Anniversaries

It’s a couple of months since my last blog post, and life is feeling more normal. Which in a weird way brings in to sharper focus what an unbelievable year it has been. As I get physically stronger day by day, week by week (although not as quickly as I’d like), I think my brain realises “hey, now’s the time to process all the crap this year has thrown at you!”. Also, it’ll be a year ago next week that I went to see my GP about my boob feeling weird, in blissful ignorance of the tumour inside me.

There are moments when I will get lost in something, and completely forget that I have had cancer. Then I remember, and it all feels surreal all over again. I need to pinch myself. Did this really all happen? I imagine it must be what bereavement feels like, and it’s all part of the process of change and acceptance.

Then there’s dealing with the fear of recurrence. 70% of breast cancers never return. But, in the dark moments, my brain takes me to a place where I’m in the 30%. That’s something I have to learn to live with. I don’t feel fearful, but I know I think about the future in a very different way to how I did before cancer. And I do not want fear to orchestrate my life and my decisions.

My view of my future has changed, and this is challenging to deal with. For instance, during chemotherapy, a letter arrived from my building society offering me new mortgage deals as my current deal was due to end. There is another 18 years on my mortgage, which until I was diagnosed with cancer I naively assumed I’d be around for. Opening that letter was a punch in the chest. I can no longer assume I’ll be around to pay off that mortgage. Now, I know none of us knows how long our lives will be, but a cancer diagnosis puts your mortality right in front of you and you can’t ignore it. Some days it’s right in your face and you can’t see around it. Other days it recedes and glimmers of hope and future plans come in to view.

I really want to get my MRI and mammogram in January done and dusted. That’s the next big milestone. Once they’re done, and hopefully everything is all clear, then I can start to think about 2018.

The wonderful Macmillan team at the Whittington have referred me to their clinical psychologist for counselling, something I know will be really helpful.

Blimey, think I’d better lighten this up a bit….

 

Add Aspirin trial

Having had a successful 8 week test of taking aspirin, I am now in the trial proper. I saw my oncologist a couple of weeks ago, and all was ok to go ahead. I’ve been given a card to carry with the trial details, so if I need medical care for something like a heart attack (oh, how I’d laugh!), the medics can find out if I’m on aspirin or the placebo.

A blood test was needed. So, off I go to get my deli counter ticket. The phlebotomist called me in, and I explained that my veins are quite hard to find because of chemo damage. She gave me one of those  patronising “You don’t know what you’re talking about” looks. So, she puts a tourniquet around your arm, slaps my veins, looks at them and says “oh dear”.

She ended up taking the blood from a vein over my knuckle. That was comfortable.

IMG_1466

Keep Glowing

My hot flushes have lessened with a combination of acupuncture, and me learning how to manage them. But they’re still pretty unpleasant and tiring, especially the accompanying nausea.

I’ve bought a rechargeable fan which I use at home. Only a tenner, and worth every penny.

IMG_0877

Hair, back with a vengeance

My eyelashes are long enough (just) for mascara. Hallelujah!

My head hair is coming back thick, curly and rather deranged. But I’m not bald anymore, so that’s ok.

IMG_1478

Crop circle anyone?

After washing my hair, I’ve always piled it on my head and wrapped it in a towel whilst it dries. For years, I’ve flicked my head back when I take the towel off, to flick back my long hair. Out of habit, I still flick my head back. Nothing happens now, my hair is too short to flick.  And sometimes that gives me a flashback to the trauma of my hair loss. I never know when these painful reminders will come.

All my other body hair is growing at the rate of knots. I now realise just how much time us women spend plucking, shaving and waxing, having not done it for 8 months. At least it’s black opaque tight season….

I have a permanently half bald armpit. The radiotherapy killed off the hair follicles. Hopefully it did the same for any lingering cancer cells.

IMG_1471

Armpit now half bald. And that’s the scar from lymph node removal.

Work

It really feels like I am getting back in to the groove now. I’m hugely frustrated by my fatigue, but chemo brain is diminishing. Last week I presented to 150 people, so can’t be bad.

I’ve bumped in to a number of work acquaintances who I haven’t seen since I’ve been off work, and it’s genuinely touching that they are so pleased to see me and to know I’m ok. At least once a day I find my eyes pricking with tears (in a good way).

However, this young lady is not happy that I am back at work, and not at home for constant cuddles….

IMG_1308

Hi ho, hi ho, it’s off to work I go!

I’m in the second week of my phased return to work. The plan is to gradually build up the hours and days, until, hopefully, I am back to full time working in January. I am working for about 5 hours a day, which means I can miss rush hour travel too.

It is great to be back at work for a couple of reasons. Firstly, just being around my team and colleagues is energising and motivating, and it’s lovely to catch up on everyone’s news. Secondly, it will be great to feel a sense of achievement again. This may take some time as at the moment I feel about as useful as a chocolate teapot. I definitely still have chemobrain, but I’m hoping at some point I’ll return to being able to perform as I once did. I can see already I’m going to get frustrated when fatigue and chemobrain stop me doing what I want to. I do need to manage my energy levels. After my first four hour day, I came home and slept for two hours solid on the sofa, then managed another nine hours sleep that night. Which leads me on to….

