My Breast Cancer Email Story

On June 30th 2014 I was diagnosed with Lobular Breast Cancer.  I had a 5cm lump in my left breast and cancer in three lymph nodes.  I needed a mastectomy, chemotherapy, radiotherapy and hormone therapy...the works.  Slowly I began to share the bad news with family and friends who live all round the world, and all wanted to know what was happening to me.  So I began sending regular email updates to a steadily increasing circle.  When I was through the first few crazy weeks I planned to stop filling people's inboxes but the message I got back was unanimous - Don't Stop.  People really wanted to know.  So I kept up the emails.  Here is my breast cancer story in email form. 

Sent: Monday, 30 June 2014
Subject: Test Results

Dear ladies

Thanks for all your support over this last week or so. Unfortunately I got the results this morning and they are not good- they have found cancer. The good news is that they have found it very early. We have an appointment with the consultant on Thursday and should know more after that.

It was rather a shock this morning, not helped by the fact that my doctor left the message at 8.30am before I could get to my phone and when I called back I just got messages to say that she is now on holiday! So I rang the hospital as instructed in my message....and had to do the whole process in French. Not quite the way I wanted to learn new vocabulary! and if I gave them my telephone number and birthdate correctly, it will be a miracle!

But Tim came straight home and we went for a walk and picnic in the woods (kid free) and had a chance to process it all. Basically, they found it super early through good luck and the summer might be rather crap but I'm going to be fine.

I will let you know what we learn on Thursday

Sent: Thursday, 3 July
Subject: Update

As promised...the next update.

 This morning Tim and I met with the consultant at the hospital and she seems very good.  We also spent some time with a cancer nurse who is lovely and she spent some time answering our questions and will support us through the process to come.

 The good news is that they are confident that they can treat me successfully, even if it has gone to the lymph nodes (which still scares me ... the ultrasound found something there but the biopsy there hasn't got enough material so they will have to do it again).

Best scenario is that is contained in the breast and still small and in one place in which case an operation and radiotherapy should be enough.  But I might need chemo, either before or after the operation, or a full mastectomy depending on what they find in the tests.

 Next week is full of tests for everything from my bones to my liver and an MRI as well.  So we won't be going to Durham next week.  Our flights to Portugal look pretty unlikely now too.

 So this afternoon I had to have a conversation with the kids to explain that the summer isn't going to be quite as we had planned.  Our cancer nurse gave us really good advice about what to tell the kids - I had already told them that I was going to hospital and would need an operation but had carefully avoided the words 'cancer' and 'death'.  She advised us that it was important to use these words because it is all too easy for kids to overhear things and it is better for everything to be in the open.  So I told them that I have breast cancer but I'm not going to die :)  

 They took it pretty well (though Rose is still gutted that we are not going to Durham.).  I'm still going to try and make it to the Harry Potter Studios.  Never mind the kids, I need something to look forward to!

 We probably won't know anything more now until next Friday when the doctor has promised to call me to let me know if the lymph nodes are positive or not.  Then we wait for the following Wednesday for the all-discipline meeting to decide what treatment will be.  If it's chemo, that will start very quickly after that.  If it's an operation, it will be before the end of July because that's when the surgeon goes on holiday.

 So that's it for now... More next week...

Sent: Monday, 7 July  2014
Subject: First Test Day

First test day - bone scan. Full results to follow but first indications are that there is nothing to worry about.  Think I might actually have dozed off while they did that one.

MRI and liver tomorrow.
Thanks for all your messages

Sent: Tuesday, 8 July 2014
Subject:

My dears,

Not such a happy day today.  They found a lesion on my liver.  She thinks it's an old lesion (and so benign) but can't rule out the possibility that the cancer has spread.  So probably more tests...

We're doing our best to stay upbeat - it is probably nothing (though it would be jolly nice to get a test result that just contains good news sometime soon).

Waiting, waiting, waiting...it's super grim.

MRI was fine (incredibly noisy, no dozing off in that one).

More poking and prodding in the general breast area tomorrow (not exactly sure what as I can't figure out the French).  And another lymph node biopsy I believe. 

Will let you know how it goes.

Sent: Thursday, 10 July 2014
Subject: Tests done

The tests are done.  We finished up with a lovely lady from Senegal today, she was so wise and sympathetic that she made us cry.

She told us as much as she could from the results so far and there is plenty of good news.

