Am I still in denial?

On the basis that I'm coming up to the 2 yr "anniversary" of my mastectomy, it seems rather odd to think that I might still be in denial, but I'll describe the circumstances that are making me wonder whether it might be the case, and let you decide.

I've been having some pain in my neck and shoulders for some time and finally got time to go and see my chiropractor last week. I ended up having acupuncture* and some strapping put on to help stretch the muscles (very attractive), and left feeling much better.

*Acupuncture???? Wow - chemo is good for something - I used to be terrified of needles!!

Anyhoo, I got home in time for supper and naturally both children were curious as to why I had black strapping on my neck and shoulders - visible even with clothes on!

The words "So mummy. What do you have, exactly?" from the eldest completely flummoxed me. All I could think about was bloody cancer, although I hope to high heaven I don't have it any more. 

I'm so pathetic - I welled up and couldn't answer the question!

Fortunately, my husband was there to give the obvious answer "sore muscles which have given mummy a bad back", to question number one, and also handled the follow up from the smallest child which was "what are your pills for?". Painkillers, on this occasion, but I do occasionally get quizzed on why I'm still taking pills. (Tamoxifen and Perindopril).

Ridiculous. Given that I should be far stronger than this by now, I'm a bit ashamed of myself. 

I have no idea whether I'm still in denial, or was just having a bad day, the fact that at some point I might have to tell my children that I have had cancer absolutely terrifies me. 

Cancer is still a very scary word and some days, living under the threat of it returning is just too much to take.

Frozen

When I say "frozen", I am of course not referring to the film. If you have escaped watching the latest creation from Disney, then I shall assume you haven't got children. Not that it is a bad film. In fact [whispers] it's actually quite good, but the songs just produce ear worm after ear worm.

What I mean by "frozen" in this instance, is my inability to blog for the last few months.

I have written this in my head several times, but for some reason never managed to get to the iPad and get it down on paper, so to speak.

Since January, we have been okay, all in all, but, and I can say this now I think I am coming t the other side of it, but I have been very down in the dumps, to the extent that I have probably been heading towards depression, and I don't say that lightly.

I have continued with the gynae investigations, which so far have shown that everything is okay, however the issues that I have been having haven't gone away completely, therefore my consultant is quite keen to try and get things properly sorted out, which I am very grateful for. Apparently Mr Morris doesn't like mysteries any more than I do. So, long story short, I have another procedure coming up in the next few weeks to have a better look, shall we say, and hopefully I shall have some answers after that.

So, that has been a bit stressful.

I have also had some genetic testing done to establish whether or not I have a BRACA 1 or 2 defect. The testing started with a probability analysis, which was higher than I thought it would be, as I thought we had a fairly weak family history, with just my grandmother having had breast cancer. As it turns out, prostate cancer can be the sign of a BRACA carrier in me, and as my uncle had prostate cancer that increased our risk as a family.

So, I have had the blood test and I am delighted to say that at present time, they can find no BRACA default, therefore we might be clear from that worry. Unless it is another genetic factor that hasn't been discovered yet..... Best not to worry about it now right?

What else? Oh yes, the small matter of having completed all of my remaining Herceptin drips, all 17 in total, which I have been amazed at. With my heart issues I never expected to manage it, but I guess the Perindopril must have done something right!

I was very emotional at my last one, I must say. What was particularly poignant to me was the fact that one of my chemo nurses got married and became pregnant whilst I was there, and when I left, she was nearly full term. It was a very vivid indicator of the effluxion of time, and a good reminder that life goes on regardless.

I do miss the fabulous nurses, but not the trips up to hospital. I really hope to never have to set foot in the chemo ward again.

I have also been considering reconstruction over the last few months, and had an initial meeting with my plastic surgeon, which went well and we even had a date booked, but I chickened out a little bit, and was waiting for the genetic testing results before finally committing to the operation, so everything was put on hold. I do have another meeting booked for 10th September, so be prepared for some venting of thoughts on my blog in due course. Seriously, I can talk myself in and out of the procedure on a daily basis, such is the state of my confusion and indecision.

On another positive note (isn't it lovely that there are so many?) I managed to complete the Paris marathon in April in 5hrs 50minutes for Walk the Walk, and the Moonwalk in London, during the wettest weekend in May I have ever seen, in a slightly slower time (due to queues on bridges and bad conditions) in 7 hours. My lovely husband joined me for the Moonwalk, and it was fantastic to complete such a challenge with him. He may slightly regret saying to me that he would be curious to see how fast he could run a marathon, as I have applied for places for us both for the London Marathon next year!

I must say, that both challenges were just that, challenging, but I am very proud of the fact that I did them both within a month of each other.

Family wise, everyone is very well. My daughter finished her first year of school and, mostly, had fun, and my son is still as boisterous and full of energy as ever!

My lovely husband is still just that, despite having a tough year coping with me and hours of marathon training, and his brother having marriage issues that have resulted in his mother going to lice in Australia on and off for the next 2.5 years to help look after one of her grand children. I will extrapolate at a later date.

