the rest of my sleep is sporadic until I get up.

At the moment it is not affecting the way I feel during the day which is a Godsend, but I don’t know how long this will last. I am going to investigate some ways of trying to get myself into a deeper sleep to start with through either sleep meditation, hypnotherapy or acupuncture. Basically, I’ll keep trying different things in the hope that something will improve the current situation – any tips from any of you will be gratefully received.

To end on another positive note, I start my radiotherapy tomorrow. This is obstacle 11 out of 11, the final hurdle. I can’t wait to get started so that I can tick off every one of the 20 sessions I need knowing that when they are over my active treatment will be finished. All being well my last radiotherapy session will be July 14^th which will be exactly one week short of a year since I found the lump in Cornwall on July 21^st, 2019.

As I am writing this the rain is hammering on the window and it reminds me of a fitting quote I recently read:

 ‘Be strong now, because things will get better. It might be stormy now, but it can’t rain forever’.

The histology from my 3^rd operation was clear of cancer!

I was obviously delighted but, to be honest, had expected that result. As my whole body has effectively been ‘bleached with chemo’ it would have been a bit of a shocker (and worrying) if any cancer cells had been detected in the tissue they removed. It was still great to hear and I’m hoping that means that I am now cancer free (although this is only a presumption as I haven’t had a scan to confirm this).

Next stop is radiotherapy and I have a phone consultation with my oncologist this week when hopefully she will talk me through how it’s going to work and when it’s going to happen. It’s the last stop on this pretty long journey and I’m keen to get there.

On a different topic I thought I’d update you on my hair re-growth. It’s now been almost 2 months since the day I had my last chemo and for a couple of weeks after that date I still had eyebrows falling out. However, I can safely say that my hair is starting to return all over my body.

Starting with my head, it seems to be growing quickest at the sides (making me look a bit like a bald man). The first hair that comes through is light and fluffy and then it seems to thicken up as it grows. There are quite a lot of, what look like, white hairs (no surprise there I guess) but I’m also encouraged to see quite a few dark ones coming through too, at least I know I’m not completely grey just yet! It feels like it’s growing slowly but I think that’s only because I’m in lockdown with very few distractions and looking at it every day. I will wait until I have a decent amount all over and then take the clippers to it so that it is at least even in length. I’m also told that cutting it (which feels counterintuitive) will help it grow better and thicker in the long run. Everyone always says to me that it may come back curly, but I can’t see any signs of that at the moment.

Other exciting news is that I have the beginnings of new eyebrows. By the end of March, they had all completely fallen out which left my whole eye area looking very bald without make-up. For ages I kept applying the eyebrow serum and they just weren’t appearing and then suddenly I saw new growth and since then it has developed pretty quickly. Right now, I would say you can see definite shadows above my eyes where the hairs are coming through.

I also have tiny new eyelashes on the top and bottom of each eye, which I can only see in my magnified mirror, but they are already giving my eyes a bit of colour which they really needed. It’s surprising just how bare and odd your eyes look with no hair and no make-up. As Max (my eldest son) confirmed I did have a bit of a look of Lord Voldemort (for any non-Harry Potter fans, look him up – he’s scary looking).

The very fine hairs in my nose must also be making an appearance as I’m pleased to report it’s no longer dripping anywhere near as much as it was (which is always good during a global pandemic). The lack of hair in my nose was probably the most annoying hair loss as I literally had to have a tissue with me at all times otherwise my nose would run onto my face or the floor (much to my kids’ amusement).

Finally, I have seen the emergence of the one annoying hair that resides on my top lip – well I guess you can’t have the good without the bad. I’m sure my legs and arm pits will be next.

So, the final thing to talk about is Tamoxifen which is another weapon in my armory for the fight against The Breast Cancer Beast returning. My particular type of breast cancer is hormone receptive which basically means that the estrogen in my body feeds the cancer cells and helps them to grow. Tamoxifen is known as a selective estrogen receptor modulator (SERM) and it blocks estrogen in the body – great for fighting cancer, not so great for lots of other things.