Sleep

This is my new pastime, it seems I need about nine hours a night. I used to be one of those annoying people that bounces out of bed at 6am full of beans and ready to go. Now it’s more like 8am and it’s a squinting, slow shuffle out of bed rather than anything bouncy.

It is odd, and frustrating, to have to plan my days based on what my energy levels will allow. Never before has that been a consideration. I had some great advice in terms of combating fatigue. If you feel like it’s going to be a good day, do 50% less than you think you can, and on a bad day, do 25% more. In that way, your energy levels and resilience gradually increase.

Holiday

Before returning to work, I took a week’s holiday to my personal paradise, St Lucia. It’s been a year since I had a holiday, and I desperately needed a change of scene, and to be by the sea and in the sunshine.

I know that seems like a long way to go for someone with fatigue, but I’ve been there a number of times, so I knew exactly what to expect, which made the holiday stress free. Everyday I had a treatment, such as massage, and I practised yoga, meditation and some exercise classes. It was exactly what I needed. Plus wonderful, fresh, healthy food.

I also slept. A lot. Every night I was tucked up and asleep by 9pm. What a party animal I am these days! I’m not drinking alcohol now, so staying in the bar is a bit pointless, and I just couldn’t stay awake.

As I’ve just finished treatment, my skin is more sensitive than normal, so I was under strict instructions to keep covered up in the sun. Also, the area of skin treated with radiotherapy needs to be protected with SPF30 for the rest of my life. So, I stayed a very pale hue all week. Combined with my very short hair, and lack of eyelashes, I’ve never felt so unattractive on a beach holiday. On the plus side, it’s the first holiday I haven’t needed a waxing appointment for.

IMG_0836

There was a crucial turning point in my recovery whilst I was on holiday. It wasn’t a conscious decision, but with the exception of the therapists who needed to know I’ve had breast cancer, I did not tell anyone I met that I’ve had cancer. In the past nine months I have met so many amazing people, such as doctors, nurses, charity workers, therapists, who have helped me through treatment. I’ve also been reunited with so many friends from years and decades gone by, which has been truly wonderful. But in every instance, these encounters have come about because I have cancer. I was in danger of being defined by my cancer. My experience of cancer is now a huge part of me, and is changing me in ways I am still understanding. But I’m still Alison. And on holiday, that’s who I was. Alison. Not “the woman who’s just finished her treatment for breast cancer”.

Moving Forward

So, some big achievements with getting back to work and going on holiday. I’m half way through a fantastic course provided by Breast Cancer Care, Moving Forward. They are run all over the country, and are totally free of charge.

I also read this book, and I can’t recommend it highly enough. It is full of practical advice and exercises to complete which help you with managing issues such as grief, anger and depression.

IMG_0866

My mood, overall, is much better than it was through treatment. But I know I need to actively manage my emotional wellbeing to ensure I rebuild my resilience. Part of this is acknowledging, and processing, all the dreadful emotions and experiences that a cancer diagnosis throws at you. It’s great to be positive, but not at the expense of being honest with how you feel. So, that’s what I’m working on now, and charities such as The Haven, Macmillan and Breast Cancer Care all really help with this.

If you want to know more about the aftermath, this is a great article:

After The Treatment Finishes by Dr Peter Harvey

Add Aspirin Trial

My oncologist asked me if I wanted to participate in a clinical trial, Add Aspirin.  There is evidence that a regular dose of aspirin can delay, or stop, cancer from recurring, which this trial aims to test. It lasts five years, and I am very happy to do my bit for medical research. I also think you get a bit more attention from the medical profession if you participate in a trial, so it’s not all altruism on my part.

How can I help?

I really don’t know how I will be involved with the cancer community in the future, or how much I will want to be involved. But I do want to participate where I feel I can add some value. The Whittington Hospital holds an annual Cancer Care Conference for their patients. I’m delighted that I’ve been asked to be a guest speaker at the next one, in February 2018. Talking about cancer, and its treatment, is something I enjoy, so this is right up my street.

I’ve also applied to be involved in the Patient and Carers’ Network working with UCLH Cancer Collaborative. The objective of the network is to improve the patient experience, something I feel passionately about.

Saint Nora

And still the gifts come! Thank you x

 

Writing this blog

I still feel like I have quite a bit to write about, so I’ll continue to write this blog on a pretty ad hoc basis. Please do let me know if it becomes boring and/or self indulgent.

The next big medical step will be my mammogram and MRI in January 2018, one year from diagnosis, which I will of course provide an update on.

 

Thought I’d share this card with you, sent to me by one of my great chums. We sometimes think happiness is all about the great big stuff in life, but often it’s the simplest pleasures.

