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:

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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:

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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.

The Three Principals (via Avaaz)

Avaaz is a campaigning site which organises petitions and action to give people a voice, this is what they say about themselves:

Avaaz—meaning “voice” in several European, Middle Eastern and Asian languages—launched in 2007 with a simple democratic mission: organize citizens of all nations to close the gap between the world we have and the world most people everywhere want. The Avaaz community campaigns in 15 languages, served by a core team on 6 continents and thousands of volunteers. We take action — signing petitions, funding media campaigns and direct actions, emailing, calling and lobbying governments, and organizing “offline” protests and events — to ensure that the views and values of the world’s people inform the decisions that affect us all.

Recently, on their web site, they had a New Year Pledge campaign called ‘The Three Principals’ which are:

  1. Show Kindness and Respect: We will show kindness and respect towards ourselves and others whenever possible. And it’s always possible, because everyone we meet is fighting a battle we may know nothing about.
  2. Strive for Wisdom: We will seek to be wise in our decisions, listening deeply to ourselves and others, and balancing our heads, hearts and intuitions in a harmony that feels right.
  3. Practice Gratitude: We will regularly reflect on what we’re grateful for, because it brings perspective, dissolves negativity, and grounds us in what’s most important.

These are the principals by which I like to live my life so I have joined the programme and hope to maintain all three throughout this year and beyond, particularly the principal ‘Strive for Wisdom’, heaven knows, I can do with more of this!

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I covered ‘Kindness and Respect’ very briefly in my previous blog, so have been thinking about ‘Wisdom’ today.

In writing this blog I have been collecting wisdom, from the women who follow my blog I have learned a great deal about the big issues surrounding this disease and also the little issues, and the things which keep us going, that sustain us through the bad days. Reading about the experience of other women with Breast Cancer has taught me much, and for this I am grateful. Even though I am unlikely to meet any of the women in the blogging community of which I am a part, I count them among my friends, we are sharing an experience and sense of companionship during what is a difficult time in our lives. Our Cancers may be at different stages, require different treatments, but we have the same goal, to share our experiences and to hope that someone may be helped by reading about them. Most importantly, to know that there are other women out there across the world who understand how we are feeling because they are going through similar issues right now, or have ‘been there’ and made it out of the ‘chaos’.

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Over the last few years I have moved away from the Christian Church towards Earth Centred Pagan beliefs, I am not yet settled in a particular ‘Path’. I do still believe in Jesus, and God, but do not believe God was a single parent, the Goddess is very important to me and is my principal deity in all her dimensions.

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Whilst learning about Pagan ‘religions’ I have been to numerous events, courses, classes and workshops. One course was training to be a ‘Sister of Avalon’, learning to be a Priestess of the Goddess. For eight weekends over the course of a year, I travelled to Glastonbury to join my fellow trainees, we were a group of twenty, one man and the rest women. The most significant thing I learned from this experience was that sharing our troubles and difficulties within a small group was immensely healing. For a short time each weekend, we divided in to groups of four, using the ‘talking stick’ method of sharing, the Wikipedia explanation reads:

‘The talking stick, also called a speaker’s staff, is an instrument of aboriginal democracy used by many tribes, especially those of indigenous peoples of the Northwest Coast of North America.’

In practice it means that the person holding the stick (or any other symbolic item) is the only person allowed to talk. Our group sessions were structured so that each person had a set amount of time to speak whilst their three ‘sisters’ silently listened, when the time was up, a bell was rung, and the stick was passed on to the next person. The subject/question we were to talk about was given to us by our tutor, they would be quite meaty issues, the topics and the words spoken about them could challenge, and sometimes bring the speaker to tears. The ‘listeners’ were not allowed to interrupt, offer advice, ask questions or to physically comfort the ‘speaker’. We were allowed to talk more together about any issues which had come up in the session during our lunch break, or at the end of the day. By doing this, each of us had time to consider what had been said, and decide if words of advice might be worthwhile, or if a sympathetic hug was what was most needed. Often a hug was all that was needed to convey our understanding of, and respect for each other.  

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Once I got used to this system of sharing, I came to appreciate the beauty of the silent love, acceptance, and support in my group, and this is truly a wonderful thing.