Estrogen develops and maintains the reproductive system (not so vital for me now), it contributes to cognitive health (definitely still need that), the strength of your bones (yes please) and the function of your cardiovascular system (crucial) as well as other bodily processes. So, as you can see, stripping it out of my body for the fight against cancer potentially comes at a huge cost. I guess you can’t have it all.

I was told I could take my Tamoxifen 2 weeks after my operation (it can also increase the chance of blood clots) which was technically a couple of weeks ago now. The box has been sitting on my kitchen worktop staring at me for some time and I have been putting off taking it.

Post chemo I am already having symptom of the menopause. My periods stopped 5 months ago, I get regular flushes and very disturbed sleep, so I suspect my estrogen levels have already dropped from my pre-cancer days. Having said that, I can cope with all of that at the moment and feel pretty good, but after reading another of the ‘booklets of doom’ from the breast care nurses on menopause/Tamoxifen I suspect things will get worse once I start taking the tablets.

My coping levels during treatment for cancer have been pretty robust to date and I put that down to the fact that I knew, however bad things got, it would come to an end and I could move on. Unfortunately, I know once I start taking Tamoxifen what ever joys it brings with it, I’m stuck with….…for years. I have been reluctant to take that step knowing I can’t really come back from it.

But, this journey has had lots of unpleasant things to deal with along the way and so far, I’ve done pretty well at coping with whatever has been thrown at me. So, today, I have put on my positive pants and taken the plunge. Half a tablet of my daily dose is working its way into my bloodstream as I type and the other half will be taken tonight before bed.

If I want to have the absolute best chance of this cancer not returning (and I do for my family’s sake as well as my own) I need to embrace my Tamoxifen (or Tamoxibollocks as I affectionately call it – stolen from a book I read) and deal with the consequences in whatever way I need to.

For now, I am going to let the magic happen and rest assured, I will report back.

I was always due a third operation about 4-6 weeks after my chemo had finished.

My surgeon hadn’t managed to get clear margins on my 3^rd tumour during my 2^nd operation but we decided not to do any more surgery until after chemotherapy. This was mainly because during my chemo I had my BRCA gene test which, had it come back positive, I would have needed a double mastectomy. My surgeon and I agreed that we would wait until after this test to see if I was facing a double mastectomy or just another ‘shave’ to obtain clear margins. Thankfully the BRCA gene test was negative so it was the latter.

As my final chemo session was the Friday before lockdown I wasn’t sure whether my operation would be delayed or would go ahead as planned. To my great relief my case was discussed at the multi-disciplinary team meeting and they decided to go ahead. The breast care team had moved from Warwick Hospital (which was classed as a ‘red site’ due to having COVID-19 cases) to Nuffield Private Hospital in Leamington which was classed as a ‘green site’ i.e. COVID-19 free. I was invited to go into the hospital for a consultation with the surgeon and to have all of my pre-op tests.

I went to Nuffield for the first time on Thursday 16^th April and I have to say after 27 days of not going anywhere I was both apprehensive and excited to be out. I needn’t have been apprehensive as they were very vigilant where Corona Virus was concerned. They checked my temperature before I was allowed through the door, had lots of social distancing measures in place and also wore full personal protection equipment (PPE).

During that visit I chatted with my lovely surgeon, completed a full pre-op booklet on my previous medical history and had an MRSA swab, a blood test and an ECG. I was told I would need a COVID- 19 test before surgery but that this would need to be done at Warwick.

On the following Monday 20^th I went to outpatients for my COVID-19 test. It was a very quick visit and again as safe as it could possibly be, although the test itself wasn’t too pleasant. The nurse had to stick a swab up both my nostrils (which just tickled and made my eyes water0 but then she also had to stick a swab down my throat. She kept apologising because she had to poke it far enough down to make me gag. I told her there was no need to apologise, she was just doing her job and to be fair I’d experienced much worse over the last 7 months.

My test must have been negative because I wasn’t stood down from my surgery.

I was told I needed to be at the hospital for 7.30am and the list started at 8.30am. Dave could drop me off at the door but that was it, after that I was on my own. It did feel a little strange being dropped off at the door knowing that you were having a general anaesthetic and that none of your family members would be there when (and if) you came round. I just put that thought to one side. I told myself I wouldn’t even know if I didn’t wake up!

