Chapter 2 – Easter 2016 – Don’t Treat it Like a Stigma.

I will be writing more about my early years in a later chapter, today I am reflecting on more recent thoughts and feelings.

I recently read: 19 Things People Wish Their Friends Knew About Depression

http://www.buzzfeed.com/jamiejones/things-people-wish-their-friends-knew-about-depression#.qpKO6bGp5

Today I am considering the first of the nineteen:

Dont treat it like a Stigma

I have a few friend with whom I will talk about how I am feeling, my husband Ray is my person of choice to talk to with about it. My children are both in their twenties, but I still resist being honest with them, I don’t want them worrying about me. My mothering ‘protection instincts’ kick in, I just don’t go there. This may be counter-productive, they can probably see that I’m not doing great, but it is not easy for me to talk to them about it, so in a way I’m treating depression like a stigma too.

But what about others? If you ask me how I am in a polite, conversation starter sort of way, my response will not be genuine. I, along with many depressives, will respond that I am fine, I am unwilling to bare my true self to people who are acquaintances, or to work colleagues. I would not want to risk the possibility of a true and frank conversation about the state of my mental health for fear of their reaction. I am an expert at deception when it comes to my mental health, most people I meet are probably totally unaware of my depression.

There are many people who I have begun a conversation with, who just don’t ‘get it’, they have no real conception of what depression is, and that it often does not happen for a definable reason. I have had experience of being advised to see a Psychiatrist (tried that), getting Psychotherapy (tried that too), Cognitive Behavioural Therapy (doesn’t do much for me), and various holistic/alternative treatments, none of which have ‘cured’ me.

If depression were an illness for which one ‘outbreak’ produced antibodies to prevent it happening again, like Chicken Pox, or one which had an available vaccine like Measles, then yes, once you have recovered/had the jab, chances are it would never affect you again. Sadly this is far from the fact. For those of you that have suffered depression just once, or for those of you for whom it is almost a permanent state of being, the truth is that it is an individual illness, the range of suffering both in terms of severity and duration is enormous. It is as unique as your personality, which is what depression can mess with, temporarily or otherwise.

So how am I feeling? Over the past four weeks I have, under supervision from my GP, been reducing the dose of my medication. I have been taking 200 mg (the maximum allowed), for the past two years. It had been working for me until very recently. I will be on week five of gradual withdrawal tomorrow, down to 50 mg for the next two weeks and then back to my GP to discuss what to do next. Either try a different drug or see how I get on without.

January and February are always risky months for me, by the end of February phases of low mood were becoming more frequent and prolonged.

I knew I needed to see my doctor on the day I had the worst ‘black dog’ moment ever. In the past I have had thoughts of having ‘just a little accident’, some mishap that would mean I was confined to the house, giving me a justifiable reason to escape from the effort of trying to function normally, and making this effort is exhausting, really exhausting. I have never carried this through, preferring to take sick leave instead. But on this day, my thoughts were more extreme, they came out of nowhere, and were scaring me.

I thought about tablets, no, I’m too cowardly for this, what if I didn’t take enough? Using a kitchen knife, I hate the sight of blood, it makes my legs go wobbly and I get light headed and in danger of passing out, also I am seriously knife-phobic. I’m OK using a sharp knife myself, but if I’m in the room when someone is using knives or when Ray is sharpening our kitchen knives, I have to get out of there, it gives me the jitters.

I was home alone, working in my craft shed so what caused me to feel this way? I certainly didn’t choose these thoughts, I was in the middle of doing something I enjoy, but still the bad thoughts rose up and made their presence felt. I considered my options, I really had no wish to end my life despite what the depressive thoughts were trying to suggest. So, should I phone Ray (he was over an hour’s drive away), go and knock on a neighbour’s door, phone 111 or the Samaritans. I sat doing nothing for a long time, immobilised by my thoughts, eventually I decided to pick a physical task to immerse myself in. I had a mirror frame, one of the first things I had decorated, that I had never been entirely satisfied with, so dug this out to work on. I spent over an hour stripping off the decoupage and paint, I was able to totally focus on the task to the exclusion of all other thoughts. 

