So, life is very different to how it was when I last posted a Blog. I think it might be time to pick this up again. But not tonight, I have had a busy day and it’s time to sleep.
It has been months since I wrote and the reason I have been prompted to write today is that both my nieces have started their own blogs this month and reading what they have written has motivated me to write.
So, an update – I had the first of my five annual Mammogram screenings and check-up appointment in November. I am delighted to announce that the result of my mammogram shows NED – No Evidence of Disease. So I am now officially in remission, fabulous news!
However, despite being pleased, I admit that I wasn’t as excited about the news as you might expect, not because I am not grateful, for I certainly am. It is more that it felt more like the next step along the way to healing both physically and emotionally.
Looking back, my last proper blog was written on 2nd May 2015, it had just been agreed that I could reduce my working hours and I have been working three days a week since then, this has been significant in me feeling well enough to keep working, both at my paid employment and craft work.
There have been days recently where I have felt very low, the feelings were very familiar, anxiety and low mood hit me unexpectedly in early January, there were days I so wanted to stay home with a soft, fleecy blanket to snuggle under and my kindle. But I managed to grit my teeth and get myself to work, it took a lot of effort and at times I sat at my desk, anxiety twisting in my stomach and tears threatening when I would have picked up my things and walked out of the office. January has been a difficult month for me for many years, I probably have Seasonal Affective Disorder (SAD), but having not been formally diagnosed, I can only suppose this to be the case. I have a Light box on my desk at work and have started using it again, I think it is helping, I am beginning to feel more ‘me’.
On the 12th January, I posted on Facebook: ‘Two years ago today I was at the beginnings of another occurrence of depression. Today I am fearful because despite still being on maximum dose anti-depressants, I am heading downwards again. Those familiar feelings of despair and panic are re-surfacing. The wish to hide away somewhere warm and dark with a blanket and my kindle is just about all I feel I want to do. A re-assessment of life might be worth considering, perhaps it is time to make changes?’ I understand that some may not approve of putting such personal and negative sentiments on to social media, but I am blessed with some wise and caring friends who have supported me through this medium for many years and their comments and good wishes pick me up.
A dear friend commented:-
“”The wish to hide away somewhere warm and dark with a blanket and my kindle is just about all I feel I want to do.”
I understand those sentiments Dee, I’ve been somewhere similar myself. I am not sure what to say to you, as everyone’s situation is very different. If I could find a positive uplifting message that would make a difference, I’d write it, but the part of your post that did give me a lift was “A re-assessment of life might be worth considering, perhaps it is time to make changes?”
Quite possibly yes. I would caution you not to make them all at once, as that too can be overwhelming. One step at a time Dee. You and your family have had a lot going on in the last couple of years.
I know you’ll also have heard this, a lot, but please make sure you speak to someone in person about this – whether it’s Ray, a counsellor, your GP, someone.
I won’t say “it’ll be alright”, I don’t know that, and can’t say, but what I can say is that I hope and pray that you can follow through on the final words in your post, and take first steps in clearing your way through the miasma of depression ❤
For her words I am thankful, this lady can be relied upon to give advice is relevant and thoughtful and for that I am grateful. Yes, the last few years have had many challenges, I wonder whether staying strong through it all has left me emotionally exhausted with depression as the resultant fall-out.
So, one year on from the traumas Ray and I experienced at the hands of Bi-lateral Breast Cancer and Transient Ischaemic Attack (TIA) do still affect our day to day lives. Ray has days where he struggles to make it through work and will go to lay down when he gets home, just last week he went to do the grocery shopping and had to call me to go and pick him up as he felt too ill to drive home safely.
I have radiation damage to my left shoulder and upper arm, I am learning to live with nagging aches and on bad days, noticeable pain. It is better to keep the area warm but the hot flushes get so bad some days I need to put a fan on, which makes it cold and painful.
But I am grateful to be alive and well, to have my family around me, and for all the good things I am blessed with. Life has sent challenges, but I’m still standing!
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:
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.
I’ve been very busy at work over the last two weeks as our financial year ends on 31st March and there is a lot to be done. Working 22 1/2 hours over four days is working out well for me, I would really like to continue with these hours and move to working a three day week as soon as possible. I have suggested job-share but my employers are unwilling to consider this whilst we have so much work to get through.
I have been concerned about lumpiness in my right breast where the tumour was taken, and also some pain and lumpiness in a different area of the breast. I spoke to the Breast Care Nurses about it last week and was booked in for a check-up at the breast unit on Monday. I was seen by the Nurse Practitioner, we discussed having genetic testing, and went through a computerised risk assessment which came out below the level at which I could be referred for this. I am happy with the outcome, I didn’t feel there was a genetic risk behind my Bi-lateral Breast Cancer as there is no history of it in my family, I am one of the ‘bad luck’ cases. The Nurse examined me and decided to refer me for an ultrasound scan to check my right breast. Where the tumour was taken, the lumps are probably a Seroma, if this is the case, they will drain the fluid off for me. But it might be that this is scar tissue, in which case nothing can be done, and the thickening and discomfort beyond the tumour site may be hardening of breast tissue caused by the radiotherapy. I’m just waiting for the appointment now, it should be in around three weeks.