As usual, I was exceptionally well cared for by every member of staff I came into contact with. Unfortunately, the full PPE meant that you couldn’t see people’s full faces which made it a little harder to connect with them but was totally necessary under the circumstances.

I was shown to my own private en-suite room and the first hour was spent with the nurse doing administration and taking a urine sample from me. I was also visited by the anaesthetist and we discussed ideally putting the intravenous tube for the anaesthetic into my foot instead of my arm (due to the fact I have no lymph nodes in either arm anymore). He was great and said he would do his best to accommodate my wish.

At around 8.45am I walked to the theatre with my nurse. I was met by the 2 anaesthetists who said they would be putting me to sleep directly in the theatre as opposed to the anaesthetic room (this was something to do with equipment going to Warwick for Covid patients). It took them 3 attempts to get the intravenous tube into my foot but thankfully they managed it.

The next thing I remember I was waking up in the recovery room with a lovely nurse who was looking after me. Before I have felt a little queasy waking up, but I didn’t this time (that came later) and before I knew it I was being wheeled back to my private room, I think it was about 10.50am by then. The nurse looking after me fetched me some water but left me for a while before bringing me my lunch.

Whilst I was lay there, my blood pressure was being taken on my arm automatically about every 20 minute and I also had 2 cuffs on both legs that kept inflating and deflating (annoyingly) every 15 seconds. I had no idea what they were at the time (I didn’t have them at Warwick) but have since found out they are Intermittent pneumatic compression (IPC) devices used to reduce the chance of blood clots after surgery.

I was brought a lovely lunch and got out of my bed to sit by the window to eat it. I was visited by the anaesthetist who came to wish me well before he left (how nice is that?) and the nurse who had been looking after me finished at 3pm and she also came to say good bye.

A wave of nausea passed over me around 2.30pm which I hadn’t experience before with anaesthetic, but I managed not to be sick and finally was able to leave around 3.30pm. I had called Dave and he and the boys drove to pick me up and waited outside the door for me. It was so lovely to see them all in the car waiting to take me home.

Unfortunately, after the car journey home another wave of nausea came and this time it didn’t pass and I was sick just the once but, a bit like when you’re drunk, I felt much better afterwards.

I was absolutely fine for the rest of the evening and any pain was being well managed with just paracetamol and ibuprofen.

All in all, the whole experience ran very smoothly and, as always, I received exceptional care. Whilst it was lovely to be in my own room and choose my own lunch etc (all the trimmings of a private hospital) I was a bit lonely and bored all afternoon if I’m honest as I couldn’t have any one with me. Having said that I was just really grateful that my treatment could continue, there was a safe hospital for me to have my operation and that I could overcome hurdle 10 of 11.

Fingers crossed when the histology comes back from the sample, there are no cancer cells present.

What can I say about the current situation we all find ourselves in?

It’s unprecedented, shocking and frightening for every single one of us, even more so if you are either working as a key worker, trying to fight this nasty virus or classed as ‘an extremely clinically vulnerable person’ (yes sadly I have the NHS letter labelling me as just that – not really a label I’m happy about).

I was lucky (if you can describe it that way) to have chemo number 6 (my last one) on the exact day that the schools closed and lockdown was announced a few days later. If I’m honest though, initially I didn’t feel lucky, I felt really cross about the whole thing. To me getting to the end of 18 weeks of chemo felt like a milestone in my treatment and something that was worthy of a small celebration – that opportunity had been taken away from me. Not only could I not have anyone with me for my last session but I couldn’t go for lunch or dinner with my family or friends to mark the occasion. On top of that I was facing a further 12 weeks of isolation and a possible delay to the remainder of my treatment. I was grumpy to say the least. Surprisingly, I hadn’t experienced much anger at all since my diagnosis but I did feel really pissed off with the Corona Virus and the ramifications it had on me personally.

I’m pleased to be able to report that the anger passed pretty quickly (I’m not really a person who stays cross for long) and it did make me reflect on why I felt so cross. I concluded that firstly, it was because as I approached my last chemo I had seen a light at the end of the tunnel which I felt had been extinguished. I only had 2 more obstacles to go and treatment would be finished, I could start getting back to normal and making plans for fun things instead of my life being full of constant hospital visits. Due to the virus the timeline of my remaining treatment was unknown.