P1010548

Now, go check your boobs!

Radiotherapy

My radiotherapy has gone really well, and is now nearly over. I’ve had 15 sessions that target the whole breast, and I am now half way through the 8 sessions which are a boost to the tumour site. So, my last visit to the hospital for active treatment will be this Thursday, 7th September.

IMG_0267

Radiotherapy itself is really straightforward. On arrival at the radiotherapy unit at the Royal Free, all patients scan in their barcode on their appointment card and then sit in reception half watching Homes Under The Hammer/Bargain Hunt/Escape To The Country on the TV in the corner. I was intrigued to see that the radiotherapy unit is next door to the heart attack centre, so I was expecting some kind of  “24 hours in A&E” action to be played out as we waited (especially as the sign is in red) but nothing so far.

IMG_0271

Once called for your treatment, you trot off to one of the cubicles to disrobe the part of you being treated and put a gown on. In my case, that’s top and bra off then a scratchy NHS hospital gown on backwards. Most patients seem to be very relaxed about this and don’t fasten the gowns at the back, so there are flashes of bare flesh on display. With my hot flushes, a bit of a breeze is always quite welcome anyway.

In the radiotherapy room itself, I lie on an adjustable bench, pull my gown down, rest my head in a padded doughnut cushion, and have arms overhead on padded rests.  The radiotherapists ask that you relax and don’t move, and they actually move you. It’s rather strange lying there half naked, being gently pushed in to the correct position as they call out a variety of measurements to each other, and say things like “11.7” and “good coverage”. There are also green laser lines across my body to ensure I’m in exactly the right position for the treatment.

The radiotherapists are a wonderful team. They explain everything they are doing, and patiently answer all my questions. At one session, one of them apologised for her very cold hands and rubbed them together in a bid to warm them before touching me. They also cover up my left boob (the one not being treated) with the gown once they have me aligned under the machine. I was so touched by this small kindness.

Once positioned, they say they are leaving the room. At this point I always feel I should say “Okay, thank you, see you in minute, bye!” but I’m so keen to not move even a millimetre that I just produce a little incoherent squeak.

At this point a loud alarm goes off, and then the machine starts to move around the bench. It settles in two places, so my body gets blasted from both sides by the special cancer killer rays. The machine makes of lots of impressive clicking and whirring noises. It’s all completely painless and there’s nothing to see. The total breast treatment took 4 minutes – it takes longer for the radiotherapists to expertly align me than the actually radiotherapy takes.

The boost sessions are even quicker. For this, the radiotherapists attach a kind of lens to the machine (it puts me in mind of a dalek’s eye) which points directly at the tumour site. A gel cover is put over my breast, and then we’re off again. I incoherently squeak, the alarm goes off, the machine clicks and sixty seconds later it’s done.

There are two computer screens in the room, and on it are the exact measurements the radiotherapists are to follow, plus a picture of my insides.  I was fascinated by this. During surgery, clips were left in my breast at the tumour site so that the technicians could see from the CT scan exactly where to target the cancer killing rays. The clips are harmless. One of my questions to the radiotherapist:

“Will the clips set off the machine at the airport?”

The answer is no. We then laughed that our underwire bras usually set off the machine anyway.

One day I noticed that the screen saver on these screens is a kind of mission statement for the hospital. It’s the values with which the staff intend to interact with each other and their patients. It was surprising to see something so corporate in a healthcare setting.

IMG_0416

IMG_0411

Hampstead Heath

I’ve been lucky to have my treatment through the summer months. I often walk across Hampstead Heath to get to the hospital, it’s a five mile round walk, and quite hilly, so good exercise. I’ve also cycled to the hospital, if I can carry what I need in my pockets, as wearing a rucksack is a little uncomfortable now. Then some days I’m just too pooped, and drive.

Side Effects

Once a week a nurse sees me to inspect my skin. All ok so far. The skin is red where it’s being treated, especially in the crease under my boob, and the armpit where clothing rubs. So when at home, I do a Charlie Dimmock and go bra-less. And suncream is now obligatory as the skin is super sensitive to burning for at least a year.

Fatigue is still my companion. I struggle to stay awake beyond 9pm, and sleep for about 10 hours a night. But my sleep is now punctuated by hot flushes which wake me up at regular intervals. The bed covers get thrown off, the cat gets a strop and I lie there like a star fish until I cool down.

Hot flushes are from taking tamoxifen, and I think they add to the fatigue. I’m having about twelve a day, so I’ll be having acupuncture at Maggies at the Royal Free as this can provide relief. I shouldn’t be using deodorant because of the radiotherapy, so what a great combination: summer heat, hot flushes and no deodorant.

Hair

IMG_0383

Hair, seven weeks after chemo

Look, no bald patch! Fair enough, there are quite a few white hairs, but I’d rather look like a version of Cruella Deville than have bald patches. This is seven weeks after my last chemotherapy, and I’m so relieved to see my hair regrow. Eyebrows and eyelashes haven’t got the memo yet about returning, but apparently this is normal.