Using ultrasound, her first assessment is that my lymph nodes look normal. She did another lymph node biopsy which will tell us for sure, and it is possible that this will reveal cancer that hasn't shown in the ultrasound. But this is a much more positive visual assessment than I got in the clinic so we are feeling reassured. Her biopsy was also a lot more agonising but she managed to get enough fluid this time so hopefully I shouldn't need a third one!

My lungs are clear. We were anxious yesterday when they found a lesion on my liver but today she told us that it is small and calcified so almost certainly old and not related.  I will probably need another test to confirm that.

My right breast looks clear which is great news as lobular cancer is much more likely than ductal cancer to be in both breasts.

Unfortunately, the lump in my left breast is large. That means that, even if they don't find cancer anywhere else, I won't be able to proceed directly to an operation where they simply remove the lump. I'm likely to need either six months of chemo first to try and shrink it, or a full mastectomy. We'll get a much better idea next week when they have all the results.

We're off to London for a long weekend, to catch up with friends and family and gets some R&R before the big meeting next Wednesday.  I will send another update after that, for now I'm just looking forward to a few needle-free days

Sent: Wednesday, 16 July 2014
Subject: Update

Hi everyone, today was results day and here is the update as promised

The best news is that the lesion on the liver is benign - no liver cancer!

The lymph nodes are a bit less clear. The last test on the lymph nodes did find cancer cells ....but no lymph cells. Apparently this can mean that it was actually testing glandular fluid and not the lymph nodes at all.  The lymph nodes look okay so, fingers crossed, they might still be clear.  To find out,  they need to operate straight away, removing a lymph node for testing at the same time as the tumour in the breast. 

The tumour in the breast is at least 5cm, possibly larger, and has been there for some time. Because it is lobular cancer, it mimics the shape of the breast instead of forming a hard mass so is difficult to detect. The doctor candidly, but politely, pointed out that the tumour is large but... my breast is not. So it's a mastectomy. 

What happens after that is a bit of a mystery until we get the results of the op.  There's some chance I might get away without chemo but probably I will need chemo and possibly radiotherapy as well. 

If there is cancer in the lymph nodes, I will need chemo and radiotherapy. If there is nothing in the lymph nodes but the tumour is over 5cm, I will still need chemo because cells from a large tumour are more likely to have found a way to get into other parts of the body. 

The good news, so they tell me, is that my tumour has good hormone receptors, so they will also give me hormone therapy. Usually, oestrogen uses this receptor to attach to the cancer cells and this tells them to divide.  Under hormone therapy, I will take a drug which mimics oestrogen but when it attaches to the cancer cell, it prevents it from dividing. I'll have to take this for ten years but it reduces the likelihood of recurrence by 40%.

 Confused yet?

One step at a time! The operation is taking place next Wednesday 23rd and I will be in hospital for 4-5 days. Then Wednesday 30th we will get the results. 

Fortunately, whatever I need next it won't be too urgent. So we're hoping to head off on holiday just one week later than planned and face the next steps after a few weeks relaxation.  

That's it for now.

Sent: Thursday, 24 July 2014
Subject: Operation

Hi everyone

I had the operation yesterday and am told it went very well, so I expect to be out of hospital by Saturday lunchtime. Already I'm feeling much stronger and am able to move around (though sitting on my bed and letting people bring me things is still rather appealing). We have to wait until Wednesday to get the results on the tumour and the lymph nodes.

Just wanted to say thanks for all your good wishes, prayers, spiritual thoughts and messages. They have really supported us through these last few weeks. Incredibly it is only 24 crazy days since my diagnosis - and already the tumour is out!

I will send another update next week and then I promise to stop...we're off on holiday!

Sent: Wednesday, 30 July 2014
Subject: Test results day

Hi everyone

So today was results day and this is what they found.

They took out a whopper of a tumour - 5cm of invasive cancerous tumour (actually made up of two smaller tumours joined together) inside a larger pre-cancerous mass of 7cm. It's amazing that this was hard to find on the MRI and didn't show up at all on the mammogram but lobular cancer seems to be particularly difficult to detect.

They removed nine lymph nodes and three of them were cancerous. One had split open.

Obviously, the operation removed the entire tumour plus surrounding breast tissue, as well as the cancerous lymph nodes so, in theory, I could already be cured. But if any cancer cells got away, it could come back somewhere else. So now I move onto the next phase of making sure that the cancer doesn't recur and, due to the tumour size and the cancerous lymph nodes, they want to throw every 'therapy' they have at it.