Secondly, I realised very quickly that it was social interaction that had kept me going throughout my chemo. Seeing friends for coffee, lunch, or a walk between treatments had kept me smiling, focusing on the positive and not spending too long dwelling on things that shouldn’t be dwelled upon. This became even more apparent in the first week of lockdown when I felt pretty miserable about all of the niggly side effects that hadn’t previously bothered me. I realised that social interaction was a great distraction and without it, I had too much time to feel sorry for myself.

I accepted the fact that I will be isolated for 12 weeks pretty quickly (there is no point in fighting something outside of your control) and as the situation has become more grave over the last few weeks I am acutely aware that it is much worse for others than it is for me (as is always the case in life if you have the capacity to be objective). All those key workers going into work every day putting themselves and their families at risk so that we can eat, be treated and cared for are truly amazing and very brave.

When I stop and think about it, I still can’t quite believe that pretty much the whole world has stopped in its tracks and no one really knows for how long. As a ‘clinically vulnerable person’ it does scare me and I’m not one to scare easily or worry unnecessarily. I know I need to follow the rules (which I do) and maybe that’s why I’ve adapted quickly to lockdown. To be honest though, I’ve been constantly adapting my life for the last 6 months, I was no longer going out at night or drinking. I joked I was like an OAP – spending my time between, home, going out for lunch and the hospital – so lockdown was just a further extension of that for me.

It’s been interesting to see different people’s reactions to our current situation and also their willingness/ability to adapt. My boys seemed to have got used to the new ‘norm’ without too much of a struggle. Dave is finding it a bit more difficult. He’s been working from home alone for the last 6 months and I think continuing to do this but without the ability to get away from the same four walls (or faces) is bothering him. I keep reminding him that it’s easier to just go with what you can’t control rather than fighting it – God knows I’ve needed to learn that lesson over the last 6 months.

What is interesting about this lockdown situation is that almost everybody will experience it differently. There are so many factors that will contribute to an individual’s experience of it – their job, finances, living arrangements, relationship with their partner/children, their physical and mental health and their wider family members to name but a few. For that reason, it is almost impossible to predict the long-term effects this lockdown will have on us because what’s ok for one person will not be ok for another.

Having said all of that, there are always positives in every dark situation and I’ve already seen plenty. I’ve been amazed at how communities have rallied to look after their own – it’s heart-warming. I have also been impressed with the agility of the corporate world – from how quickly the large supermarkets have adapted their ways of working to how manufacturers have started making ventilators, masks and all sorts needed on the frontline.

It’s also great to see people talking to one another again instead of texting/messaging or PMing. Facetime and Zoom have come into their own and whilst digital interaction is not the same as human interaction, at times like this it comes a close second. Seeing people’s faces and expressions is better than just hearing their voices.

So, as we are about enter week 5 of lockdown, I am pleased to be able to say ‘I’m doing ok’ and whoever is reading this, I genuinely hope you are too. Friends who talk to me often say ‘I shouldn’t moan you’re in a much worse position than me’ but I always assure them that they are entitled to feel aggrieved, fed up, angry, sad, scared, whatever. Their lives have been disrupted (as has mine) and whatever anyone feels is genuine and always worthy of acknowledgement. The key then is to try and get yourself talked back into a positive place if possible.

There is good news on my treatment front too. My next (and hopefully last) operation (the 2^nd attempt to get clear margins on my 3^rd tumour) is this coming Thursday 23^rd April. Surgery has moved from Warwick Hospital, which has cases of Covid-19, to the Nuffield Hospital in Leamington. Providing all my tests (Blood, MRSA, Covid-19 and ECG) come back normal it will go ahead and I should only be in for half a day. I will then need to wait 8 weeks for the tissue to heal before they can start my radiotherapy. This means that for me, my treatment is on track at the moment which I am so grateful for.

Well it seems I have wittered on in this post more than any previous ones. It’s probably because I feel like I’m talking to you all – it’s clear I’m desperately missing my social interaction. I hope you and your loved ones are safe and well and if you are reading this and working as a key worker in any field then ‘thank you’ from me.

Stay safe and I’ll be back after the op.