So. All in all, lots of positives. I have been exhausted over these last few months which is normal apparently, but also possibly down to being slightly anemic too which my GP diagnosed a couple of weeks ago. I'm waiting for the tablets to kick in and looking forward to having more energy and a bit of my old bounce back!

I think I'll leave it here for today, otherwise I'll still be writing in an hour's time.

Besides which. I need more coffee. 

Have a fab Bank Holiday weekend, and I promise I will write again soon.

I shall leave you with a photo which will hopefully make you smile!!

My children and I, and me with some hair, the day before I did the Paris marathon!

Happy New Year!

Wow. That came around quickly, didn't it?

I'm still here, plugging away.

I've been rather down though, as it happens. I am told it is normal and to be expected, but constantly being on edge, not sleeping and being weepy at the drop of a hat is a little annoying.

Lots has been happening, which explains my absence I hope.

Alex's funeral was heartbreaking, much like Claire's earlier in the year. Another full house I am pleased to say. An uplifting ceremony in the church that she was christened in only 30 yrs ago. Dammit, it isn't long enough.

So, I said that lots has been happening. 

Well, we all survived Christmas.  The children were lovely, most of the time, and it was great to see my parents.

I have had one or two things of a gynae nature checked out which appear to be side effects of the tamoxifen. I had been hoping that it was early menopause (never thought I would say that!) but apparently not. Hey ho. One more simple procedure, and hopefully things will start righting themselves. The only plus side of the whole thing is meeting another lovely consultant, who is mad keen on antiques, which meant that he and I had lots to chat about.

I have survived my last two herceptin drips, which means I have five left. The end is nearly in sight. I have an echocardiogram booked for 10th February so some positive vibes on that date would be much appreciated!

I had a couple of issues with my port last time which is worrying me in advance of next weeks drip. It was really hard to get blood out of the port which was scary. Everything seemed to go in okay, but although the nurse was trying to play it down, there will be ramifications if things don't improve next time,

I seem to have loads of appointments booked at the minute. Genetics tests, cardiology appts, treatment, updates with my consultants, and a session with a psychologist to boot.

Long story short I am a little stressed, and I really can't make up my mind about reconstruction so it's time to seek help. My poor brain has had enough and I am fed up of living in fear, so I need to come up with some coping strategies and work out a plan for 2014.

I have signed up for the Paris marathon in April (walking), and the Moonwalk in May so the training for both of these will keep me occupied. 

Putting one foot in front of the other seems to be about all I can cope with just now.

What a roller coaster......

Following Wednesday's hard hitting news, I found myself in rather a glum mood on Thursday and Friday, which wasn't too surprising really. My Onc Doctor rang on the Thursday and expressed his concern about my results, advising me that he was going to speak to my cardiologist but had cancelled my treatment......

I had an appointment for work in Southwold on Friday morning and, I will freely admit, I sobbed most of the way there. 

I picked up an answer phone message when I arrived at the property I was visiting, which was from my oncology consultant. Apparently there was a "big" inter-departmental meeting about me on Friday morning and lots of people have reviewed my echocardiogram. What it is to be popular.

The result of that meeting is that they have decided that while my EF has dropped, it doesn't seem to be as bad as they first thought, and is above 50% at least, so I can continue with treatment. 

I am of course delighted, but terrified in almost equal measure as things still need to improve heart wise. At least after next Thursday's session I will be half way through it. 

Talk about stress though. It would be so nice just to have a quiet week, with nothing more to worry about than whether we can get the children to school and nursery on time or not. 

So, I shall start again next week, hopefully on a more positive note and try to keep my terror under wraps. 

Thank you all for the positive vibes and kind messages. They are hugely appreciated.

First hair cut, but also some more serious news....

It isn't that slow a news day, (sadly I have more to tell you) but I thought I would give you the exciting news that finally, my hair has grown enough that it was worth getting it cut and coloured. I now look far less like I have been dragged through a hedge backwards, and look far more respectable. I have had lots of people tell me how much it suits me, but I am not convinced! For now, it will do and the fact that it is all growing back nicely and that I even have some eyebrows and eyelashes is enough.

Sadly, a seriously amazing lady that I met last year and who has inspired me throughout my treatment died last week, at the age of 30. I am still in shock actually. Last time I saw her she was eventing, despite being in immense pain. It seems to have been so quick. The funeral is next Friday, 22nd and fortunately I have been able to rearrange cover for my auction in order that I can go. Whilst I didn't know Alex that well, her attitude and ability to be positive was just astounding, and I will strive to be more like that.

However, after having an extremely long day today I am really struggling with that positive mental attitude. 

I had a good session with my plastic surgeon and have, potentially, booked my reconstruction surgery for the end of May next year. This should coincide with the end of Herceptin, so my portacath can be removed at the same time.

Unfortunately, I got some news this morning which has made me feel less excited about the surgery, and more well, downhearted. 

I had an echocardiogram to check my ejection fraction, as I have had several times before, only this time, we found that it has dropped to below 50%. Well, in fact it is 48%. 