So I will start with chemotherapy as soon as we get back from holiday to mop up any cancer cells that could have got into my system. I will probably have 18 weeks of chemo although they are waiting for the results of one more test and if that comes back positive, I will need 24 weeks (the doctor seemed to think that this was unlikely but we will have to wait till Friday to find out).

Then I will have 5-6 weeks of daily radiotherapy to blast the lymph node area.

Then I move onto the hormone therapy tablets for the next ten years which should neutralise anything left.

All that should destroy any cancer cells that survived the operation but it will also blast a few other cells along the way... including my hair follicles.

I've slightly lost track of all the medical appointments I need for one thing and another (not forgetting Rose's appointment for her broken arm) but tomorrow we are flying out to Portugal so I don't have to deal with any of it for the next three weeks. And just to end up on a positive note - Rose had her hot, heavy plaster cast removed yesterday and is now sporting a colourful, WATERPROOF cast, much better for the holidays.

Until the end of August!

Sent: Thursday, 28 August 2014
Subject: First Chemo

Hi everyone,

Hope you all had a great summer and are ready for the start of term!

I had planned to make this the last email now that things have settled down a bit but several people have asked me to keep the updates coming so here we go. I'm also conscious that this list has got rather long so if you'd prefer not to get these emails please let me know, I promise not to be offended! Also if I've missed anyone...let me know.

As I write, I'm in the hospital for my first chemo session. This morning I had a PICC line inserted - a catheter which will stay in my arm for the next few weeks and allow them to put the drugs straight into larger veins near the heart, bypassing smaller veins that could be damaged. Now they can just plug me in.

They've given me lots of medication to combat the nausea and mouth ulcers...best thing for the fatigue is exercise so I'll be joining a group here at the hospital for exercise 'a la carte' (designed for people on chemo).

Otherwise I'm recovering well from the operation. The first few weeks were frustrating as I couldn't move my left arm much, but the exercises are helping and now it is just a bit stiff. A few sunny weeks in Portugal were perfect to recuperate ...just what the doctor ordered. Now we're back in the routine with the kids back at school.

Many thanks again to everyone for all the support and encouragement, it really does make a huge difference. We really appreciate everything people have done this summer: the messages of support and wonderful things arriving in the post, the help with childcare which meant the kids still had a great summer even when Tim and I had endless trips to the hospital, the help while I was in hospital from grandparents who travelled over, the meals cooked for us (and sometimes delivered), my hospital visitors, my super chauffeur and the Bovenburg ladies who provided a refuge for me and the kids this summer...you've all been amazing.

Back at home now and finishing this email. So far I still feel okay. But I guess I'll have to wait and see how I react over the next few days as the chemicals get into my system, everyone is different. Only one thing is sure...in two weeks my hair will start to fall out. So tomorrow I'm going wig shopping!

That's all for now,

Sent: Thursday, 18 September 2014
Subject: Second Chemo

The first round is completed! And it went much better than I had feared. The way that chemotherapy works is that it kills off cells that divide rapidly. This should pick off the cancer cells but unfortunately also targets healthy cells that also happen to divide rapidly. So I was able to chart the progress of the drugs through my digestive system (the nausea wasn't too bad but my grumbling tummy could drown out the TV!), then up into the mouth causing ulcers and sore lips, before reaching the hair follicles. So, before my hair started to fall in clumps around the house, I decided to have my head shaved. I found great boutique that does everything and spent a fun couple of hours trying on wigs and hats. Rose made the final decision and then they shaved my hair off and I left wearing my wig. After trying a variety I ended up with something exactly like my real hair in a very cute style (so cute that I have had many compliments on my new 'hair cut'). There's just one hitch. My hair hasn't fallen out. So I've still got bristles under my wig.... I must admit I'm rather hoping I'm not going to be in the 0.001% who keep their hair, that would be so annoying! It will probably go in the next week or so. I certainly never expected to be WANTING my hair to fall out... I am just back from the hospital, after round 2 of the chemo. Hopefully this round will go as well as the first time though the nurse did warn me that I should expect the fatigue to get worse each time. I have, however, a great support network here in Brussels with a rota of meals organised for the week after each chemo and pickups from hospital. As ever, we are deeply grateful for all our support here and from our friends around the world. We are aiming to do something nice to celebrate the end of each cycle. So last weekend we did that most touristy of Brussels things and went out for moules frites off the Grand Place at Chez Leon...touristy but good.  One cycle down - five more celebrations to look forward to  Until the next time! Sent: Wednesday, 8 November 2014 Subject: Third chemo postponed