When I had stripped the frame back to bare wood, I had got over it, the suicidal thoughts had retreated. To pick myself back up, I looked through ‘Pinterest’ for inspiration and began working on a completely different design. By the time I had completed the new design, it was as if the destructive thoughts had never happened. This is it:

Mirror Frame Hand Painted

 

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A Shortish Catch Up.

Last time I wrote, I was about to go for an Ultrasound scan, physically, it was bearable, I did have an aspiration of the fluid, it was a little painful but not too bad. The fluid was sent for analysis and I heard today that it is nothing to worry about, apparently, the right side lumpiness at the excision site is caused by a thick-walled cyst and the fluid is as would be expected, so nothing to worry about. The area of discomfort away from the operation site showed nothing abnormal and is most likely a side effect of healing from Radiotherapy.

The emotional effects of having the ultrasound were further reaching, and this is why I have taken so long to write another blog. This is the only appointment I have gone to alone, as it was such short notice, Ray wasn’t able to get the time off to go with me.

Sitting waiting to be called, I looked around the busy waiting area, it was fairly easy to speculate by the expressions on their and their companions’ faces whether the women waiting were on their first call back, waiting to get biopsy results, for post-op or post treatment check-ups,. There was only one other woman on her own, I didn’t mind being alone, I kind of felt like a senior student observing the ‘newbies’ and more experienced students on the first day of the academic year.

I did not anticipate how I would feel having the ultrasound. I was totally fixated on the screen trying to see if the images were anything like those I saw when I went for the biopsies last September. The nursing staff assured me that there was nothing suspicious to see, but would aspirate the fluid to relieve the pressure. It was a little painful, rather like having a blood test, the nursing staff are so kind and compassionate, and they really took care to treat me kindly.

During the afternoon and evening I could feel myself sinking, having the ultrasound brought back all those feelings from when I was tested and diagnosed with Bi-Lateral Breast Cancer. It really knocked me sideways for the rest of last week.

The low mood was pervasive, I could not seem to shake it off and it made me doubt and question decisions I have made recently and unusually for me, to regret one of them in particular.

Josh’s girlfriend Liza, passed her driving test on Thursday, I was so pleased for her, we took them out for dinner to celebrate, I kicked myself up the bum and put on a happy attitude for the evening. But on Friday I felt just as low.

The weekend was good, Megan and I went to art journaling class on Saturday, I put all my feelings in to my journal, it was very therapeutic. On Sunday Ray cut the grass for the first time this year, the garden looks lovely now. I did some weeding between the patio stones and cleaned out and re-filled the bird feeders, something which I have been meaning to do for weeks. Being outside in the sunshine did me the power of good and I am feeling better now.

I have started to make a list each day of what I am grateful for after reading this post on Sue Fitzmaurice’s Facebook page: 

The Blues

Today I am grateful for a beautiful warm day, for a productive short-day at work, the colours of daffodils ranging from white to deep yellow and the tree blossom from white to cerise, for it being warm enough to have all my car windows open on the drive home, the smell of a bonfire, bringing back good memories of times in the garden where I grew up tending a fire of garden waste with my Dad, and also the scent of fresh mown grass, one of my most favourite smells and guaranteed to raise my mood.

Gratitude

A Much Better Week

On Monday I met with my manager to discuss my working hours for the next few weeks. I explained about my difficulties with fatigue and we agreed that I would work 22 ½ hours over four days with one day being a full day and the other three being reduced hours. This has made a big difference to my energy levels, I have had more energy and enthusiasm and my mood is more stable.

I have completed the tray I started several weeks ago and am happy with the finished work. In my lunch breaks I have tried to spend time outside, only retreating indoors when I felt too cold. I have been cutting out designs for decoupage, it is very therapeutic, one of my colleagues sat with me one lunch time, and remarked that watching me cutting out the shapes is very relaxing.

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I saw my GP on Friday and have a certificate for another four weeks at reduced hours, I am hopeful that I will soon be able to increase my hours soon but will just have to see how I am feeling. I will be pressing my employers to let me work part time permanently, I really want this so will be persistent!

I have been so grateful to be feeling better this week, the previous weekend had been hard going, Ray remarked that I was very down and this was making him feel sad too. There have been some mild days this week and I have become what my sister Nicola would call ‘a fresh air freak’ by taking every opportunity to have the windows open in the office, the kitchen door open at home and the sunroof and windows open in my car driving between the two.

