Tuesday, 14 December 2010

Moving into Another Year

The final appointment of this "appointments season" was last week - the climax of it all really. It was the mammogram result and check up with my surgeon.  I was delighted to be told that all is well; that I'm still living with our friend NED (No Evidence of Disease). Now I am striding forward into Year 3.

It was another very positive appointment. Not just because all appears well, but also because they seemed to be genuinely happy for me that the mammogram and exam were clear, that all in all I'm feeling so much better on Aromasin than I had been on tamoxifen, and that the genetic testing hadn't shown a BRCA gene mutation. There was also the welcome news that because I am only just osteopenic, the bisphosphonate may not only protect my bones from further thinning due to the Aromasin but might even restore normal bone density. So I left feeling very positive indeed, and toddled off to buy myself a Year 2 anniversary present. Cancer does give you plenty of opportunities for present buying!

This year I was pleased to find that I wasn't too stressed about the mammogram in advance, but the wait for the result could have been difficult. It was made easier because there were only 8 days to wait for the result and for 4 of them I was away with some of the amazing and supportive women I met through the Breast Cancer Care online Forum. Although we all log into the Forum much less than we used to when we were in the thick of it all, we still look in from time to time and are always there for each other. Small groups meet up every now and then for anything from a couple of hours to a long weekend.

We still do talk about cancer stuff when we get together; it is a relief to be able to talk to people who understand the true situation and who know that outside tabloidland there is no such thing as "the all clear". But in addition to comparing scars and drug side effects there is now a lot of chat about everyday life, work, leisure, families, holidays, etc. Although we meet comparatively rarely and met for the first time only a year ago, such is the bond between us that we behave as if we have all been friends for years.

I sincerely hope that over the coming years cancer will continue to retreat to being an increasingly smaller and smaller part of our lives, in spite of the various permanent legacies with which it leaves us. However, I suspect that for many of us the bond of friendship will continue to evolve, and this is one permanent legacy for which I am exceedingly grateful.

Thursday, 25 November 2010

The Trials of Trials and Studies

My experience has been that a cancer diagnosis brings a plethora of invitations to participate in studies. Many of these require only a one-off blood sample and/or questionnaire. A few involve some sort of ongoing regular participation.

In the early days, when standing still was difficult enough and moving forward was just a far off ambition, the decision as to whether or not to take part was very straightforward.  If it seemed likely to be of reasonable benefit to me or to future generations, I tended to do it. As a result, I gave a lot of blood samples, filled in numerous questionnaires and was even interviewed about the involvement of friends and family in my decision making processes.

Now that I am a couple of years on (surgery was 2 years ago tomorrow), I'm a bit more discriminating but still happy to participate in studies involving one-off samples or forms that might lead to important work around understanding and preventing breast cancer or in moving forwards after acute treatment. The difficulty for me is with those studies that involve ongoing participation.

I appreciate that much important work can be done only through ongoing studies, but they also serve as an ongoing reminder.  When I'm down to just an annual visit each to surgeon and oncologist, 4 monthly, or even worse 2 monthly, tests of one sort or another are a less than welcome reminder of the problems that could arise. There is the anxiety that always accompanies waiting for results and even more when repeats are needed or problems, however minor, are identified.

At the moment I am (yet again) feeling somewhat ambivalent about the ovarian screening study. The study people are lovely, the work they are doing is extremely valuable and I have already benefitted from it. However, there is a very big "but", and that is that not only does it raise anxiety from time to time, it also makes it hard to get back to everyday life. So far I have had an ultrasound that had to be repeated, a blood test that triggered a request for a repeat and another that was problematic.