I’ve continued to go to spin classes at the gym. They wipe me out, but it’s so good to get an endorphin rush and rebuild my fitness. It’s always saddened me to see the young women at the gym who feel the need to wear make up when working out. Well, I must confess that I will not now leave the house without painting on my eyebrows, including going to the gym. The other day, I was sweating profusely in spin class – the class is sweat inducing enough as it is, let alone with hot flushes. So, I rubbed my dripping face with my towel,

“oh shit, did I just wipe my eyebrows off?”

Chemotherapy effects

My sense of taste has fully returned. Hooray! I have now resumed my tea habit, and wonderful it is too.

Also, I no longer need to take Aciclovir, as my risk of getting shingles should have receded as my immune system will have rebuilt itself.

My finger and toe nails are hanging on, and I keep them painted with dark varnish to protect them. I do have Beau’s lines on my toenails, a side effect of docetaxol chemotherapy, but these will grow out.

IMG_0424

Beau’s lines on toe nails

Goals

I set myself a new goal of cycling a sportive at the end of August. I signed up for The Hertfordshire 100. In previous years I’ve cycled the 100 mile and 100 km routes, but this year it was just the short, 32 mile, for me.

It was a beautiful day, the sun was warm but not hot, and it felt unspeakably good to be out in the fresh air, cycling on country lanes, with lots of great camaraderie from fellow cyclists. I stopped just once, at the well stocked feed station. Whilst the hills hurt a little more than usual, I was delighted to complete the sportive. What a feeling.

IMG_0320

It left me exhausted for a few days afterwards, but it was worth it.

I’ve also had a piece published on Shine’s website about getting through chemo. It’s good to feel my experiences may be of use to others.

Shine Cancer Support Blog

Oh, and I’ve entered the ballot for next year’s Ride London 100.

Return to work – the next goal

 

Throughout my treatment, I have stayed in touch with work colleagues, and they have been hugely supportive. Last week I popped in to say hello to my team, and it was great to see everyone again. My plan is to return to work in October on a phased basis, gradually building up days and hours. It’s difficult to know how much the fatigue will impact me, especially as I will need to play catch up for a while. I’m looking forward to getting back to work, but also quite apprehensive. I haven’t had a break from work since I started working full time in 1991, so this is all new to me.

This will also coincide with not going to hospital on a regular basis. I see my oncologist at the end of September, but will then not have any appointments until January 2018, when I will have an MRI and mammogram. Strange as it may seem, there is a comfort in going to the hospital so frequently, and in being able to be so focussed on my treatment and recovery. Many cancer patients say the hardest time (psychologically) is once treatment ends. So, I’m doing what I can to prepare for this.

Gratuitous photo of the cat. Well, why not?

IMG_0452

 

Tears and night sweats on my pillow, but far fewer hairs

Just over three weeks since my last chemotherapy, and I’m pleased to report my hair has nearly stopped falling out. After four months of vacuuming hairs off my bed daily, the hair loss seems to have abated considerably.  I’ve made a couple of videos to show progress. I’ve tried to join them together, but I can’t work it out (I would use chemo brain as an excuse, but I’m actually just not good at tech stuff). Here’s the hair progress.

Brave The Shave – please don’t

At the moment, Macmillan are advertising their Brave The Shave campaign. Now, I love Macmillan, they are an amazing charity, and I have benefited from them hugely. But this campaign really gets my goat. I know people want to fundraise, which is hugely admirable. But choosing to shave your head hair off, by choice, is nothing compared to the trauma of losing all of your hair, day by day, because you have a life threatening illness. I feel it belittles the experience of those going through chemotherapy.

You see your identity, your femininity, your confidence, disappear down the plughole everyday, not knowing if, or when, it will grow back. Having very few eyelashes means constantly watering eyes, grit becomes a real problem. Sparse eyebrows make your face look bald. Loss of body hair makes you look pre pubescent. And you have to cope with this when you are emotionally and physically spent from everything else that chemotherapy does to your mind and body. And none of this is brave, you just have to get through it as best you know how. I’ve come to dread catching sight of my reflection when I haven’t done the “full works” of hair and make-up.

By all means, if you have long hair, have it cut short and donate it to a charity like The Little Princess Trust. But I think there are much better ways to fundraise, show solidarity, and support for those dealing with cancer than having a head shave.

Treacle

Fortunately, the treacle days are over. After emerging from the last round of chemo treacle, I had a couple of tearful days. I felt low and totally wrung out – I think it was the relief of chemo being over, and me processing what I’ve been through.