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Seeing the daffodils, hyacinths and crocuses opening, cherry blossom on the trees, and lots of other signs that spring is here, make my heart sing. We didn’t get to see the Eclipse as it was very cloudy and missed seeing the super-moon for the same reason, but it is the Spring Equinox, the clocks leap forward next weekend and the days are lengthening, wonderful!

This a photo my daughter Megan posted on Facebook today, taken when she was taking Shadow for his walk, lovely blue skies!

 Megans photo 22 March 15

Ray and I are having our first weekend away since June last year, we have travelled to Kent to stay with my Sister Sharon and her husband Mike in their beautiful thatched cottage. The journey was relaxed, we didn’t need to rush and the weather was dry. On Saturday evening the Lions Group which Sharon and Mike belong to were having a musically biased quiz night, the four of us were joined by friends of Sharon and Mike to make a team of six. We didn’t expect to do well but after a fun evening with lots of laughs, and a sausage and chips supper, we came third out of nine teams, an excellent result we thought!

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This was also mine and Ray’s first social night out since last September, we really enjoyed the evening but fatigue hits suddenly and hard, we were both very pleased when it was time for bed.

This morning Ray and I went to visit our Nephew Andrew, his wife Hannah and their three boys, it is many months since we saw them and the boys have all grown, the twins had their seventh birthday earlier this month, their dad says they are already getting in to adolescent defiance and argumentativeness! The ‘Baby’ is now two and four months, he was very premature and had lost of struggles and complications but has pulled through it, he has the expected developmental delays of a prem baby but is now doing well and has made leaps in progression over the last few weeks. It was lovely to see them all, especially as it we don’t get to see them often.

Ray and I left in time to meet Sharon and Mike for a pub lunch and then we all spent the afternoon reading and dozing, the perfect Sunday afternoon!

Tomorrow Ray and I will be going to visit the newest member of our family who was born last September and his parents, our niece Sophie and her husband Toby. We haven’t met the baby yet as he was born just before I had my Breast Cancer Diagnosis, I’m really looking forward to meeting him, and seeing his parents too of course!

2015-01-29 07.55.55

Fatigue – Not Coping Well With Working Full Time.

After working part time for two weeks, this week I returned to working full days. Knowing that this would probably be too much for me I have booked one day each week as leave for the next few weeks.

Monday was not too bad, I managed to stay awake until bed time, Tuesday Ray and I should have gone to our Mindfulness Meditation Class but we were both feeling too weary to go out. Wednesday I went straight to bed and to sleep when I got home from work, I got up for dinner but really wasn’t up to much more than sitting in front of the TV until bedtime. Thursday was much the same.

Friday was my day off, being aware that exercise is beneficial for combating fatigue, and although still feeling rough, I made the effort to get out to the park with Shadow. We had a good walk, it was mild enough to go without a coat. When we got back home, I didn’t feel much better but gave myself a talking to and ventured out to Artys Art Shop to buy some more acrylics for my up-cycling projects. The afternoon was spent sleeping again, I did feel better for it and was lively enough to cook dinner for the first time this week.

I didn’t expect to feel this bad, I have had operations before and was able to bounce back to normal fairly quickly, last year I was off work sick for a couple of months with depression and was able to get back to work without too much trouble. This time it is very different, but then I suppose Cancer Treatment is a whole different ball game.

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Earlier this week, I read Sharon Green’s latest blog in which she discusses ‘Collateral Damage’, the untreatable side effects of Breast Cancer Treatment.

https://4timesandcounting.wordpress.com/2015/03/10/collateral-damage/

Sharon says:

“Dr. Susan Love published an interview on Medscape last week on the “collateral damage” of breast cancer treatments as reported by 3200 actual patients and not their doctors. She noted that doctors and patients often view things differently. For doctors, a living patient is the major sign of successful treatment. They don’t want to hear about treatment side effects that they can’t treat and cure, she says.

The patients and survivors are also happy to be alive but their quality of life may be severely impaired by chemo brain, depression, anxiety, fatigue, neuropathy, and hot flashes. She calls this collateral damage rather than side effects as often these symptoms are permanent, not temporary.”

