Fixing Ali... a work in many parts.

Post moved to This and That - better place for it.
I've been off work for quite a few weeks now.  I've been seeing my GP and my therapist regularly. I've also seen Occupational Health. This all means that I've actually been working hard at getting well.
Recovery from mental ill health is most definitely NOT just a case of taking the pills and hoping for the best. Without a doubt the tablets have significantly reduced my anxiety and panic attacks. I can, once again manage things like getting a hair cut, or going to an unfamiliar place. If this surprises you, then I'm glad I've shared this. For me, being ill meant that I could not function at all. I had to leave family times early, take breaks from conversations with friends. The world became a frightening place.

When I first saw my GP, I was told to go away and do three things in addition to taking my medicine.

• I was not to think about work at all. I found this extremely difficult indeed. It was so difficult that I had to be signed off for a long chunk of time (months not weeks) in order to succeed.
• I was to take regular exercise. I was to leave the house every day at the very least. This took a lot of courage to start with, but I can now manage a 2.5 mile walk easily. My next goal is to change the route of my walk.

• I was to do something creative that I enjoyed. As I had already started making my Teeny Tiny Textile Art, I decided to continue with this and develop my skills. In this, I have been really successful and have opened an online shop here. To my total amazement and joy I have already sold six pieces in three weeks. 

How do I feel now?  I feel much better. I have some more work to do to rebuild my resilience. Through working with my therapist, I have realised that this mental ill health stemmed from years of blasting through five house moves, a career change, a divorce, a remarriage, life threatening cancer and bereavements on top of a stressful job and all that entails, without dealing properly with any of them.  I have also learnt that I can worry for England when I don't need to.  This new wrought Ali is still me, but I won't be taking responsibility that I don't need to take. I have been reassured that I am unlikely to become so ill again.

I have been building good relationships. I have taken opportunities to spend time with those I love. I have removed my self from harmful triggers and relationships. Shift has happened in the way I perceive things and in how I react to my triggers.  Mr G has been so completely and utterly wonderful that I truly know he is the other half of me, I could not have got so far without him.

Ali, then, is well on the road to recovery, and I say hurrah to that. Ali will, however, never be quite the same again, but I'm not sorry about that as she was very unhappy and now the sun shines once again.

Ill health...

Felled again. No, not cancer. It is what I believe is called psychiatric injury. I have been struggling for some time with panic attacks and anxiety. On Wednesday, I reached a crisis point. I could not go on being brave, coping, pretending all was well* (*delete as appropriate) How I came to this is irrelevant at present. I need to concentrate on getting well. Someone I greatly respect said 'Take your own advice' I am going to do so. So making pictures, reading, sewing for grandchildren and some cooking are all going to occupy me.

A year on.

I saw this today, and it led me to reflect on life a year on from completing treatment. The neuropathy mentioned in the article is what led me to stopping the paclitaxel part of my treatment. The neuropathical symptoms developed gradually from my first cycle of combined chemo. My fingertips first became numb, but feeling returned within about 8 days. I count myself fortunate that I told my Oncologist about this as it meant she reduced my next dose and enquired about it at my next appointment. When I reported, after cycle three, that I had tried to stand up but had fallen over as I could not feel the soles of my feet, she immediately stopped the paclitaxel.
The 4th of August marked a year since my last chemo. I reckon I'm as much over it all physically as I will ever be. I do still have enduring effects from my surgery and chemo.  I have proved I can improve my fitness and stamina this summer. I had a lovely unconsciously active holiday and have reaped the rewards in terms of strength and stamina. So what has remained affected?
The neuropathy still affects nerve endings in my bowel, my fingers and the soles of my feet.  The effect on my bowel is to affect sensation, it is very easy to become constipated unless I eat industrial quantities of fibre. Easily overcome but occasionally people look in askance at the number of dried apricots and prunes I can consume seemingly without side effects!

  Fortunately the effects on my fingers does not prevent me sewing or making my pictures. However I often discover I have repeatedly stabbed myself without always knowing I have done so.  My feet are often painful, the tingling of almost perpetual pins and needles often makes walking uncomfortable and sensible shoes a necessity. I have also been left with such bad 'restless legs syndrome' that both arms and legs are 'restless'.
I take gabapentin for the restless legs, and have been taking amitriptyline for fibromyalgia for several years. I believe that these both mitigate the effects of my neuropathy so that I am happily more free from pain than I might be.
I am and always will be extremely grateful for surviving. I am and, for the forseeable future will, live life to the full. I will also however always be living with the after effects of my treatment.
It does not end with that last chemo.

Genetic Testing.

A few months ago I had my first meeting with a Genetics specialist from Oxford at Northampton General Hospital., regarding a possible genetic link between my sister's breast cancer and my ovarian cancer. We were, she said, both 'young' to have suffered our respective cancers, I loved her immediately!  We chatted about family histories and such. There were , she said, some possible links (surprisingly to me though, no breast or ovarian cancers)  BRCA genes are tumour suppressing genes and help DNA repair, therefore when they mutate and stop doing this there is an much increased risk of cancer.

from ebeauty

I was given the rather bleak information regarding my outlook should I test positive for BRCA 1 or 2. Having already lost my ovaries did help, as my risks for breast cancer were halved, but remember I've already had ovarian cancer!  She said some women choose to have prophylactic mastectomies. I had already pondered this, and my decision was a definite NO to it. I would deal with breast cancer if it occurred. Anyway, as I had already decided I wanted to be tested, I went off and queued up at the Blood Taking clinic and dropped the sample off in outpatients for the specialist to take back to Oxford.
Today, my sister and I travelled to Northampton to get the results.
Our relief, when we were told that I did not have either BRCA gene, was enormous. I certainly felt that a weight had been lifted from me. I need no longer worry about how it might affect my daughter or my granddaughters.
Going to have genetic testing is not easy, there are many things to be considered, not least what one does with the information. I needed to know, I needed to find out.
Now I do know. The world is a wonderful place.