I don't yet know what the full ramifications are yet, but it is extremely unlikely that I will be allowed my next treatment which is scheduled for next week. I sure that I will skip one and had a six week gap but I am not sure and won't know until I see my oncologist next Wednesday. I should have seen him today after the echo, but put him back to I could see the plastic surgeon. Whoops. 

I am trying not to panic. I have had 8 Herceptin drips, which is virtually half, but I am not sure how much this will alter my prognosis. I am not the first person this has happened to, nor will I be the last but I had so hoped it wouldn't happen. 

Frankly it is bloody scary.

So, until I have seen my consultant next week I shall remain active, but possibly slow down the power walking a bit which is annoying as it had been going really well..... Priorities though. There's plenty of time for training later......

Going full circle

I should probably apologise for the lack of recent blog posts, but you're used to how sporadic I am by now, I hope!

Yesterday was a weird weird day. I had a check up with my lovely surgical consultant which was, shock horror, the first of my annual checks. 

Annual.

Really.

How it can be a year since I started chemo I've no idea, which seems to be a recurring theme. Not only do I have no idea in general (or so it feels sometimes) but time marches on regardless, which is a bloody good and very timely reminder that I shouldn't just be a passenger on this journey, I should make sure I make the most of every opportunity.

Anyway, I digress.

My surgical consultant is still fab, and his sense of humour is undiminished which is a very good thing. He is happy that there are no new lumps on my remaining side and is delighted at how good my scars are, and that the use of my arm has not been affected by the lymph node removal.

We had a good long chat about the fact that my ovaries are working again (dammit) and what to do about it. We had both hoped that I would go into early menopause which would rule out the need to think about ovary removal....

Further to a chat with my oncologist recently, we decided to go down the route of genetic testing to ascertain whether I carry the BRACA hereditary cancer gene. If I do, then ovary removal/suppression would possibly be a good idea.

It was quite interesting to compare that chat with the oncologist to the one with the surgeon yesterday, as the latter was far more positive about ovary removal than the former. Perhaps it's the typical surgical approach? I don't know, but removal if the BRACA gene is present seems like a sensible option to me.

We also discussed reconstruction and secondary mastectomy, and I have been referred to the Plastic Surgery department, and to the surgeon in particular that I wanted to see, so that is good, and a positive step forward.

Whilst I am still in several minds about reconstruction I definitely want to consider all the options so we are heading in the right direction for sure. 

Things have been going okay recently, but it is fair to say that my husband and I are in dire need of a holiday. The stresses of the last year are starting to come out and it is fair to say that neither of us have ever been so tired.

I have been struggling with work recently. I have very little tolerance for stupidity and annoyances, which is not always ideal when dealing with staff and the general public! So, at the moment my time in the office is flexible, which has helped a lot this week and I am starting to feel less strung out, and my attention span is also better. Still, I think a proper break away is going to be the only thing that really has a chance of helping us. Quite how to go about it I do not know. Taking my oldest child out of school will be much frowned upon, so we will have to see what can be arranged.

All in all,methinks are okay. My hair is growing well and I have hopes that my ears might be covered by Christmas!

Seriously, where does time go?

Life in the fast lane makes time go faster I suppose! We certainly have been extremely busy over the last few weeks.

I had the privilege of going to Claire's funeral, which was horribly sad, but one of the most touching and uplifting services I have ever been to. It was standing room only at the crematorium and a fitting tribute to such a wonderful woman.

I survived my second Herceptin, which went fine despite the queries and debates over time needed to give the infusion! Hopefully by the time I have my third one, which is Thursday this week, all the departments of the hospital that have a say in my care will have decided how long it will take. I wasn't too worried about having to sit down for 3 hrs last time as I had just sent two days at our county show with my daughter and her pony, so I really needed the rest! 

We have also been on holiday to France for two weeks, which was lovely if rather hot! The children had a lovely time and things went quite smoothly on the whole, apart from the trip back. We crossed France with very few issues, but on returning to England were met with the chaos that is the M25 and it took 6 hours to get back from Portsmouth to Norwich.... still, a change is as good as a rest, and we have stocked up the wine rack somewhat!

Rather incredibly, I note from my diary that I am approaching an anniversary of sorts. A year ago I went to the doctor for what I hoped would be a reassuring chat, and on 1st August I found out that I would have to have a mastectomy, although whether I had "proper" cancer was still unknown.

It is truly scary how much life has changed over the last 12 months. In some ways it has changed for the better, but on the whole I feel that I am nearly unrecognisable, and not just physically!

I'm not sure how I feel about this anniversary, and not sure how I'm meant to feel about it either. Happy to be alive obviously, but I am still so confused as to how to live life to try to avoid this happening again that sometimes I feel totally swamped. Tired. I certainly feel tired and drained by it all.

Anyway, now we're back from holiday I'm going to throw myself into organising the charity auction which, no doubt you'll hear all about in due course! 

For now though, I really think I ought to go to bed. It has taken me forever to write this rather short and probably boring post, and I think I ought to at least attempt some sleep before my youngest decides it is time for a "great big cuddle", which is one of his favorite phrases at the moment! Just as well he is so cute.....