In reading about the experiences of other women, I am beginning to understand that the long term effects of treatment can be with us for years or in some cases, permanently.

Although it is early days for me in terms of recovery, I am beginning to re-evaluate my life. I understand that all being well, the fatigue will improve, and my energy levels should increase, right now I feel that I am living to work, with very little energy to do much else.

I am keeping up with the post-op exercises but despite this, my shoulders and arms are getting stiffer, making some of the movements uncomfortable. I can manage the stairs at home, but there are more of them at work, my bones ache and I am short of breath when I reach the top. Weight gain is also an issue.

This weekend I have reverted to taking an afternoon nap, I have been plagued with a constant headache which may or may not be Tamoxifen related.

This blog is developing in to a moan fest, I feel that the impact of having cancer, and treatment for it has just started to hit home. As other women have found, I have been so caught up with the treatment process, now that this is complete, and my life is starting to return to what is was pre-diagnosis, I feel thrown adrift. Despite already being on anti-depressants, I am feeling low, attempts to lift my mood have not lasted. I wonder for how long this will go on.

I am fortunate to have two adult children, today I have read many posts concerning women who have not been able to have children and feel for them on this day that is so focussed on Mothers, Marie’s post ‘WHEN MOTHER’S DAY HURTS’ expresses how it is for her and for many other women.

http://journeyingbeyondbreastcancer.com/2015/03/15/when-mothers-day-hurts-2/

On a happier note, today has been better, for Mother’s Day, Megan, Josh and Liza gave me a beautiful bouquet, and three charms for my bracelet, Megan’s card was handmade and she had written lovely words inside. Today is also Ray’s birthday, we gave him a new driver and an electric golf trolley, he has just started playing golf again but is only playing nine holes, hopefully he will soon be able to manage a full round.

I had the house to myself for a few hours today, so did some more work on a tray I started two weeks ago. I have painted in flowers and glued on the decoupage design, I have still to add gold paint to the rim and then varnish it, I am pleased with how it has turned out.

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Now it is time to get organised for bed, tomorrow is a working day and I need to get up at 6 am.

Note to Self

Where does the time go?

It is now a week since I went back to work, I am doing half days for the remainder of this week and will be working full time from Monday. As the days go by it is getting easier, to begin with, my poorly eye suffered the most but it is now much improved and providing I remember to have frequent breaks from screen staring it does not get uncomfortable. I am tired, when I get home from work I often have an afternoon nap.

Saturday morning Megan and I went to our second Art Journalling class, this week we were working with collage, I’ve not done this since junior school and it’s not something I would think to do when I’m feeling creative. I started off with an idea in mind but as I looked through the magazines and papers, the images and words that appealed led me in a different direction. I’m not sure about the page, I didn’t enjoy it as much as the previous week.

 Art Journal 28 Feb

When we got home from Art Journalling, there was a lovely surprise waiting for me. My sister Nicola had seen an article on ‘The One Show’ about colouring for grown-ups, she decided to have a go at it and thought I might enjoy it too so ordered books for both of us. The book is called ‘Colour Me Calm’, the drawings are varied with plenty to choose from, I’m really pleased with it. When Ray went to the driving range on Sunday afternoon I sat with relaxing music on, my colouring book and pencils, this is my first completed page:

 Colouring

I came across this article on Huffington Post about colouring for grown-ups, the evidence confirms it is good for the soul!

http://www.huffingtonpost.com/2014/10/13/coloring-for-stress_n_5975832.html?ir=Parents&ncid=fcbklnkushpmg00000037

Tuesday was a very busy day, I started work early as I needed to be at The Lynda Jackson Centre for an afternoon of pampering with volunteers from the charity Look Good Feel Better (http://www.lookgoodfeelbetter.co.uk/)

It was a brilliant afternoon and if any of you ladies have had or are undergoing treatment for Cancer have not yet taken part, then I recommend that you do.

There were nine women plus four volunteer make-up consultants, each of us received a bag containing enough products to start from cleansing, through to being fully made up. The volunteers demonstrated how to use the products and how to apply our make-up, they were very helpful and encouraging. When the session had finished, we all admired each other’s ‘after’ faces, it does make a difference having the full works, we were all very happy with how we looked.