Last week I had a General Surgery consultation appointment as I have had problems with my digestive tract which pre-dates my breast cancer diagnosis. The doctor referred me for a endoscopy for suspected irritable bowel syndrome, I was fortunate to get a quick appointment for this as another patient had cancelled, at least it will get it over with! So I am off work today to drink the horrible concoction that will clear out my digestive tract, it tastes just like diorite, not pleasant, and of course having the opposite effect! I started taking it at 11 am and I can feel things starting to rumble, but it’s now mid-afternoon and there is no action, yet!
At Mindfulness Meditation this week we discussed compassion for self and others. Ray and I now realise that we have been treating life’s setbacks and problems in a mindful way for all of our life together. We will make a decision and stick to it, if it doesn’t work out how we had hoped, then we accept it and move on, we have never been resentful or regretful when things go badly. We just get ourselves up and get on with life, never indulging in ‘what ifs’ or ‘maybe’s’. If we make mistakes, we accept them, there is nothing to be gained in denying matters of fact, the harder part is not continuing to recall errors, and still feel bad about them months or years after the event.
I have been neglecting meditation, it somehow gets forgotten about until Tuesday evening when we are asked how we are getting on with it. I think I need to try a different approach, I will meditate on it!
Last weekend being the one where we move in to British summer time, and with a desire to go swimming, was motivation enough to tackle the lawns on my legs, under arms, and lady garden. I have neglected them for months, actually, since my breast cancer op back in October. It was a mammoth operation, I started with a new blade but it was quite blunt by the time I had finished. It took so long to do, I began to smell burning as I switched off the shower, I was really worried I had blown the heating elements, luckily it wasn’t the shower at all, it was Megan burning her breakfast downstairs! It’s not a perfect job, the problem with being short sighted is that showers and glasses don’t work well together, when I put on my glasses it was apparent that more work is required, oh dear!
Last Saturday was to be the last Session of the Art Journalling course, but so many of us were keen to continue that there will be another four classes starting the weekend after Easter. I am really pleased about this as it is so enjoyable, both in being creative and having good company in class.
I have been thinking about getting organised for the craft stall I will be doing in May, I think I have almost definitely decided on calling my craft business ‘Elsie Rose’s Attic’, my style is mostly retro and by choosing this name it leaves options open to change and diversify what I make and sell.
Elsie was my paternal Grandmother’s name and Rose my maternal Grandmothers name, of whom I have been thinking of a lot just lately. Both had skill in making things, be it baking, crochet or sewing, both were two of the most gentle souls I have ever met. I still have a ‘Granny Squares’ blanket which Nana Rose made for me, it is too old and fragile to use now so it is safely stored away.
I’m looking forward to Easter, having four days off will be great, and give me time to recover from tomorrow. We are planning to do a boot fair on Sunday to get rid of things which are cluttering up the place, but if it is raining we won’t bother, I don’t fancy standing out in a cold field in the rain, that just doesn’t sound at all appealing.
Have a lovely Easter!!
Friday 30th January was my Birthday, I am happy to now be 52 years old, I am grateful to be reasonably healthy, have a wonderful Husband, Daughter, Son and Sisters, have a choice few lovely friends, an adorable Dog and all of life’s essentials. Ray and I took Shadow for a slow walk round the flat pathways at Wendover Woods, followed by a coffee each from the café in the woods, and lunch in Chesham. I opened my gifts in the evening after dinner, Ray gave me a craft light with magnifying lens, my eyesight is not what it was, so this is very welcome! and a Loreena McKennitt CD. Megan gave me a ‘Mother and Child’ and purple glass charms for my bracelet, an angel’s wing to go on my angel necklace and some Lindor chocolates. Josh and Liza gave me a Kirtsy Allsop Pyrography Kit, a different Loreena McKennitt CD and some Lindor chocolates, as you have probably guessed, these are a favourite of mine. My sister Sharon sent me a ‘Terrific Year Project’ Calendar, my friend Jenny gave me a stained glass heart hanging, and our neighbour Jacqui gave me two fresh cream choux buns which I shared with Ray. Liza made a tasty fruit salad, with lots of different fruits, really good! We delayed the birthday meal until Saturday and had a takeaway from Chesham Cottage, it was excellent, really tasty and plenty of food, I saved half of mine and had it for dinner on Sunday. It was a lovely calm, chilled out Birthday, one I will remember for a long time as it was just so enjoyable and fantastic not to have to rush about anywhere.