The study people generally present repeat requests in a calming way, but the hospital concerned is not always so considerate. Having said that, the hospital letters can, in retrospect, appear a bit comical! I received 3 letters about a repeat blood test.  The first, from the study, said that because of the variation between my first and second set of results, the computer needed another to establish what is normal for me.  Fair enough I thought, once the initial anxiety subsided. Then I had a letter from the hospital saying that because it was increased from the previous level it had triggered a request for a repeat and I might want to discuss the endometrial thickening with my GP to see if a gynae referral was indicated.  This was followed by another letter from the hospital to say that the (same) blood test reading was "the highest it has been for you" and that they needed to repeat it "just to keep an eye on things"! Oh but please don't be alarmed! Not surprisingly, my initial reaction was to be alarmed. One week the computer just needs further data and then two weeks later they need to keep an eye on things.

Then I stopped and thought about it. This was only my second blood test they were talking about - there was a 50% chance of it being "the highest it has been" for me! That third letter may have been alarmist but it was also vaguely silly.

It does, however, illustrate what for me is the drawback of being in the study. It can trigger a series of extra appointments and additional anxiety. As I wailed in an email to a patient friend "I just want my life back" rather than a string of tests and appointments. Fortunately Common Sense GP agreed with what Reassuring Radiologist had said and we decided that there was no need for a gynae referral unless I started getting worrying symptoms.

A part of me wants to come out of the study so that I don't have the additional tests and anxiety that almost certainly hamper my moving forwards. Balanced against that is the fact that I might derive benefit from it (although my risk is now assessed as being much lower than it was this time last year). Also weighing heavily with me is the fact that if people come out of studies like this just because it is stressful it can spoil the study - there is a psychosocial arm of the study looking at the stress element.

I've spoken with people who say that I should just think about what is right for me, weighing up the moving forward issue with the potential benefit without worrying about spoiling the study. I am mindful though that the study is now in its final year so it could be worth hanging in there for a bit longer. After all, finding a way to live with anxiety, appointments, risk and uncertainty is all part of learning how to live in the Land of New Normal.

Saturday, 13 November 2010

And another thing ...

As I mentioned previously, I needed to have a baseline DEXA scan because aromatase inhibitors can cause loss of bone density. So last week I toddled off to yet another hospital for this.  It was one of the easiest and most efficient appointments I have had and, having arrived 5 minutes early, I was actually seen ahead of my appointment time.  The scan itself was painless and quite relaxing, and I was leaving the hospital within 25 minutes of arriving - definitely a record.

Now this was one test/scan about which I was feeling confident.  A few years ago my mother had one and was found to have good dense bones, I do a fair bit of weight bearing exercise and although I bruise horribly when I fall doing things like curling, I've never yet broken anything.  It was therefore quite a shock to receive the letter from my oncologist saying that the scan had shown thinning of the bones in the spine and hip and that I should see my GP to start vitamin D and calcium supplements and discuss a weekly bisphosphonate. As my GP is on holiday I can't even book an appointment yet because of the fact that you can't book more than a certain period in advance (which seems a bit odd when the reason you can't see her before is because she is on holiday.) As I'll be at a conference when booking opens, I don't suppose I'll get one all that soon.  I suppose that gives me more time to research all the possibilities and compile my list of questions.

I did, however, find out that my GP has not received her copy of the letter nor the copy of the scan report. This might not be surprising in light of the fact that the circulation list on the letter names a GP who retired years ago.  This is a little curious because the letter after my check up last month was sent to the correct GP!  What is marginally surprising is that I received my copy of the letter, given that one of the eight mistakes in it is in my address...

This latest news puts me in a bit of a quandary.  Not long after my surgery I decided to cut back considerably on the amount of diary produce I eat and drink.  Although nothing is really proven, there is a theory linking consumption of diary with breast cancer.  While I had no intention of cutting it out completely (I think I may be addicted to cheese), I did decide it would be prudent to reduce it somewhat. Now I am less sure, as it would be a good natural source of calcium. I certainly don't want to go back to tamoxifen, because although some side effects are worse on Aromasin, I really do feel much better in myself on this than I did on tamoxifen.

Now that the initial shock and feeling of "what next?" has worn off, I am very pleased that another benefit of the switch to Aromasin was having the DEXA scan. Were it not for this, I might not have found out until it had progressed from osteopenia to osteoporosis.