We were four women with very different lives, upbringings, expectations and desires, but this made absolutely no difference to the high regard in which we held each other, a feeling which grew over the year we spent learning, sharing and working together.

There were occasions that we gathered with our ‘sisters’ to create crafts related to the Wheel of the Year, these could be ‘talking stick’ times or times for silent meditative working. There is such a sense of joy in creating with women who have become dear to you, the feeling of companionship and sisterly love grows stronger with each task. I imagine our ancestral mothers would have felt the same as they worked together, sharing skills, stories, song and wisdom.

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In our modern society, many of us have lost the companionship and support of our families and neighbours once enjoyed when we lived as members of a tribe, or small community. When we needed help with problems and challenges in our lives, we didn’t need to search the internet, all that we needed was to be found in our tribe, the wisdom of our elders was there for the asking, and their life-learned knowledge treated with respect and reverence.

Many times in my life I have found myself thinking that several trips to the doctor could have been avoided if I had the resource of experienced, older women to take my ‘women’s problems’ to. Somehow ‘Internet Forums’ don’t quite do it for me, I do now have the benefit of one wise friend who has a diverse knowledge of life and shares a similar faith, and for her I am so thankful. I also have my two sisters and friends who support me ‘virtually’ and in person and they are very precious to me too.

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I think this ‘community of women’ is a deep seated need, I have been searching for my ‘tribe’s women’ for most of my adult life, and maybe now I am finding them.

This time last year I wanted to begin a ‘Women’s Spiritual Sharing Circle’, unfortunately, I never moved from the ‘want’ to the ‘action’ stage, but then maybe the time wasn’t right, it was at this point that I developed Clinical Depression. The Circle is still ‘on the back burner’ I would love to be part of a group, if it means I have to set it up myself then bring it on! All I need is a small group of like-minded women to join me and we’d be off! Don’t worry, there will be no nudity, I just liked this photo and the text!

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In the hope that some of my local ‘readership’ might be interested, here are some links which will give you an idea about how a group could work:

http://www.essential-wisdom.com/womens_circle.html

http://awakeningwomen.com/2010/01/31/awakening-women-global-sisterhood-manifesto/

The first link is more detailed about the circle, the second contains excellent principals.

So ladies, if you would like to join, get in touch with me and we can get ourselves organised. 🙂

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Sore Nips and Weariness

So how are things? Well much the same really, both Nipples are sore and have random spells of having sharp pains. The burning on my skin from the ‘Radiotherapy Booster’ sessions is clearly visible on my skin, both sides. You can probably see the square redness from the Booster beam in the photo.

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It is getting more itchy and flaky now which is a nuisance, but not as much of a nuisance as the hot flushes which are annoying me now, I can feel the heat building in my back as I sit writing this. I have now given in and stripped off my shirt, I seem to be spending more evenings wearing just a vest and skirt/trousers, it feels like being in the tropics!

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I have needed to have an afternoon snooze for the last few days and have slept well at night time so I must be needing it at the moment. I wonder how long this will go on for, I would like to be back at work, and I’m beginning to miss my colleagues and thinking about my work building up, so I hope this weariness goes away soon.

It is frustrating feeling so lacking in energy for a fair proportion of the time, still I will reach the two weeks post Radiotherapy point on Wednesday, so in theory I should begin to pick up, I certainly hope so.

This week I will be beginning a six week HOPE course (Help Overcoming Problems Effectively) at the Cancer Centre, one of the topics on the programme is coping with fatigue, this will be very welcome!

On Saturday we went to Hemel, Megan needed to return a bracelet we gave her for Christmas as it had a faulty clasp. When we pulled up in the car park, a man approached us asking if we could spare him some money for his bus fare to Aylesbury as his mum was ill and he wanted to visit her. He explained that he was homeless and had no spare money, I can hear the cynics shouting ‘it is a sob story, he just wants the money for booze/drugs/cigarettes’, but we all felt he was genuine, he wasn’t drunk or stoned. Ray and I agreed we would give him the money for the bus fare, someone very dear to us has been temporarily homeless and we understand how awful this can be. I feel very strongly about how many people in our communities are suffering as a result of government policies, I can get really angry about it, so I’m going to leave it there.2014-09-05 13.25.01

There are so many things I would like to do this year, I’m just waiting for sufficient energy to get started. Megan and I have enrolled on an Art Journalling Course which begins in Mid-February, I am looking forward to the course especially as Megan will be doing it too. I have all these art and craft materials stored away just waiting for me to have the motivation to make a start on something.