A bit of a surprise this time: today should have been chemo day but, after my blood test yesterday, it's been postponed for a week.  I wasn't expecting any problems after a relatively ok second round, so I was all ready for round number three today. Unfortunately my white blood cells have refused to cooperate.  Chemo targets all cells that divide rapidly, including the white blood cells which protect the body against infection.  So it's normal for the white blood cell count to go down after chemo, particularly in the second week when it's important to watch out for fever or infection.  But usually the white blood cell count has recovered by the third week.  This time mine just hasn't risen up to normal levels again yet (I'm blaming the sore throat that's going round and got me last weekend).  So there's nothing I can do but wait for another week when, hopefully, my blood test will come back with a better result.  It's frustrating: a reminder that no matter what I do and how carefully I organise everything around my chemo dates, I can't control how my body reacts to the treatment.  I'm learning to be flexible and roll with it :) On the plus side, my hair has finally caught up with the script! Having gone ahead and had the Head Shave with the expectation that my hair would fall out 14 days after the first chemo, I was a little disconcerted when it clung on defiantly.  And even started to grow... I'd so carefully planned my transition from Hair to Wig, the least my hair could do was actually fall out!  Three weeks after the Head Shave, the bristles were getting long and uncomfortable and I was starting to wonder if I was going to need ANOTHER shave when...at last...I was in the shower and ran my hand over my head, and it came back covered with little bits of hair.  Almost the whole lot fell in one shower and I was pretty happy at that point that I was only washing away bristles and not scooping wet hanks of hair out of the plughole.... The start of round 3 may be postponed but I have still completed two rounds and so was due another celebration last weekend.  Last time it was moules-frites followed by big bands in the Grand Place, this time we had eat-as-much-as-you-like spare ribs in a quirky restaurant downtown (where Fergus rose to the challenge and put away an astonishing pile of ribs) and then listened to a swing band at Brussels Nuit Blanche celebration.  Nuit Blanche went on through the night until 7am ...but we did not.  I am happy to be tucked up in bed nice and early these days :). That's all for now.  Fingers crossed, next week will be my last session of FEC and when it's completed, I'll be half way through the chemo.  Sent: Wednesday, 15 October 2014 Subject: Good news There's lots of good news this week so I had to share  Most importantly, my white blood cell count is back up so I can go ahead with chemo tomorrow! Also, this will be the third and last session of FEC which means my PICC line can come out.  As FEC can damage the walls of the small veins, it has to be administered through a PICC line which goes all the way from my arm to a point near my heart where the veins are larger.  After FEC I will have a different type of chemo (Taxotere) which doesn't affect the veins the same way and can be administered through an IV. So no more bandage on my arm, no more weekly appointments with the nurse to clean out the tubes, I can swim and, at last, I can sink into a nice hot bath again... And last but no means least - we had expected to only be able to go away for a long weekend in the half term break at the end of the month as my 4th chemo fell in that week. Last week's delay means that all my dates are pushed back a week but at first this didn't help much as I still had a 20 min appointment with my oncologist on Wednesday morning that couldn't be moved. So I begged...and my lovely nurse managed to move it. We are now free to spend the whole half term week chilling out in Germany. Until next time! Sent: Tuesday, 4 November 2014 Subject: Half way through chemo! Unfortunately my blood tests this morning showed that my bone marrow is still struggling to cope.  Plan A was to start three cycles of Taxotere tomorrow, administered once every three weeks.  But my white blood cell count is too low again.  One option would be to wait for a week for my white blood cells to recover as I did last time, but this problem is likely to recur and too many delays could make the chemo less effective as well as making me vulnerable to infection.   So we are moving to Plan B and I will start Taxol tomorrow.  This is just as effective and less severe for the white blood cell count.  The catch is that Taxol is administered weekly so I will now have to spend a couple of days at hospital every week for the next nine weeks, including during the Christmas holidays.  Friends in Brussels - I am looking to borrow good books as I will have a lot of time to read them! We had some good news during this cycle.  My second liver MRI confirmed that the lesion is benign -the cancer is not on my liver. A big relief! The MRI also showed that my liver looked 'odd' but, after various more tests, they concluded that this is how a liver looks on chemo - they'd never done an MRI on a liver right after chemo before! And as usual, we celebrated the end of another cycle of chemo.  This time we were in Germany and we took advantage of the fact that I could go in water again for the first time since July. We had a spa day in a great place which had a section for the kids with huge slide, outdoor pool with rapids etc etc...and another section for us with hot whirlpools, an outdoor pool that steamed in the cold and a heated aroma-cave. So I did the huge slide with the kids....then retreated to the aroma-cave for a little doze... Many thanks again for the amazing dinner and taxi services - we had a week of culinary treats after my last chemo Until next time! Sent: Wednesday, 26 November 2014, 21:51 Subject: A third of the way through Taxol Believe it or not another three weeks have slipped past and I'm now a third of the way through the Taxol chemotherapy. The good news is that I've not been feeling too bad.  I'm tired, mainly because it's not easy to sleep with the steroid-jitters, hot flashes and muscle pains!  But I've been able to carry on as normal, much to Rose's relief as she was able to go ahead with her long anticipated birthday party  It's a bit relentless having chemo every week... but nowhere near as bad as I think I made it sound in my last email when I implied that I had to stay overnight in hospital every week!  