The legacy from my chemotherapy is a continued aversion to tea (it’s been months since I had a cuppa) and fatigue. I pace myself as the fatigue is now constant. If I have a busy day or two, then the next day I will need lots of sofa rest. On the plus side, I’m doing better at boxsets. For instance, I watched all of season two of Top Of The Lake in one day (totally ridiculous plot, but great television and good to see a strong female cast, including the wonderful Elisabeth Moss. What am I supposed to do on a Sunday evening now that The Handmaid’s Tale is finished?).

So, it’s more like intermittent syrup than full on treacle.

My overnight bag

Since the start of chemotherpay, I have had a standby overnight bag packed, at the ready, in case I needed suddenly to be admitted to hospital. It was a great piece of advice to do this.

I was delighted to unpack the bag this week, another milestone.

IMG_0034

Tamoxifen

This is the longest phase of Project Lumpy. My oncologist saw me on Monday, was happy with my progress, so prescribed Tamoxifen straightway.

Tamoxifen is a hormone therapy which works by blocking the effects of oestrogen on the cancer cells’ receptors. My cancer is oestrogen positive, meaning that the hormone oestrogen stimulates the growth of the breast cancer cells.

It’s a simple daily tablet, and I will take if for five years. During this time, my natural menopause should happen. After five years of tamoxifen, I will move to an aromatase inhibitor, which stops the production of oestrogen in post menopausal women.

Tamoxifen is not without its own risks. It increases the risk of womb cancer and deep vein thrombosis, so I need to be vigilant for symptoms of both. There are also the delights of hot flushes, night sweats, loss of libido and mood changes. Some women also report weight gain and facial hair – blimey, I’m thinking Life And Loves Of A She Devil.

St Nora

St Nora has brought gifts again (thank you), including the re introduction of some long lost friends in to my life. Through the wonders of social media, I have met up with some old school friends in recent weeks, and it has been so heart warming to reconnect.

Radiotherapy

The next phase, radiotherapy, starts on Monday. I feel positive about it. I’ll be having it at the Royal Free, which is a lovely walk across Hampstead Heath from where I live.

There’s a chink of light at the end of the tunnel.

Chemotherapy finished!

Two days ago I had my sixth, and final (ever, I hope) chemotherapy infusion.  Both of the last two infusions have gone really well. The nurses have to find new veins each time, which they are superb at doing, as the veins used are now about a third of their normal size. Apparently, they’ll take about a year to regrow. One of my veins is also discoloured. Shows just how bad ass those chemo drugs are.

The cold cap hasn’t been too bad, it’s certainly much more tolerable in the warmer weather. It’s also amazing how much easier it all seems when the end is in sight. And wearing Wonder Woman pants gave me added super powers.

After my last infusion this week, I had big hugs and thanks for all three of the chemo nurses on the chemo suite. Their bedside manner, care and patience have been exemplary. 

Treacle – a preferable variety

In terms of side effects, #5 was the easiest so far, so I have high hopes for the next couple of weeks as I recover from #6. I’m pretty much housebound for 6 days once the steroids wear off and the nausea, fatigue and leg pains start. I also have the joy of hot sweats, which in our heatwave of 35 degrees was not much fun! So, it’s very hot and sweaty treacle, but not as thick as the previous variety. 

The fatigue is cumulative, but I’ve just learned to pace myself and get lots of rest. One of the most long lasting side effect seems to be how weird my mouth feels. It feels slimy. One of my favourite drinks in the hot weather is an iced coffee, so I treated myself to one in the heatwave.  Yuck! I nearly spat it straight out – what a waste of £3. Apparently my taste buds should return to normal after a month or so. I can not wait to enjoy a cup of tea again. How you come to appreciate the joy of simple pleasures once you’ve lost them. 

And so far, my finger and toe nails have been ok. I’m wearing dark nail varnish to protect them, and wearing Marigolds for all household chores. Fingers crossed that don’t start to lift off in the coming weeks.

Being normal(ish)

After #5, my good week was great – I’ve seen lots of friends and work colleagues, it’s been so lovely. I feel very lucky. Been to a couple of birthday parties too, which has all felt like normal life. It takes me quite a bit of courage to do some of the things that used to be normal. I’m not much of a mingler at the best of times, and without Dutch courage, parties and events can be especially daunting. Can I talk about anything else but cancer? Will others be bored of me? Is my cancer the most interesting thing about me? Will they all notice my thinning hair? 

But I am determined that cancer will not stop me doing what I want to do. It’s about finding ways through. For instance, I feel very self conscious in my wig, so I’m wearing head scarves instead. It feels more me and works for me. My hair’s not too bad, the torture of the cold cap has paid off. But I don’t want a sunburnt scalp and I have a definite bald patch.

 

I’m continuing to exercise, including spin classes, on my best days. Exercise helps me hugely, mentally and physically. 

Radiotherapy

No hanging about with Project Lumpy, we’re on to planning the next phase. Yesterday I was at the Royal Free where I will be having my radiotherapy. Lots to learn, but all seems much more straightforward than chemotherapy. 

The hospital team were great, very welcoming and informative. I met my consultant oncologist, Dr Stewart, and the team of specialist nurses and radiographers who will plan and administer my treatment.