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A Trip to the Eye Hospital

Today was Pre-Op Assessment day for the removal of the Scleral Buckle in my left eye. I had my blood pressure taken from my leg for the first time, the cuff went round my calf muscle, it was a little uncomfortable, I felt like I was about to get cramp, but it was all done quickly and as I will be having local anaesthetic there was no need for blood tests. The operation will probably be in February but I have been put on the ‘Short Notice List’ so may get to have it sooner if someone else cancels. So after a remarkably short visit Ray and I set off home.

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It was a beautiful sunny morning, we were very surprised to see Daffodils blooming on one of the grass verges! It seems very early to see Daffodils in bloom, I just checked on the RHS Website and they say that the flowering season is February to early May. So they are early, it is lovely to see the first signs that Spring is on the way. I am looking forward to seeing the lambs, they are simply lovely!

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I have been thinking that I have been rather unfair to my right boobie, in a previous post, I said that my left breast was being the ‘perfect patient’, however, its halo has slipped somewhat over the last few days. It is on this side that the blistering has been causing a problem. When I changed the dressing this morning, the skin over the first blister came away with it (sorry if this is too much information), I also noticed that there is a new blister on the Areola, ah well, only a few more weeks and it should all be healing up. Even with the twice daily moisturising regime, my right breast has started to peel, I certainly wouldn’t make it through an audition as a glamour model! Just as well I have never aspired to bearing my body for profit 🙂

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After lunch Ray and I did some tidying in our sitting room, it wasn’t that much and didn’t take long but it exhausted me. I went for a lay down and slept for three hours, when Ray brought me a coffee at 6:30 I was completely disoriented. I woke thinking it was Saturday morning and noticing Ray was dressed said to him that he was having his hair cut today! Ray looked confused, I then realised that it wasn’t morning or Saturday either! Oh dear, Ray does have a haircut booked on Saturday, so at least I got one thing right! This Radiotherapy fatigue is messing with my head, well that is my excuse, and I’m sticking to it 🙂

Today seems to be a ‘hot flush’ day, I have days like this, there doesn’t seem to be any regularity to them, it is very unpredictable. I have stripped down to my vest top (not back to wearing a bra yet, and won’t be until the Radiotherapy burning heals), but my back still feels like it is burning up. I can’t find an expected time scale for these Tamoxifen induced flushes to come to an end, it appears that everyone has a different experience, I think I will be on the hunt for one of those antique style fans to keep in my handbag for when I am ‘feeling the heat’.

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Radiotherapy Burns

After a few reasonably good days, Ray and I both had a real downer on Sunday. Megan needed to go to Hemel so Ray drove and I tagged along. Ray and I crept along like a couple of snails, we didn’t feel well enough to manage our normal walking pace and came home as soon as Megan had finished her shopping. When we got back Ray went off to bed and I followed soon after, we both felt better after a snooze. It has been a while since we both needed to rest in the afternoon, we slept well overnight too so we obviously needed it.

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I had my quarterly B12 injection in my bottom for the first time on Monday, it used to hurt when I had it in my arm but this time I didn’t feel it at all, that was a pleasant surprise! Tomorrow I have to go for the Pre-Op assessment for the operation to remove the Scleral Buckle in my left eye. That will be interesting, I expect to have to go through the whole explanation about why I can’t have blood or blood pressure taken from my arms. I wonder if I will need a cannula for the operation and if so will that have to go in my leg? The implications of having Sentinel Node Biopsies to both armpits begin to have more significance when needing medical treatment.

Ray saw his GP for a check-up, he will be off work until after seeing Dr Burn in early February, if Dr Burn is in agreement then he can go back part time to begin with. Ray and I went over to London Colney in the afternoon, I didn’t want him driving all that way on his own as he has only just started driving again. Ray dropped me off at TK Maxx and then went round to his head office. His colleagues were pleased to see him and he was able to have a chat with his Chief Exec about a return to work plan. Prior to his return, Ray will have a meeting with his Chief Exec, Heath & Safety Advisor and Occupational Health Advisor to agree the phased return plan, workload and any other issues relevant to his future working arrangements. It sounds like they have his best interests at heart which is very reassuring.