I have to go on every Wednesday for a blood test and wait for an hour or two to see the doctor with the results.  Then I go in again every Thursday for the chemo itself which was taking 4-5 hours on the previous regime but now only takes 2-3.  So I certainly know the way up to St Luc's very, very well now but I'm not literally living there! I do, however, also drive up there twice more each week for my hospital exercise class (picture a room full of ladies of a certain age wearing headscarves and attempting to exercise with strips of elastic and ankle weights...we must look very amusing).  But we do have a giggle and there's even some chance I might come out of this in better shape than I started... The less good news this week is that my white blood cell count is super low (I now have severe neutropenia).  So I can't have chemo tomorrow and instead I need a series of five once-a-day injections to stimulate my bone marrow.  To my dear friends in Brussels who are providing me with weekly meals: I'm going to ask that we stick to the planned rota anyway because the injection can also result in painful side effects so I think I'll still be grateful for the help.  But forgive me if I don't greet anyone with a kiss for a while - I need to avoid any of the bugs going round! The injections should get me back on course so next week I can carry on with the remaining six sessions of Taxol.   Until the next time. Sent: Wednesday, 10 December 2014, 17:54 Subject: Half way! I've been a bit up and down the last couple of weeks.  We were all rather anxious while my white blood cell count was seriously low - especially at this time of year when there are so many coughs and colds going round.  But thanks to the injections to stimulate my bone marrow (administered by my lovely husband, he can now add 'nurse' to his long list of skills), my count was just high enough last week to go ahead with the fourth Taxol. The last few days, however, I've been feeling exhausted, achy, dizzy, breathless and tight chested as if coming down with a cough.  Given that my count only just scraped in last time, I was convinced that my blood test today would show that my white blood cells were too low again.  With so many delays, the road ahead was starting look long indeed. But it seems my white blood cells are determined to catch me out - they are now at the highest level they have been since I started Taxol!  So tomorrow I will have the fifth of the nine Taxols which will take me over the half way mark.  If I can keep on course, I will be done in early January. Apparently it is normal for Taxol to result in water retention, including on the lungs, so that explains the breathlessness.  I've got low blood pressure, hence the dizziness, so the doctor told me to eat more salt and sit with my feet up.  As I write I'm enjoying a pack of crisps with my feet up ;) By the way, I read some fascinating research that showed that women with breast cancer who had good social support networks actually have a better chance of beating cancer.  Of course, I might expect that the wonderful practical support that my fab friends in Brussels have been providing would help my recovery as I have less stress and more time to rest.  But even allowing for these factors, the research showed that you have better chances of beating cancer simply by having people to encourage and uplift you.  I know some of my friends and family who live far away have felt frustrated that 'all' they can do is send encouraging messages and prayers  - but you are all doing more good than you realise :) Until the next time Sent: Monday, 22 December 2014 Subject: Happy Christmas! Happy Christmas everyone! Today Santa delivered an early Christmas present.   Last week my white blood cell count was high enough to allow me to go ahead with chemo...but only just.  To avoid ending up with seriously low levels again, the doctor prescribed another course of five injections to stimulate the bone marrow, this time administered alongside the chemo.  Back to duty, NurseTim!  The result was a painful few days of Taxol muscle aches and Neupogen bone pains....and long, sleepless nights. But it was worth it - my blood test today was NORMAL for the first time since I started chemo.  And as a bonus gift, my blood pressure (normally very low) was also good (must be my excellent efforts to eat more salt as instructed, more crisps, please!).   Just what I wanted for Christmas. So I've got the green light for chemo tomorrow which leaves only two more after that - the end is in sight!  Next step will be to plan for radiotherapy and unfortunately I've just heard that the radio unit at my hospital is closed so I will have to go to another hospital.  That's rather a pain as it will certainly be a longer commute and I have to go every weekday for six weeks...but we'll figure that one out when we come to it. For now I'm just happy to be feeling good (I've even got a little fuzz growing on my baldie head ) Which just leaves me to wish you all a festive thank you for all your generous support over the last difficult six months (yet again our meal rota filled up with volunteers within hours....our sincere thanks).  Wishing all of you a very merry Christmas and all the best for 2015! Sent: Tuesday, 30 December 2014 Subject: A third of the way through Taxol This week getting to the hospital got a little more complicated - we had to dig the car out from under the snow first!  The hospital was quieter than usual though thanks to the festive season and I got my blood test visit done in record time.  After my outstanding post-Neupogen blood test last week, the pesky white blood cells have plummeted once more to low levels - still high enough for me to go ahead with chemo today but next week is looking dodgy.  Just as well I'm near the end, the doctor said, as my bone marrow seems particularly 'sensitive'. The rest of me is feeling rather 'sensitive' now too: the aches and pains from last week ran into this one so I'm constantly tired and achy at the moment.  The tops of my fingers are numb, the nightly hot flashes and insomnia continue and my nails are starting to look suspiciously brown.  My appetite is just fine though - the problem with being weighed weekly is that I can see exactly how much I put on over Christmas! But there is just one more chemo to go now and today I got my radiotherapy consultation booked in to plan the next stage, hooray!  And we still had a lovely Christmas, so far it hasn't stopped us doing all the things we wanted to do. Wishing you all the best for 2015 - and good health all round ;)