Radiotherapy starts Monday August 7th, and I go to the hospital every week day for four and a half weeks, so 23 days of treatment.

Whereas chemotherapy treats the whole body, radiotherapy is a targeted treatment. High energy x-ray beams are used to target any remaining cancer cells. As the radiation can also affect healthy cells, and brings with it its own cancer risk, the medical team plan the radiotherapy to target it to an exact site in the body. Consequently, yesterday I had my first ever CT scan (not scary at all compared to MRI) and learned how to lie still and flat with my upraised arms in rests and lasers angled on to my torso.

The CT scan produces internal images of my body so that the  radio waves can be targeted to the tumour site and lymph nodes, whilst trying to avoid my lungs. Fortunately, as my tumour is on the right side, my heart will be well clear. To position all of this accurately every time, yesterday I had my first ever tattoos! Three little dark blue dots, one on either side of my rib cage, and one in my cleavage.

Possible Side Effects

During radiotherapy, I am likely to get tired, especially towards the end of treatment as my body will have had its full dosage of radio waves. I’ve been warned that the fatigue is usually at its worst two weeks after radiotherapy finishes, but then wears off. So, that’s looking like mid September. The skin also gets burnt, so I will be liberally applying E45 cream to the site and wearing soft bras and cotton clothing. I’ve been advised to keep the site covered from the sun for a year after treatment, as it will be new “baby” skin, and quite fragile. 

Lymphodema risk increases, and my ribs are more likely to break than bruise. Better be careful on my bike then! It may scar my right lung, but this won’t affect my breathing.

The longer term side effects can be 20 years from now, and are potential lung and heart damage. However, as Dr Stewart explained, much of this is based on old data, when radiotherapy was less technically advanced. One of the radiotherapists told me that the big radiotherapy machine costs about £2m, and the level of technology involved is astounding. Quite amazing.

But despite all the possible complications and side effects, the consultant told me that radiotherapy reduces the risk, on average, of cancer returning from 15%/20% to less than 5%. Worth doing then.

Tamoxifen

Another phase of Project Lumpy is taking the hormone therapy drug, Tamoxifen. I’ll be starting this as the same time as radiotherapy. Really pleased these will be happening in parallel. Whilst this may add to the side effects I have to manage for a few weeks and months, it all hastens the time when I can start to define my new normal.

Saint Nora

More beautiful gifts. Thank you x

Goals

My fifth and penultimate chemotherapy session is tomorrow (hooray!). I have to take super high doses of steroids with this chemo, consequently this evening I am buzzing and wide awake. Not to mention melting in the heat of our June heatwave, and wishing to distract myself from the horrors in our beautiful capital of the past week. 

I thought I’d share how important I’m finding having goals to help me through treatment. Hopefully this won’t read as a management training guide….. 

Project Lumpy, one step at a time

My treatment has a number of phases

  • Diagnosis (welcome to your new world! Get with the cancer club quick, because we don’t have time to hang around)
  • Surgery (bye bye tumour! Hello scars and a new body, hopefully cancer free)
  • Chemotherapy (hair today, gone tomorrow! I’ve resisted that joke for weeks…. This is the phase where I lose myself, but find myself again. And again and again. Unfortunately it’s also one of the longest phases)
  • Radiotherapy (shorter, but could be tiring with its daily hospital visits)
  • Tamoxifen (the longest phase, being at least five years)
  • Then I’ll pop out the other end of active treatment and fashion my new reality. 

Phew, that’s a big project. 

From the start, this was unknown and overwhelming. I researched and educated myself so I could hope for the best and prepare for the worse. It was clear I needed to break it down in to manageable chunks (SMART objectives anyone?) For this I drew on my career as a manager, but also my running and cycling experiences.

Some of what running and cycling has taught me

When I set myself a goal of a 100 mile bike ride, there are months of training, then achieving the 100 mile ride itself. I feel like the last 15 years or so of my life have been, unwittingly, preparation for my cancer and its treatment. By this I mean: enjoying life (time with friends and family, travel, culture) especially to counteract the stresses of life, getting and staying fit, a relatively healthy diet, always being a healthy weight, yoga and mindfulness, living somewhere I love. Don’t misunderstand me, I’m no angel – I’ve loved drinking, spent too many hours at work over the years and been more stressed than is healthy. But on balance, I felt emotionally and physically resilient going in to treatment, the strongest I’ve been.

The treatment itself is the bike ride. When I’ve run half marathons or long bike rides I’ve learnt that breaking it down to goals gets me through. I didn’t invent this, it’s standard practise. And your brain usually gives up before your body does in such events, so finding the psychological plan is key. So, my first goal may be the feed station at mile 19 where I know there’ll be flapjacks, then the first killer hill at mile 28 with a thigh killing, lung bursting 18% incline (followed by, “yippee, I did it!” as I free wheel the descent at 38mph) and so on. 