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I very rarely wear wakeup, but since LGFB I have made more of an effort, it is only two days and I can’t promise to stick with it but when I do I now know how to use it properly.

In the evening Ray and I went for our first class on Zenways Mindfulness Meditation, Ray has got back in to ‘work mode’ and is having trouble relaxing again, hopefully he will overcome this with practice. We are supposed to aim for a half hour meditation each day, we didn’t manage it on Wednesday evening but I have found an App with a Body Scan Meditation which is the meditation for this week so we will be trying this out later.

Tuesday was the busiest day I have had since diagnosis and I certainly feel it, I was very tired yesterday and today I’m feeling drained.

Wednesday was our last meeting for the HOPE Course, I feel sad about this as it has been such a pleasure being able to talk with a group of women who have been through Cancer Treatment. We have found that we have similar worries and problems and throughout the six weeks have grown stronger, more positive and better able to deal with our day to day challenges. I will miss seeing the five ladies on the course and also our two facilitators, but the good news is that a monthly meeting is being arranged, so I may be able to see my HOPE friends again and also meet others who have previously done the course.

This last week has whizzed by, I have been back at work for just over a week and have done so much else that the time has gone really quickly. I hope I can battle my way through this tiredness soon.

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Time to get back to writing

I have had a short break from blogging to give my eye a chance to heal, it has been two weeks since my operation and I will be having a check-up tomorrow morning.

It may seem strange to say that these two weeks have somehow been worse to deal with than the preceding three months. I think the reason for this is that this time the recovery was for a minor operation, I have not needed the same level of focus on doing the best for my recovery since there has been less impact on my day – to – day life. Also, the possibility of having further problems with the detached retina does not register with me as being as serious as the risk of having a reocurrence of breast cancer. So, if it were a worst case scenario choice between the possibility of losing the sight in one eye, or the risk of having a high grade cancer, I really do not know which is worse.

I seem to be feeling glum today, truth is I was expecting to be back at work today but I have contracted a rather nasty cold which has been making me cough, and my throat sting to the point of getting teary eyes. And the constant nose blowing has made me look like Rudolph. I’m feeling very sorry for myself, and have spent the day hibernating.

I have recently been giving a lot of thought to what my ‘new normal’ might be, what I would like to accomplish, how can I reach a balance between necessity and desire? There are so many experiences and activities that appeal to me, selecting what I would like on my ‘Bucket List’ is a challenge in itself.

For many years I have been searching for a Spiritual path which ‘fits’ for me, after many years of Christian faith, I found that it lost its meaning, there was something missing, I didn’t ‘feel’ it in my soul. Through my searching, a strong belief in both Goddess and God has cemented for me, but I have yet to find a path which appeals, how I express my faith does not fit with established belief systems.

Snuggled up in bed this morning, browsing through Facebook, on one of the pages “The Goddess Circle” I came across this:

“”My child,” The Goddess said.  “It doesn’t matter what you call me. Throughout the ages of time I have been called a million names, and I shall be called a million more. Goddess, Divine Mother, Sacred Feminine, Maiden, Mother, Crone, Shaman, Priestess. Just as you have so many incarnations within your own flesh each with its own deep divine thread, so do I.

We have the ability to be blossoming and re-emerging constantly in this and every life we have. The flow of what we are called is the same. Ever evolving, each one a part of the vibrant thread that makes up our own vivid tapestry” ~Ara “

Wow! These words really resonated with me, does it matter that I have no ‘label’ for my belief? No, it doesn’t. And is it necessary for me to dash about adding and ticking off things on my ‘Bucket List? And do I have to decide now what the plan is for the rest of my life, who I want to be? No, I don’t.

Maybe I can embody all the parts of me that hide within, and still be ‘me’, maybe I don’t need to be just one person. Maybe I can just celebrate all the different aspects of what makes me who I am with acceptance, and gratitude. And if next year, or the year after, I find a different way of being, and then after the passing of more time, my path leads in another direction, then so be it. Life is all about learning, growth, embracing our experiences both good and bad, these things touch our hearts and enrich our souls. Good night and Goddess Bless.