Sent: Wednesday, 7 January 2015, 18:48
Subject: End of Chemo!

Yesterday morning I made my way to the hospital feeling rather downcast: after the spectacular crash in my white blood cell count last week, the doctor had warned me that I was unlikely to be able to go ahead with the final chemo session this week.  The last couple of weeks have been getting tough and the idea of dragging on for yet another two weeks was not appealing.

We had to wait an hour and a half in the dismal waiting room to see the doctor which made me suspect that she was consulting my oncologist about the problem. What would he recommend?  Would I have to do yet another course of the dreaded Neupogen shots before I could progress to the last chemo session?

Finally I was shown in...and my WBC count is up again all by itself!  Yes, my doctor can't understand it either and it's still on the low side but definitely high enough for chemo.

So today I had my very last chemo session!!  Five months of chemo... almost over.

Now I just have to get through one more week of symptoms before I have a few recovery weeks of no treatment.  I feel like a marathon runner who has suddenly realised that the finishing line is a mile closer than expected.  There's still a bit to run but my flagging footsteps have gained a bit of extra bounce :)

Until the next time...when it will be on to radiotherapy.

Sent: Tuesday, 20 January 2015
Subject: And now onto Radiotherapy

Thank you all so much for the tidal wave of support for the end of my chemo!  I'm feeling gradually much better though I think it will take a little while to get completely over the fatigue and aches and pains.

Yesterday Tim  and I went to St Elizabeth's to find out about the next stage - Radiotherapy!

St Elizabeth's is a very swish hospital with a wonderful radiologist who gave us an astonishing amount of time to ask questions.  We learnt that they will irradiate various places: the chest wall just in case the surgery didn't remove everything and a couple of areas of lymph nodes that could not be reached through surgery.  The radiation will sterilise these areas and reduce the chances of localised recurrence from around 15% to less than 1%.  A very nice statistic.

I will have 25 sessions of radiotherapy (one every week day for 5 weeks plus a sixth week at the beginning when I will have some preparatory appointments).  The sessions will be painless (he promises!) and I won't have any effects in the first few weeks though towards the end I can expect some fatigue (but not as bad as chemo) and some dryness and redness on the skin (but not burning).  He also agreed that treatment can start after half term so we will be able to go away for a holiday, hooray!

All in all, the radiologist was very reassuring and I'm feeling reconciled to the fact that I can't have this treatment at my usual hospital.

The only downside is that it will be rather more stressful to get there.  The drive wasn't too bad, though there is a lot more traffic.  The worst thing, however, was the parking!  There is an underground hospital car park but it was packed and tiny, not much fun in our super enormous car... 