Experience has also shown me that I get a dip mid way on all long rides and runs. I start to tire, pain or injuries start to niggle, and the end is not in sight yet.  This is what happens in my head:

“I can’t do this”

“What???”

“Shall I take a shorter route?”

“You trained for this, don’t let yourself down! You’ll only beat yourself up!”

“But I’m really not enjoying this, and there are still 60 miles to go, not even half way yet. Maybe I didn’t train enough”

“What, all those 5.30am starts on a Sunday morning, you’re going to waste that? Get over yourself” 

“But it hurts”

“You can do this. Keep going”

“But I’m tired”

“There are flapjacks 10 miles from here. Chewy, buttery flapjacks”

“Mmm, well I can do another 10 miles….”

And sometimes at this point another cyclist passes me (a very common occurrence, most road cyclists are men and I’m slow anyway, so it’s normal for me to be overtaken. I’ve seen hundreds of men’s bums in Lycra) and that cyclist will say something funny, we’ll share a joke or we moan about/praise the weather or curse the hills. And that fleeting human connection and shared experience can be a massive boost and push me on.

My treatment has been so similar to this – one phase at a time, then one chemotherapy at a time, set goals and rewards and remember there is a mid way dip, but I’ll get through it. The thick treacle after chemo #3 was a huge dip, and I could happily have given up at that point. But having goals and the support of family, friends and strangers are all invaluable. I may have more dips to come. I hope not. 

Aside from the treatment goals, I also set recent goals of Race For Life, The Pink Ribbon Tour and my talk at The Haven’s fundraiser.

The Haven Grand Garden Party Fundraiser

As I wrote about in a previous post, I was asked to talk for a few minutes about what this fabulous charity means for someone with breast cancer at their fundraiser last week. I felt so privileged to have this opportunity.

Chemo brain, fatigue and public speaking are not a good combination, so I was very apprehensive but equally determined to do the talk, and to do it well.

I’ve attached the video (hope my limited technical ability hasn’t scuppered the upload) so you can judge for yourself. I was shocked to see how my hair looks, and it is not the best public speaking I have ever done, but I’m pleased overall. A number of guests, including women touched by breast cancer, sought me out afterwards to thank me, which was so humbling. Most importantly, The Haven raised oodles of money. Brilliant.

And my mum, brother and some dear friends were with me, which made it a very special evening. 

Needless to say, I was completely wiped out for two days afterwards. But it was worth it. 

Now I need to set some more goals.  

 

Racing through chemo

Well the UK is a different place since I last wrote. Two appalling, vile, heart breaking terrorist attacks and a general election unlike any we have ever seen. Fear not, I won’t get all political. But it just reinforces for me how important it is that we live the best lives we can, and show humanity and kindness to ourselves and each other.

Shine Connect

Shine is a charity  providing support for young adults (20’s, 30’s, 40’s) with cancer. I went to their recent Connect conference, and it was a great day. Lots of useful information as well as the invaluable opportunity to meet others in the same situation. It’s humbling to hear from others and their cancer stories. For instance, one speaker had had 50 cycles of chemotherapy. There’s a unity in being with others living with cancer, and a real sense of hope and living as fully as we can.

One of the most interesting sessions was a talk from Professor Petticrew. Along with some of his colleagues, a few years ago he was able to demonstrate that the link between stress and cancer was a fabrication of the tobacco industry. It was known as early as 1940’s that smoking caused lung cancer. To divert attention from this, the tobacco industry funded a huge amount of research to link stress and cancer, hence moving the spotlight off smoking. Scandalous and fascinating. I wonder how much of this is going on right now with the food and cosmetic industries.

At the conference, I met a wonderful woman, Fiona Murphy, who has set up a service Sparkle Through Chemo. Fiona was diagnosed with cancer at 25, and saw how little provision of beauty treatments there was for those undergoing cancer treatment. So she did something about it, got herself fully qualified and now offers wonderful treatments and products. I have since had a fabulous manicure and pedicure as well as great advice to help me keep my nails through chemo.

IMG_9436

Chemotherapy #4

This was the first of three cycles of docetaxel, a step in to the unknown. What would this treacle be like?

I was given a high dosage of steroids to take the day before to counteract some of the side effects. Steroids make you quite wired and weird, so I had very little sleep the night before my chemotherapy. The infusion itself went well. My vein was usable, if sore. And the good news is I only have to wear the cold cap for two and a half hours with this drug, not three hours as on FEC. The combination of my tiredness and getting cold saw my heart rate drop to 42, so the chemo nurses wouldn’t let me leave until they could be sure I wouldn’t pass out.

I was quite exhausted that night, although the steroids kept me buzzing and awake. I woke up the next day, and to my surprise I felt ok. Tired, nauseous and foggy headed, but ok. The same the next day, I even went to a spin class. Then that evening I could feel the pain come on, starting at my feet and working up my legs. It’s quite bizarre to be lying in bed and to feel pain in your ankles and knees even though you have done nothing. I established a routine of alternating paracetemol and nurofen to the maximum daily dose, and it made the pain tolerable, although I was housebound for five days. And I had a lot of baths to ease the aches.