Another pleasant surprise on Monday was having my blog listed in the weekly round-up of ‘best blogs’ on the ‘Journeying Beyond Breast Cancer’ page: http://journeyingbeyondbreastcancer.com/2015/01/10/weekly-round-up-94/

I was honoured to have my blog featured, I have been following the page for a while and have read some brilliant articles there, and on the weekly round-up list, so to have mine included gave me a real boost.

I have been brought quite low by events last week and am still struggling with the implications to my future happiness. I am trying to forget about it but it is not easy to keep it out of my mind, it is night time when I should be sleeping that it really plays on my mind. I can only hope that this situation will improve with time.

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But I have had my mood lifted this week by kind friends sending supportive messages to me on Facebook, and for this I am grateful, you have kept me out of the pits dear ladies, thank you!

Today, Ray and I went for Tuesday Relaxation at the Lynda Jackson Macmillan Centre, after the session we went round to the Radiotherapy Department so that I could ask for some advice about my nipple blister. The Radiotherapy Nurse was very helpful, she gave me some lotion to use, and a medicated dressing to try as well. She also confirmed that I should not think about going back to work until the blistering and sore skin is healing well. The skin in the area which had the intensive booster treatment last week is getting more tender and red with each day, it could continue to do so up to four weeks after finishing my treatment. It isn’t quite like sunburn as the redness begins in the area in and around each skin pore and then gradually spreads out to the surrounding skin, it is beginning to itch sporadically but it is bearable.

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But I remain optimistic, the skin and physical scars will heal soon, the emotional scars will take longer, maybe even my lifetime, I’m not sure if having Cancer has changed me, maybe it is really too soon to tell. When I am back to my ‘pre-cancer treatment’ routine I may become more aware of changes in my outlook on life. Having the outlet of this blog is wonderful, I have always found it easier to express my feelings in writing, and in posting blogs I have been better able to understand and work through what has been happening to me since being called back after routine Mammogram screening for biopsies and then receiving the diagnosis.

Many years ago, when I was a babe in arms, my Nana Rose was looking after me with Great Aunt May, my Nan was one of fourteen children (twelve surviving past infancy). Great Aunt May had put me in my nightdress, one of those with a pull in tie at the neck that they no longer make because of babies being suffocated, and had laid me in my cot to sleep. Well you can probably guess what happened, my Nan came in to check on me and I was blue and not breathing, this was before mouth to mouth was common knowledge, my Nan says she undid the nightdress, took me outside, and prayed to God to save me. She used to tell us this story often, and she said that God had saved me for a reason and that I would have a special purpose in life.

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I don’t know what she was hoping for, but I’m not sure I have achieved anything special. But maybe writing this blog, sharing my experiences of Breast Cancer to help others is it? My son and daughter each have a friend with a mother recently diagnosed with Breast Cancer, they tell me that both women have been following my blog, if my words can help, then yes, I guess that I have achieved something.

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All Done – The End of Radiotherapy.

When I woke this morning, my first thought was that today was the final day of my Radiotherapy Treatment, and this made me very happy! I know that the effects will continue to build over the next two weeks, particularly skin damage, but this should be healing well by the end of four weeks so the countdown begins. My skin has started to suffer, I have a rash, the area under my breasts being particularly red and inflamed and my nipples are both very sore – rather like when I breastfed my children and they are beginning to peel. I accidentally scratched my left nipple with a finger nail this morning and nearly hit the roof, ouch! If you see me holding my boobs it will be because my nipples are stinging, which happens a few times each day, the warmth from my hands is soothing.

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Fatigue has hit with a vengeance, I am really pleased that Ray is now able to drive again, I felt so weary and bleary this afternoon I would have been a danger to myself and other road users.

When we got home I felt awful, so Ray sent me off to bed with a herbal tea and a bowl of grapes, I felt much better after a long nap.

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Ray and I went to the Lynda Jackson Macmillan Centre for our first Relaxation Session on Tuesday, it was well worth the effort of getting ourselves over to Mount Vernon for the 10 am start time, and we picked up lots of useful tips to help us sleep better. We will be going again tomorrow morning and staying for my Complementary Therapy Session in the afternoon.

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