Sometimes it seems that part of living in the land of New Normal is that for every few steps forward I take, I end up being blown back a step. The encouragement is that at least I am still gaining ground, just a little more slowly than I would like.

Friday, 5 November 2010

Anniversary Week

Two years ago this afternoon, on Wednesday 5th November 2008 (5th November isn't the sort of date you forget!), I received the phone call that confirmed the diagnosis of breast cancer.  I'd known for a week that they were pretty certain, and now the pathology results had confirmed it.  I was not only strapped into the roller-coaster but it was moving and gathering speed rather alarmingly.

I flung myself into a flurry of information gathering and question listing, even going so far as to google the name of my consultant, just to check up on his credentials.  I was reminded of this approach last week as I prepared for my final appointment with my genetic counsellor.  An appointment that took place exactly two years after being told that they were as certain as they could be pre-biopsy that I had breast cancer.  As usual I had my list of carefully prepared questions with space opposite each one to write in the responses and the discussions we had on the subject.  It all went very well and I emerged feeling good and with a couple of decisions pretty much made.

It was the genetics issue that rather derailed my Grand Plan for Moving Forward of summer 2009.  The fall out from the shock of the September discovery that I met the criteria for genetic testing (when all those around me were being told that they didn't) has meant that I have/will have spent the whole of 2010 waiting for tests or test results of one sort or another.  I don't find this at all easy.  In fact, I hate it when I feel that cancer is dominating my life, although I have hopes that next year the situation will improve and I do now feel that I am moving forwards again.  So the date of last week's appointment seems somewhat auspicious - the start of the next chapter, perhaps?

Another important landmark for me has been my involvement with Breast Cancer Care's "Moving Forwards" initiative for providing resources to those just finishing their hospital-based treatment.  It has given me the opportunity to think through what has happened, how I felt and how I coped, while hoping that some of my experience may be useful to others in a similar position.  For me, moving forwards is involving reflecting on the whole experience so far, trying to integrate it into my life and taking from it any positive points that can help me or other people to reclaim our lives.

This time last year I was in the middle of my first Major Scare, with pain in my affected side when I breathed in.  Imagination ran riot, of course, but it turned out to be just chostochondritis and wore off in a few weeks.

All in all, anniversary week this year has been positive - a good appointment, the thrill and enthusiasm of curling and the fun of the Moving Forwards photoshoot.  It goes without saying that it wouldn't be a cancer event without there being some uncertainty, and I am (of course) waiting for more tests/scans and results.  But when all is said and done I am pleased to be feeling that I am moving forwards again.

To all of my friends in a similar situation - here's to another year!

Sunday, 31 October 2010

Not All About Cancer

I have had a delightful Sunday afternoon throwing 20kg granite rocks across a sheet of ice. When I wasn't throwing them I was sweeping away far more vigorously than I would wield a broom at home (or anywhere else, for that matter)! No comments about broomsticks and todays date, please!

Curling is something that I have wanted to do since my school days but never quite got around to; and easy to put off because there are so few places in England where you can do it. And that is where cancer makes a brief appearance as I'm now much less likely to put off something I really want to do. So back in March I decided that my shoulder was sufficiently improved after the ravages wrought by radiotherapy and I was sufficiently motivated for me to put it off no longer, and I went along to a beginners evening organised by the South of England Curling Club.

I had a great time but it was only a taster and, of course, pretty much the end of the season by then and so I have had to wait until now to have a proper go. This afternoon the club held a mini bonspiel (curling competition) and said it would incorporate the beginners into teams with more experienced curlers. It turned out that there was only one beginner - so that rather hampered my team!