On Monday, I was reminded that 2nd February was the 25th Anniversary of the day F. W. de Klerk released Nelson Mandela unconditionally and legalised all formerly banned political parties. De Klerk, the then new president of South Africa, believed that apartheid was unsustainable and unconditionally released all ANC (African National Congress) prisoners. I have always admired Nelson Mandela, he endured so much, but because of his principals was a wise and compassionate man. He made so many excellent, inspirational speeches, these are excerpts are two of my favourites:
Our HOPE Course ‘homework’ this week was to do something mindfully, I chose to work on a craft project mindfully. So I have been taking notice of the smells of the paint and glue, which sounds slightly dodgy! To set your minds at rest it is emulsion paint and PVA glue so no noxious vapours! I have also taken notice of the textures of the painted surfaces, the sandpaper I have used to distress the edges of the small unit I am working on, the decoupage paper I will be decorating it with, and the fibres of the brushes as I clean them. I have been using my magnifying craft light to cut out some butterflies for the unit, it is perfect, so much better for my eyes and I can cut around small shapes easily. This is a much bigger project than the birdhouse, it’s not finished yet, but all that is left to do now is to varnish it. I’m going to be keeping my fingers crossed that none of the stamping and ageing mediums don’t run, here’s hoping!
We woke up to snow yesterday, Ray took Shadow out for his walk but didn’t take a ball as it usually gets lost when there is snow, Shadow is not good at finding his ball unless he sees exactly where it lands. Shadow lasted until they were on the way home and then decided he really couldn’t come home without a game of fetch, so he brought Ray a stick to throw instead. Shadow just loves to play fetch, he has a basket of toys at home to play with and will often tip everything out to find a favourite toy for one of us to throw for him.
I have been getting myself psyched up to return to work part-time next Monday, but yesterday morning the postman delivered a letter from the eye hospital telling me I am booked in to have the Scleral Buckle removed from my left eye ….. on Tuesday!
So, my return to work will be delayed by around two weeks, and I have more pain to come, but as I have been through it all before when the buckle was fitted, I know what to expect. And the discomfort will not last as long as it did following last October’s Bi-lateral Wide Local Excision Breast Surgery and Sentinel Node Biopsies.
My breasts are getting on much better now, I keep forgetting to mention that I still have a slight blue tinge lingering in my left breast from the radioactive dye, and its over three months since I had the surgery. The worst of the peeling is now finished, where it was at its worst there is some secondary peeling but nothing major. The Seroma in my right armpit has now almost completely cleared up, but there is still quite a lot of fluid in the right breast, a slight dent is slowly developing as the fluid begins to drain away. Yesterday I decide it was time to try wearing a soft bra, I managed for most of the day, but by the early evening enough was enough, so bra off, vest on, and breathe! It is great that I am now able to have pain free showers, dodging about to avoid the spray falling on sore nipples can be awkward in a confined space. And, I have managed to wear a post-surgery bra all day today, yippee!
In an earlier blog, I said that I was thinking about having a tattoo to disguise the Radiotherapy dot between my breasts. I have decided not to go ahead because if the breast cancer comes back, it could cause problems with radiotherapy measurement marks. I might just get some temporary tattoos or cover the dot with a stick-on bindi if I ever wear a low cut top, do you think I could get away with that?
And in other news, on Saturday, Ray realised that he is now able to move his tongue to the left side of his mouth, he hadn’t been able to do this since his second TIA (Transient Ischemic Attack) in November. He has muscle wastage in the left side of his tongue but will probably regain this now that he can move it about. It has made eating much easier for him, he can now chew on the left without biting his tongue and getting food stuck which is brilliant!
Ray had his check-up appointment today with Dr Burn at the Stroke Unit. Dr Burn is happy with Ray’s progress, says that he can return to work part time to start with and see how he gets on before increasing his hours. Ray will have another check-up in four months, if all is still progressing well, and he has had no more TIA’s then Dr Burn will discharge him. However, Dr Burns says Ray should not play golf for at least another month, Ray was very disappointed to hear that, he has been itching to get on the golf course.
As I wanted to be with Ray for his check-up I didn’t make the HOPE Course today, tomorrow I will be at The Lynda Jackson Centre for Relaxation class and an Aromatherapy massage. If Sue (one of the HOPE facilitators) is there, I will be able to find out what our homework is for the coming week.
Today is World Cancer Day, the news this morning said that the percentage of people having a cancer diagnosis has risen from one in three to one in two, that is not good news, but I suppose the balance for that is that more people are now surviving cancer, so lets hold on to that thought.
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:
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:
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.
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.
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.
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:
- 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.
- 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.
- 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!
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’.
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.
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.
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.
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.
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!
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:
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. 🙂
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.
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!
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.
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.
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.
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!
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 🙂
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’.
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.
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.
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.
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.
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.