It’s scary just how quickly life can change – Dave and I experienced this back on September 16^th last year when we heard those 15 fateful words ‘we have your test results Mrs Blackwood and we have detected cancer in both breasts’, but I didn’t expect to experience another major life change quite so soon.

I’m writing this post in a very different climate to the last post I wrote only 3 weeks ago and before I reflect on the current situation I am going to update you on my last chemo session.

I am so pleased to be able to report that it took place as planned on Friday 20^th March. This time my liver was behaving itself and my enzymes had dropped to just above normal which was fantastic news for me. I had been so desperate for my final chemo not to be delayed that I had googled ‘foods to help detox the liver’ and as a result had been eating copious amounts of kale (it’s actually alright) grapefruits, oranges and drinking hot water and lemon and avoiding meat where possible. I’d love to think this had helped, maybe it did, maybe it made no difference, but either way the end result was what I wanted.

Sadly, I couldn’t take anyone with me for my final session, totally understandable in the current climate, but still, a real shame. When it’s your last one it feels quite momentous. It’s not only the beginning of the end of an 18-week journey but it is also another obstacle ticked off the list. One step closer to the end of treatment. Probably more importantly, it’s the last time you have to sit there knowing you are being pumped with poison. Psychologically it’s massive. I had planned to take my good friend Heidi (who has been to 3 of the 5 already) and both of us were gutted, especially as at the last one we were laughing so much I kept kinking the IV line and the machine kept beeping.

Dave dropped me off at the door and in I went. I had baked ‘Millionaires Shortbreads’ for the nurses, they had recently discovered my love of baking and appreciated any ‘donations’. For me, I love baking and if I could help give them a little lift with a cuppa when they needed it, it was the least I could do. The session passed without any problems and I was sat with the men on the ‘prostate cancer’ side so got chatting to a couple of them and made the most of the situation. I also Face Timed Heidi so she felt involved too!

When the Docetaxel (the Domestos of Chemotherapy as my oncologist refers to it) was all in, the nurse said she could remove my PICC line. It had been in place since December 5^th, so I was very excited for it to come out and no longer have to shower with a plastic sleeve on or be careful about knocking it.  She pulled the thin wire out in a few seconds but there was a small plastic device just against the skin which had two small metal hooks that were just inside the arm holding things in place. She needed to jiggle this about to get it out which resulted in a couple of deep breaths (and quite a lot of blood) but nothing more. Just like that it was gone, and it felt great to have my arm free again.

I had bought the nurses a couple of boxes of ‘Hotel Chocolat’ chocolates (my personal favourite because they feel decadent) as a thank you. I have been visiting the unit for 15 weeks, (and will still need to go back) sometimes once a week sometimes up to 3 times a week. Every time the nurses are smiling, chatty, friendly, supportive and basically just ‘angels on legs’. They deserved a thank you at the very least. As I handed them over I found myself overwhelmed with emotion and had a little cry. As one of the nurses hugged me I said to her ‘I don’t know why I’m crying, it’s a happy moment’ and she assured me lots of people feel the same on their last session. It even makes me feel emotional writing about it now.

As I walked out of the double doors of the unit Dave was waiting for me, we had a massive hug and we both had more tears. He clearly felt overwhelmed with emotion too.

I would have loved to have gone out for lunch with Heidi or dinner with my family to mark the occasion but the current COVID 19 situation didn’t allow for this. Instead Heidi came and sat in my garden (in the cold) and chatted to me through the kitchen door – there’s true friendship right there.

So, as I write this I am a week on from that final chemo and again I’m so pleased to be able to say it’s been ok. I’ve not had any side effects that have knocked me off my feet or made me feel rotten just lots of little annoying ones that are a bit miserable. I’ve had flushing in the face, sore eyes, sore nails, tiredness, constipation and my taste has all changed again. If I’m honest it’s the change in taste that I find hardest to deal with because everything you eat, or drink just tastes weird and basically just makes life a bit joyless.  

Earlier in the week I also had lots of hot flushes in the evening and through the night and was struggling to sleep as a result, but they seem to have worn off as the drugs leave my system. I know they’ll be back with vengeance when I start taking the Tamoxifen, but I’ll cross that bridge when I come to it.