I think that one of the things that has always attracted me to curling has been the physics of it; stones curling, possibly hitting each other and then either stopping or moving off (m1v1 + m2v2 ... and all that). Now if physics was all there was to it I might be reasonably successful, but it also requires a sense of balance and a degree of hand to eye co-ordination, and unfortunately I'm somewhat lacking in both these areas. So if I got the weight right, I had problems with the direction or getting the curl correct.  And when I got it to curl properly I threw light - or occasionally heavy.  By the end of the afternoon I'd just about got the hang of it, but now I need to learn how to do a nice elegant sliding delivery. I'm no Rhona Martin!  Still, it was quite a compliment when one of the others said to me "your delivery may be far from elegant but that was a very playable stone and the weight was just right".

Fortunately, everyone is very friendly, encouraging and keen to help a beginner. I have rather bruised knees (I tend to topple over as I let go the stone!), but can't wait for the next time. 

Today was definitely a Good Day.

Tuesday, 26 October 2010

'Tis the Season

Once you are through the acute phase of treatment, appointments tend to be like buses - and I'm now in my appointments season.

Oncologist, UKFOCSS blood test and GP (new prescription) are down, and genetic counsellor, bone density scan, mammogram and surgeon are all to come between now and the beginning of December. And, of course, they are clustered round what is also anniversary season - being told it was probably cancer, confirmed diagnosis, surgery, pathology results.

Cancer treatment and early years follow-up at times can feel like a full time job; which is a bit of a problem when you have one already. It must be even worse for those who are working single parents.

In some ways it was easier to fit work and daily radiotherapy together than work and some of the follow-up. With radiotherapy, thanks to the very helpful staff at Mount Vernon, I managed to get most of my appointments at the end of the day.  That way I could go to work and then at about 3.4pm nip down the M1 and round the M25.  Of course, the journey home afterwards wasn't much fun and usually I just fell into bed once I got there.  But at least it was possible.  With a scan timed for about mid-day at a hospital 30 miles in the opposite direction from the office, work is a bit more tricky.  Then there are all the other things in life that I want time to do; such as sitting in the British Library getting excited about people who lived 500 years ago!

I am therefore very grateful that I work for a supportive organisation, with trustees who understand the problems of life, work and medical appointments. Hopefully, the appointments will thin out a bit more in the next couple of years.  In the meantime I will continue to juggle work, play and appointments thanks to my "page a day" diary.

Wednesday, 20 October 2010

Onwards and Upwards!

Last week I saw my oncologist for my regular 6 monthly check-up.  He was very encouraging, smiley and pleased with my progress and the way I'm healing. I, however, had a serious issue to raise.

I am in a screening study for ovarian cancer and my recent scan showed endometrial thickening, typical of that caused by tamoxifen (ovaries were fine, I'm pleased to say!). Now I haven't had any worrying symptoms but tamoxifen carries an increased risk of endometrial cancer and knowing that is having a thickening effect made me rather keen to switch to another drug.  Initially my oncologist wasn't all that keen on the idea of switching and pointed out that I only knew because of the study scan.  My line was that I do know about it, can't un-know and didn't want continue with tamoxifen!  Because I'm now clearly post-menopausal I can take an aromatase inhibitor instead.  I persisted and after a discussion he agreed to the switch with immediate effect.  So I'm now taking exemestane (Aromasin).

All drugs have side effects and exemestane is no exception.  It may cause more hot flushes and sweats and is likely to cause more joint pain and stiffness, but the most serious side effect is the potential to cause a loss of bone density.  For this reason I will now have a bone density scan to establish a baseline.

It is early days with the new drug, but so far so good.  I'm getting headaches and nausea but this is likely to settle down quite quickly. I had been taking a low dose of glucosamine and chondroitin and have now increased that in the hopes of dealing with increased stiffness.  This feels a very positive switch for me and I am much happier for having made it.  Study results for switching to exemestane are good, marginally better than for just tamoxifen in fact. So it was a good appointment and I left feeling both encouraged and that I had been listened to and my concerns taken seriously.

I will see my oncologist again in 6 months (already have the appointment), but if all is going well he will then discharge me and I will "just" have an annual check-up with my surgeon following the yearly mammogram.  An important landmark in the Land of New Normal.