Anyway, I have several weeks now with NO TREATMENT (!!) which also means that I will give your email in-boxes a well deserved rest.  Many thanks again for all your practical and emotional support though the chemo; I am optimistic that I'm through the worst of it :)

Until the next time

Sent: Wednesday, 25 February 2015, 13:43
Subject: Starting Radio

Dear friends, the last few weeks have flown by and it's time to get back to treatment.

This week I have already had two preparatory sessions at St Elizabeth for the radiotherapy - the actual zapping starts tomorrow.  

First they have to get the positioning exactly right, which has been a rather surreal experience. They place you very precisely on your back in the machine, tell you endlessly that YOU MUST NOT MOVE, then the machine whirs around a bit.  After that they draw purple lines on you with what looks like pencils.  Finally they tattoo a smattering of dots over the chest area.  These are all to make sure that they can recreate exactly the same position each time.

At the moment it looks to me as if some very drunk people have been trying to play noughts and crosses on my chest though Elena thought, rather more poetically, that they had covered me with stars. The lines will eventually fade but the dots are tattooed and will remain.  I have therefore ticked off one of the things that appears on many bucket lists of Things To Do Before Turning Fifty: I have my tattoo.  It's a kind of  Join-the-Dots tattoo.  Perhaps I should turn them into little flowers?  But no, it hurt!

Getting to St Elizabeth has been far easier than I'd feared, largely due to a little miracle.  I was talking to a friend who wanted to know what help I needed during radio.  Jokingly I told her that I needed only one thing - a parking spot at the hospital.  Okay, she replied without missing a beat.  It turns out that her daughter's boyfriend lives opposite the hospital and I am now armed with the code that allows me to park in his compound - incredible!  Today I drove and traffic and parking were no problem at all.  Another friend explored the tram option with me and (after getting a bit lost in the Bois de la Cambre) - I now also know how to get the tram and walk across the park to the hospital so I have another option for the spring-like days that will undoubtedly arrive any day now.

Despite my insistence that I am not planning to be ill during radio, my fabulous support network has swung into operation to provide meals again.  Many thanks :)

I am ready with cotton T shirts to wear against my skin every day and am no longer allowed to use soap or deodorant (so apologies if I smell...).  Other than that I just need to turn up at the hospital every day.  I will report again when treatment is properly underway...

Until the next time

Sent: Sunday, 15 March 2015, 14:11
Subject: Half Way Already

Remember the months and months of slogging through chemo?  Those endless milestone emails that landed in your inbox every time we celebrated being one footstep further up the mountain there was to climb?

Well, here I am again and - believe it or not - I'm half way through radiotherapy ALREADY!  I'm well into the groove of my daily hospital visits and on a good day I can do the whole round trip in a breezy hour and half.   No pain, burning or other side effects...as far as I can tell.   I have to add 'as far as I can tell' because a horrible flu virus has been working its way through the family these last couple of weeks so we've ALL been feeling rotten.  Luckily the radiotherapy guys are much more relaxed about my fever than the chemo docs who would have whisked me through A&E and admitted me into hospital at the mere mention of an elevated temperature.  This lot are only concerned that I don't move a millimetre once in position - so no coughing or sneezing during radiotherapy sessions.  Seriously though, I feel lucky that this virus didn't hit while my white blood cells were dangerously chemo-low, instead I think I've actually been less sick with it than the rest of my family.

I was amused that my last message (Starting Radio) had quite a few of you thinking that I was appearing on a hospital radio station or something.  It was a refreshing reminder that the rest of the world doesn't add a silent 'therapy' to the end of words...  But the friend who thought I might be starting as a DJ got my biggest grin - I'll never be cool enough to be a DJ but thanks for even thinking that I might be ;)

Until next time.

Sent: Thursday, 2 April 2015, 14:27
Subject: Last Radiotherapy :)

It might have been April Fools' Day but this is no joke - yesterday was my last radiotherapy session!

The last few weeks have gone very quickly and the sessions themselves have been much like having a series of X rays.  I saw the radiologist for a last check up this week and he had a long list of questions.  Do you have swollen hands?  No.  Pain in the armpits? No.  Respiratory problems?  No.  Bone pain?  No.  Redness on the skin?  Well, a little bit.  Soreness?  A little sensitivity: as if I have sat in the sun a bit longer than I should.  But dryness, flaking skin, itchiness?  No, none of the above.  