I’m feeling pretty much back to normal now (except for my taste which may take a while to come back…oh and the constipation) and I just keep thinking that every day that passes the drugs will be leaving my system for good and my body can hopefully start to recover. My liver enzymes can return to normal and the orange hue under every one of my fingernails can start to grow out. My eyelashes can grow again (I have tiny miniscule ones appearing already) and my eyebrows can also grow back. My hair is already starting to reappear, I have some very short, fluffy hairs already some of which are dark but most of which (I’m mortified to admit) are white!! Max said to me just today, ‘I like your new hair Mum, except it looks a bit like a dog that’s been neglected’ – I think there was meant to be a compliment in there somewhere!

In this current, scary climate in which Covid-19 seems to be raging I am so grateful to have finished my chemotherapy. I couldn’t have cut if finer if I’d tried. My last one fell on the day the schools closed, but at least it’s done. I hear some people’s chemo might be delayed and that would be really hard to deal with psychologically and I really feel for those people.

Which brings me onto Covid -19 – I had meant to comment on it in this blog but as usual I have wittered on for too long about my final chemo. So, I will post this blog and write another in the next few days about my thoughts on the current situation and how it is affecting me personally. After all, I have plenty of time on my hands and nowhere to go!

Until the next blog, stay home and stay safe.

It’s been a while since I’ve blogged and quite a lot has changed with me but more importantly across the world!

First of all, we had a lovely few days away in The Lakes over half term. It was wet, very wet (as The Lake District often is) but it felt so good to be somewhere different and out in the fresh air. We managed to get out for a walk every day between showers and had a couple of meals out too. It did all of us some good to have a change of scenery and for me it was great not to have to go to hospital for a whole week! I also had a surprise visit from two fab friends who drove over from Northumberland specially to see me which made my week!

I had chemo 5 the week after we got back from The Lakes on Friday 28^th February. I was still a little nervous about it being administered as there was a risk of an anaphylactic shock but thankfully all was fine. Weird as it may seem, my friend and I had a great catch up for the 2 hours we were in the unit and were laughing so much that my tube kept moving, affecting the flow of fluid and causing the machine to beep! However, the nurses weren’t bothered and were encouraging us to keep laughing.

I felt absolutely fine afterwards, so much so that we went out for lunch and continued the positive vibe.

In terms of side effects this round was slightly different to the one before, but certainly no worse. I had the usual flushing in the face 24 hours afterwards and started to feel tried around Monday, Tuesday, but I didn’t feel wiped out and need the afternoon on the settee like I did last round. My eyes were sore in their sockets again and my sleep seems to have been more disturbed this time. I experienced more hot flushes at night which meant that I was only having a few hours of solid sleep. We have moved from the winter quilt to the summer one now which seems to have helped with this a little. My taste was also awful around a week after treatment which meant I really didn’t want to eat anything because everything tasted weird. Whilst it has improved a bit in week 2, it hasn’t returned to normal and I don’t think it will until the chemo is all over and out of my system.

I also have less hair than ever (if that’s even possible). My eyelashes have pretty much all fallen out (I think I have one left on my right eye) and my eyebrows are very patchy and thin on ground now. This has forced me to 1) watch some make up videos on You Tube and 2) learn some new make up techniques. It’s like chemo keeps challenging you to see just how hard you’re prepared to work to look feminine. Without make-up my eyes look very bald and I strongly resemble Dr Evil from Austin Powers (incidentally I went to a fancy dress as him just last weekend) so some effort is required each day to look as ‘normal’ as possible.

I also contracted a UTI about 10 days after my treatment (something I’ve had before but years ago) and I’m not sure if it was an unhappy coincidence or related to the treatment. Either way I needed a 3-day course of anti-biotics to get rid of it. For anyone reading this that has suffered from them before they will understand why I was like a junkie tearing into the medication as soon as I left the pharmacy. It’s all cleared up now thankfully.

Whilst all of the above side effects aren’t particularly pleasant, they aren’t awful either. I’m acutely aware that I could have had tingling hands and feet, a mouth full of ulcers and been totally lacking in energy so I’m grateful to have felt pretty good on the whole.