The other pain was in my pelvis. For five days, I inject myself in the tummy with a drug that boosts blood cell production to get my immune system back up and running. My nurse explained to me that this starts in the bone marrow in the pelvis, hence the pain. So, at least I knew the pain was my body doing its thing and recovering.

Unfortunately food and drink is all vile at this treacle cafe. Everything tastes yuck, especially all drinks. I’ve learnt that spicy food, with more flavour, is better, so I’m trying out lots of new Indian recipes. No bad thing as I could happily live on dahl.

And fatigue is ongoing, I guess this side effect really is cumulative. Not helped by broken sleep – I am now getting head sweats that wake me up, I think it may be the start of menopausal symptoms. It is as gross as it sounds.

It takes me a good couple of hours to get going in the morning. But I pace myself, and it’s manageable. I think it also adds to the chemo brain.

Overall, I have found docetaxel easier that FEC (so far). I had an EFT session, and this without doubt helped my anxiety levels. Those five days were dark, but not the molasses that I experienced after #3.

Chemo brain – quite alarming

It’s ironic that I have to remember to take oodles of drugs and yet my brain is uncharacteristically forgetful at the moment. So, I set alarms on my phone to remind me to take my drugs.

On my good week, I went to see Romeo and Juliet at The Globe (a very modern interpretation – the cast broke in to YMCA at one point). In the final act, as Juliet is riven with angst about taking the poison that may enable her to reunite with her true love, what should break the spell but the sound of an iPhone alarm? Shit, shit, shit! Frantic handbag fumbling to find the damn thing and turn it off. I did not know that the alarm works even though phone is turned to silent. Ooops, sorry fellow theatre goers.

Keeping fit, pushing on

When I was diagnosed, some of my first concerns were going bald, losing fitness and putting on weight. I’ve put a lot of focus on these areas, and what works really well for me is having goals. So, a few weeks ago I signed up to Race For Life and the Pink Ribbon Tour. Intentionally, I did not broadcast this as I knew chemo could take away my ability to do them, but internally I was determined I would. And I did.

For a number of years, I have completed Race For Life with one of my good friends who organises it for a group of us. I have always run it. And in all those years, it never occurred to me that one day it would be me who was the one with cancer.

What an amazing event. Hundreds of women in pink, some running the 5km in 20 minutes, others walking it in over an hour, but all doing it and raising funds and awareness. The sign on my back led to a number of women offering me their support, a reassuring arm squeeze, a hug, or just a smile of encouragement. I walked it, but I bloody well did it. The next day I felt like I’d run a half marathon and it took me a couple of days to recover, but it was worth it.

Then this Sunday I cycled the Pink Ribbon Tour a 25km route through central London, all in aid of Breast Cancer Care, which is the charity affiliated with this year’s Women’s Tour ( a pro cycling race – they go about twice as I fast as I do!). After signing up, I received an email from the organisers, with this request:

“102 professional women cyclists will be taking part and we want them all to carry a pink ribbon with a personal message of support from someone affected by breast cancer. The cyclists will then carry this ribbon with them as they cycle across the UK and wear the ribbons on their helmets in the final stage through London”

So, one of the pro cyclists had my message on a ribbon with her for the tour. How amazing is that?

As for my 25km (amateur) tour, I’m proud to stay I stayed in the lead group and finished in just under an hour. It was fantastic. Cycling the 8 miles home afterwards was not so great…..

There was lots of support from fellow cyclists, huge crowds and the sun shone on us. One cyclist gave me a high five when she learnt I was having chemo. Like the Race For Life, the cycle ride wiped me out and left my legs very sore, but it was worth it. Amazing memories, a sense of achievement, and a reminder of the huge support there is out there.

Life’s for living

After the Race For Life, I walked over the beautiful Albert Bridge to catch a bus. It occurred to me that being on London bridges now has a new sense of danger about it. But then having cancer is pretty dangerous too, and that isn’t stopping me.

IMG_9520

Hair still hanging in there

I’ve been really lucky so far with my hair. Spiteful as the cold cap is, it’s prevented me going bald. The rate of hair loss seems to have slowed down, so I am hoping it doesn’t get much worse. I’m still resisting the wig!

IMG_9611

I’ve lost half my eye lashes and eyebrows, as well as most other body hair. Thank goodness for eye make up, I can look like I have some facial features when I go out. Although mascara is a no-no as my eyes water so much more with fewer eyelashes. I know I can look rough, but Alice Cooper is never a good look. And I don’t recommend eating a curry in polite company when you’ve lost most of your nasal hair, you spend half the meal catching the nasal drips. Nice.

Saint Nora

The lovely St Nora has been generous yet again. Thank you, thank you.