On people...

I read this, yesterday. I can honestly say that this is almost revelatory. The premise is that there are no 'difficult' people, only those with different agenda to us. I must say that the idea that no-one can make us feel bad, but that our response to them is what hijacks us, is not new to me. I have been working within that philosophy for a few months. Only a few months though.
Many years of my life were deeply affected by other people. Those others caused me to doubt myself, to view myself as unworthy, ugly, undesirable, inadequate, you name it I have felt it. However I realise now, I allowed it. Not what happened in childhood though. That I could not have changed, but I'll make sure no child I deal with will ever have me making them feel so bad.

I think that one needs to have a sense of self worth before the premise of differing agendas can really work. I have worked really hard for seven years to develop my own sense of self worth. I have had to unpick my own idea of myself and rebuild it. Being so ill for so many months actually helped. Losing my hair stripped me back to absolute basics. I learned to be glad just to be alive. The counselling I received also helped beyond measure. This was where I heard, perhaps believing it for the first time, that I, alone, was responsible for my own happiness. To create our own happiness has to mean making concious effort. It does NOT mean riding rough shod over others. Thoughtfulness, consideration and empathy will always be glue to relationships, personal and professional.
One thing that has surprised me is that fulfilling my own needs; to be creative, to meet my physical needs, to tend my emotions, does not lead to the death of a relationship. I had been persuaded in an earlier time to put those I lived with before myself at all times. Obviously, as a parent, I did put the needs of infant children before myself. What I did not need to do was put the needs of my spouse always before my needs. I did this for twenty six years, until I realised that I was disappearing, as a woman, as an individual. The crisis came when his pastime took precedence over my birthday. No compromise, just that it was more important than me.
It took me several more years to move on.
Now, I have started being creative. I have overcome tall odds. I not only write, but I make beautiful things. I read. I walk.
At last, I am a secure, happy, fulfilled individual who is not afraid to take risks, to branch out, to live.
I am Alison.

Another anniversary...

One year ago today I had my first chemotherapy session. I blogged about it at the time. In some ways much of last year now feels like a dream. In other ways, the normal things I am doing, feel like it is the first time again. I REALLY enjoyed my Easter break. We did nothing extra special really. We celebrated Mr G's birthday. We saw our wider family. However, I was not sore recovering from surgery, I was not forbidden any foods, I was not at risk of dangerous infections, I was able to live a normal life. It is VERY hard to articulate to those for whom this has not happened just how good it feels. The even more amazing thing is that that wonder at living a normal life does not go away. I even find that the less lovely bits of normal life, while still upsetting do not have as much effect.
I am very cross I have not got my house deposit back, and that I face a fight to try to get it back. However, it is not the total disaster it once would have been. Yes, I've cried, but no-one is going to die over it, I am not going to die because of it, therefore it is not earth shattering.
Life, post cancer treatment, is strange. For days and weeks, I can almost forget about cancer. Then something reminds me. A check up, a glimpse of an upsetting advert, even the reminders of the Race for Life I am doing. Then I am catapulted back to thinking about cancer. I think it will always be so. Maybe the adrenaline dump will lessen. I hope so, I do not enjoy that fight or flight lurch of my heart.

I do enjoy life. I love life. The ups and downs are there, but they are infinitely preferable to the alternative.

Listen to your tummy, Ladies.

I was sent this information by email from the USA but have decided it is worth adding to my blog. If it helps ONE woman to think hard about what is going on inside her then it is worth it!

Ovarian Cancer Whispers  

- so  listen carefully ...

Watch for  -

 Pelvic or abdominal pain or discomfort;

  Vague but persistent gastrointestinal upsets such as wind, nausea, and      indigestion;

 Frequency and/or urgency of urination in the absence of an infection;

  Unexplained weight gain or weight loss;

  Pelvic and/or abdominal swelling, bloating and/or feeling of fullness quickly when   eating;

  Ongoing unusual fatigue;

  Unexplained changes in bowel habits.

If symptoms persist for more than 2 weeks, ask your doctor for a 

CA-125 blood test, an internal exam and trans-vaginal ultrasound.

A smear test WILL NOT detect ovarian cancer.

I had all these symptoms but mildly. I was constipated, was peeing small amounts frequently, always totally exhausted, tummy getting bigger despite losing weight. I was having vague periody pains despite being well past the menopause. 

(I know... but at least I'm giving you the heads up!)

Ovarian Cancer is much more rare than breast cancer but creeps up silently. I would far rather you had tests that were negative, than you find out too late that you have advanced Ovarian cancer. I was lucky, that still unexplained post menopausal bleed I had saved my life. It got me to my GP who told me there and then that I would be treated as if I had cancer until it was proved otherwise.

Here I am, one year on, after surgery and treatment, fit and well.