I have my last round a week today (March 20^th) and I am literally counting down the days. With everything going on around the world with the Coronavirus I am desperate to get my last session done so that my immune system can start to build back up again.

Unfortunately, at the moment I would be classed as one of those vulnerable people with an underlying condition who could die from contracting it. I’m not normally a worrier or panicked but I’ll admit I am worried about picking up the virus and feel as though I’m wishing my life away so that I can get through round 6 and start to build up my immunity again.

Whilst I’m not self-isolating, I am what they call ‘social distancing’. I am trying not to go anywhere with lot of people and won’t really be going to any social events at all. My life will consist of hospital appointments and coffees one on one. It’s most definitely the right course of action for me but I will miss regular and varied social interaction as I really believe it’s played a large part in getting me through the last 4 months.

I have briefed the boys not to share water bottles or food at school and to wash and sanitise their hands as soon as they get in. This is my attempt to keep them from bringing the virus in to our home. However, I am aware this may not be enough and so as a final measure I have stopped kissing them on their faces until my immunity has built back up again – it is this measure that hurts the most.

On a positive note, it was our 15th wedding anniversary yesterday so we had lunch out to celebrate (probably the first one I’ve celebrated without an alcoholic drink). Whilst the last 6 months, or the up coming 6 months could not be classed as our happiest together for obvious reasons, we are together and we are happy and that is worth celebrating. The ‘in sickness and in health’ part of our wedding vows has certainly been in play recently and I couldn’t have wished for a better person to have been by my side than Dave.

Stay safe my friends and look after those you love (and those who are vulnerable) through these tricky times.

It’s Valentine’s day! I know it’s a load of commercial clap trap really, but I must confess I quite like it. Married to a lovely Northern Irish man, who isn’t known for expressing his feelings at will, it provides at least one occasion a year for sentimentality and he did well this year. A heartfelt message, a lovely pair of dangly earrings (crucial to complement a bald head) and an M&S meal for 2, what more could a girl want? (I’m not even being sarcastic) it’s shaping up to be a good Friday.

My card to him said the following on the front:

because of you
I laugh a little harder
cry a little less
and smile a lot more

Never are these words truer than this year. During some of the bleaker moments when we have received fairly dreadful news Dave has always made me laugh, often dark humour but something that eases the tension and makes me smile. It’s only when ‘the shit hits the fan’ in life that we tend to find out just how useful our partners are so if you think you’ve got a good one – my advice is to spoil them today/tonight because you never know when you will need them to step up.

Anyway, enough of that and onto the infamous Docetaxel, my other partner in life for the next 8 weeks.

Well I’m a week in from my first dose of it and it’s been OK. The nurses were right, I have felt like I’m on chemotherapy with this one but I’m pleased to be able to say nothing has been too horrendous (yet). I had my usual flushing in the face for 24 hours after but still felt fine. On the Monday I was in the gym on the stair master but then Tuesday was a completely different story. I felt very lacking in energy and although I made it out for a coffee in the morning, I hardly moved from the settee for the rest of the day and night. I felt a little flu like, tired, cold, wiped out and generally a bit miserable. By Wednesday I had a little more energy, but not back to normal, and managed to get out in the afternoon to meet friends. By the evening I was shattered again. Thursday was slightly better again on the energy front but by the afternoon, early evening I’m good for nothing really.

Along with fatigue I have had a series of annoying side effects. My taste has all gone to pot. I can still taste some things but they all have a kind of metal overtone. My throat has been sore and my mouth is permanently quite dry so any pleasure derived from food or drink is starting to wane rapidly. On the plus side I might actually shift my Christmas weight before the end of February!

My stomach has also felt really tender. The only way I can describe it is that it feels like it does after you have drank too much and been sick from alcohol (something I’ve only experieced a couple of times obvs).

I have to take Laxidose twice a day and I’ll leave that there – I don’t think any of you need to know any more about my bowels.

Finally, my eyes have been sore in their sockets. Not constantly sore, but if you rub them, they have felt dry and tender.

Whilst none of the above are that pleasant, I’m acutely aware that they are not horrendous either and that things could be worse. I know this drug can cause tingling in the hands and feet and muscle/joint pain which I’ve escaped so far (fingers crossed that continues). So, all in all, I’m not complaining. I am thinking that by the end of the weekend I will be 10 days post treatment and technically should be building my self back up for number 5.