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Creativity – Make A Little Birdhouse In Your Soul

Time has flown since my last blog, and I have not been sleeping well and have not felt up to writing by the time we all sit down to watch TV in the evenings. Well, to be honest, I listen and glance at it every now and then between typing, it no longer holds my attention as it used to.

Last Wednesday was the first session of the HOPE Course, myself and seven women talked about our Cancers, our feelings, our families and our jobs, the marvellous thing being that we all understood each other. Individually, we had shared the fears, pain, stress, worry in any or all combinations and more. To be able to speak and share together is tremendously healing.

For part of the session, we talked about Gratitude, and were given a sheet to complete for each day to record what we are grateful for and why. This is something I had planned to do but haven’t, I was hoping the sheet would give me the motivation to write something for each day but I’ve not managed it, but I am not going to chastise myself over it.

We also thought about setting ‘SMARTER’ goals:

Specific – Am I clear exactly what my goal is?

Measurable – How will I know when I have completed my goal? What does it look like?

Achievable – Can I really achieve this task? (Don’t set yourself up to fail!)

Relevant – Is the goal important to you?

Time-Bound – When do I want to have reached my goal?

Enjoyable – Is my goal enjoyable?

Reward – What reward will I give myself when I am successful?

Each of us chose a goal for the coming week, mine was to start and complete a small craft project, specifically to decorate a miniature MDF Birdhouse, and I am happy to report that I have achieved my goal!

This is the blank birdhouse:

2015-01-27 16.22.01

It is a first attempt, I experimented with some stamping inks which I thought were solvent based, turns out they weren’t, so when I painted the varnish over the print it ran. Fortunately, I had only used this stamp on one area and was able to wipe it off and then re-apply using the solvent based inks I had used for the remainder of the project. But I am encouraged to do more crafting, I really enjoyed the sticking, stamping, painting in the flowers and varnishing the little birdhouse.

And this is the finished project:

2015-01-27 16.23.04   2015-01-27 16.22.52  2015-01-27 16.22.37   2015-01-27 16.22.23

Creativity is something I aspire to immerse myself in, but I seem to spend more time looking for ideas in Pinterest than actually working on a project. One of my goals for this year is to give myself time to work on crafting and sewing, I am hopeful that this is an achievable goal.

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Although still suffering from fatigue, generally speaking, I feel much more myself, more mentally alert than I have done for some time. My skin is working its way through the healing process, the redness has progressed to looking more like a dirty sun burn, and has started to peel.  The random stabbing pains in my breasts can be troublesome at times and sleeping varies from uncomfortable through to painful. If I lay awkwardly in my sleep, it can take a while for the pain to subside, sometimes I can’t find a comfortable position for my arms, this is all quite normal after treatment for breast cancer, but that doesn’t stop it being frustrating. I carried too much the other day and suffered for it during the night, a lesson learned in moderation, just when I feel I should be healed enough, my body reminds me that I am not.

Ann, who leads the relaxation classes at the Lynda Jackson Macmillan Centre is qualified in lots of therapeutic things including Yoga and is also a retired Nurse, made me feel like a naughty child last week for saying that I was planning to go back to work in a few weeks. She says I shouldn’t rush back, should give my mind and body plenty of time to come to terms with the Cancer diagnosis and treatment, this has been a recurring opinion from many of the health care team I have seen over the past few months. I told Ann it felt like I was being told off by my mum, what I didn’t say was that like my teenage self, I will do what I feel I have to do and return to work part time in two weeks’ time anyway. I will do what I can, I may surprise myself and hit the ground running, or I may struggle with lack of concentration and with fatigue, time will tell.

I do worry about the concentration issue, as with all breast cancer patients, to keep my chest, shoulder and arm muscles and tendons supple I have a thrice daily exercise routine, the practice for these is to do each exercise five times, and some to a count of ten. Sounds simple doesn’t it, but I cannot manage to count to ten and also remember how many repetitions I have done. I start off OK, I can count to ten but then my mind wanders and I forget where I am up to with the repetitions.

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Today has been a bad day, low energy and what started as a low grade headache has progressed to a full blown one, with tense shoulders and neck to go with it. I have the second session of the HOPE Course in the morning so I’m heading off to bed with some painkillers and hope for the best that it will be gone when I wake up.