It made me realise how many possible side effects there are and how (almost embarrassingly) lightly the radio seems to have affected me.

And finally, fatigue?  Like at the end of chemo?  Well, yes, I'm pretty tired.  But bone-draggingly exhausted like back in early Jan when I'd look at the stairs and wonder if I could make it to the top?  No, nothing like that.  And to be completely honest, the last few hectic weeks (our lovely romantic dinner and night away while grandparents stayed over with the kids, the Sting and Paul Simon concert in Antwerp on Monday night, the ten 12-year old boys who came for Ben's birthday sleepover, arriving just as we got back from ice skating...) well, I guess a little tiredness might be excusable... 

Of course my skin is now fragilisé as they say here, so I will need to use lotion on it for the rest of my life and be a bit extra careful with the sun.  But all in all, the radio couldn't have gone better.  Has it worked?  Its purpose is largely preventative so only time will tell - but the doctors are confident that the chance of recurrence is as low as it could be.

And that small chance will be further reduced by the final phase of treatment: Tamoxifen.  This bit is easily administered - no more hospital visits - just a pill every day for the next ten years.  I am fortunate to have a hormone receptive type of cancer i.e. my cancer bonds with estrogen in order to replicate.  Tamoxifen mimics estrogen and bonds with any stray cancer cells left behind by all the other treatments, preventing the cancer from bonding with estrogen and effectively neutralising it.  

I took my first tablet nervously this morning.  There are all sorts of possible side effects and it has been so great this last few weeks to have no more hot flushes, night sweats, insomnia etc so my heart sinks at the thought of going back there (menopausal friends will doubtless empathise...).  But everyone reacts differently so I will just have to see how it goes, perhaps my luck will hold.

Meanwhile I was rather shocked to walk out of my oncologist's office with the prescription for Tamoxifen and realise that I have NO MORE doctor's appointments until my first check up in July! I will still be at St Luc's twice a week for my exercise class though - after lurching from one thing to the next for so long, it is oddly comforting to know that I won't be entirely cut off from hospital :)

My hair continues to grow - I have a dark, shaven-jailbird hairstyle just now, not quite ready for public viewing yet but getting that way - and my eyebrows (once down to three hairs in total) and eyelashes (which went entirely) are nearly back to normal.  Thanks to the exercise classes, I am probably in better physical shape than I was when I was diagnosed.  And I continue to be overwhelmed by the amazing support we have received through this period: we are truly fortunate to have you all in our lives.

A big thank you to all from us all.

Sent: Wednesday, 22 July 2015, 20:02
Subject: A Year has Passed

Can you believe it? A year has passed since I started sending these update emails.

Today I went for my three month check up after the end of all my treatment and they found one problem: my vitamin D levels are low.  So I'm pretty much like everyone else in Brussels (and sun-deprived London come to that).  Everything else is perfect. 

Of course (as well as vit D tablets) I will be on hormone treatment pills daily for the next ten years (Tamoxifen) and these have a great success rate in preventing recurrence.  I've been lucky - often Tamoxifen causes loads of side effects but I only have a few minor issues.  My biggest problem has been remembering to take it 

I still have some ongoing issues post radiotherapy.  After my last update email, the whole area of skin went red and then black and felt pretty sore for quite a while.   It's better now but reacts dramatically to the sun so I'm battling a bit with fiery red skin around my neck where it's difficult to keep it covered.   Just as well it's been so rainy!  My arm also stiffened up again after radiotherapy so I'm back to doing stretches.  Mind you, I had a back massage the other day and that really helped so perhaps I just need medicinal massages regularly...

My hair is growing back, I might even need a cut soon.   I'm relieved that it didn't come back completely grey as it often does post chemo (just a fair share of grey sprinkled in).  In fact it's dark and curly at the moment so very different from my pre-chemo hair.  It will probably change over time so I'm not thinking too much about hairstyles just yet...just enjoying having hair.

They say that chemo leaves you feeling tired for a long time and I certainly do feel quite tired but to be honest I think I would anyway as we are now surrounded by boxes and in the process of moving house - this time without much help from the packers. We're going home! My files will all be transferred to St Georges in Tooting and hopefully I will go in to meet my new oncologist in September to see what they want to do to monitor me.

So we're bidding an emotional farewell to our wonderful friends in Brussels.  And we're looking forward to spending time with family and friends back in the UK ....and having many visits from friends living all over the world.

Have a fabulous summer,