We are off to The Lakes for half term and I’m really looking forward to it. I am ready for a change of scenery and to (hopefully) not have to step into a hospital for a full week! It will also do the boys some good to feel like we are on holiday and things are as normal as possible. Here’s hoping we have some dry weather and can get out in the fresh air.

Hope you all have a lovely Valentine’s Day if it’s your thing and if it’s not just have a great weekend/half term.

As a patient going through cancer treatment I was invited to attend a workshop run by www.lookgoodfeelbetter.co.uk (LGFB)

Taken straight from their website: ‘Look Good Feel Better is dedicated to improving the quality of life and self-esteem of people undergoing cancer treatment. The program offers complimentary group and virtual sessions that teach beauty techniques to help people with cancer to face their diagnosis with greater confidence’. It is a charity supported by the beauty industry.

With my hair already gone and a strong likelihood that my eyebrows and lashes would follow, I thought I’d better get myself booked on – make up has never been my strong point and whilst I’m totally comfortable with my baldness, I do need a little make up to look feminine and not just like Duncan Goodhew (I’m showing my age here).

So, I attended one of these workshops a couple of Mondays ago and I have to say it was fantastic. It was held in Coventry at an industrial unit where they run training courses for the beauty industry and they were lending LGFB a free room to run the workshop.

There were about 12 ladies on this course (they do run them for men and teenagers with cancer too) and what struck me immediately was the diversity in the room – cancer really is indiscriminate. There were ladies of different ages, culture, and we were all at different stages of our treatment. Some still had their hair; some were wearing wigs (I’m pretty good at spotting them now) and I went totally bald. A lady older than me also revealed a bald head when she took off her hat and looked so relieved to see me in the same situation that she came to sit next to me.

We were sat at treatment desks each with a mirror on them, one side normal and one side with massive magnification so that we could see what we were doing with the make-up.

The two ladies running the course introduced themselves and told us all about LGFB and then said they would be taking us through a 12-step programme. Every part of me wanted to say, ‘My name is Karen and I have cancer’ (just like the AA) but thought it may not be appreciated so I managed to keep schtum.

Immediately as we sat down, we were handed a lovely goody bag with amazing products donated by the beauty industry from companies such as Estee Lauder, Chanel, No 7, Bobbi Brown to name a few. Inside the bag was everything we needed to follow the 12 steps of the programme so we could start using our own products.

The first thing we did was to remove ay make up we had arrived in with the products from the bag. As we did this the lady next to me (with the bald head) broke down in tears as she looked at herself in the mirror and removed her make up. I don’t think she had ever reconciled her new image and it struck me at that moment, just how much an individual’s self esteem can be affected by their appearance.

The course leaders then took us, step by step, through a skin care routine, then gave us tips on foundations, powder, blushers, eye shadows, eyeliner, and probably most importantly eyebrows. These days it’s all about the eyebrows so if they disappear it’s crucial to know how to recreate them, it’s not as easy as you’d think, but they do have some great tips to follow.

The workshop lasted about 2 hours and there was a lovely volunteer who made us cups of tea whilst we were doing it. For me it was just another example of how much support is out there for cancer patients and how lucky we are that we can access these kinds of things for free, making them available for everyone.

Cancer treatment is long and tough. You go through physical and psychological changes that are forced upon you, beyond your control and that you have to adapt to quickly.

Courses like LGFB help with those adaptations and I, for one, was really grateful for that support.

In other news, last Friday was chemotherapy number 4, which means that I am now officially 2/3 of the way through my chemo doses, which feels good – I have less to do than I have already done!

I have moved onto a new drug now – Docetaxel – which is supposed to be one of the nasty ones. Understandably, I was apprehensive last Friday, I had been told that it is possible that your body can react to the drugs as they go in and that the most severe reaction was anaphylaxis. I’m pleased to be able to report that I didn’t suffer a reaction and at the moment 3 days on, I’m feeling fine (although sadly my taste buds are starting to change, which may actually stop me eating chocolate!).

I have no idea what the next few days will bring but fingers crossed it will be more of the same!