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.
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.
Earlier this week, I read Sharon Green’s latest blog in which she discusses ‘Collateral Damage’, the untreatable side effects of Breast Cancer Treatment.
“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.
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.
Now it is time to get organised for bed, tomorrow is a working day and I need to get up at 6 am.
Well, it was okay, the worst thing was the long wait, I had to be on the ward for 7:30 am, Ray was able to stay with me until he had to leave for his appointment in High Wycombe with Dr Jackson. Ray visited a friend after seeing Dr Jackson and still arrived back at the hospital before I had been for surgery. Ray had a good discussion with Dr Jackson, it appears that the MRI was so important as they needed to be sure that Ray’s symptoms were not being caused by a brain tumour. I’ll admit that this never occurred to me, and I’m glad about that as things were bad enough at the time without that to worry about as well.
For some of the time, I chatted with a lady whose husband had gone for surgery, she was jolly and cheerful, her sense of humour was great, and she did a good job of keeping my mind off the operation. We had quite a laugh together, talking about failing memories and the joys of getting older, Glennis is over twenty years older than me and had been single until marrying her husband Mike 17 years ago. They were able to leave soon after Mike had returned from his operation so I spent the remaining time reading.
When my turn for surgery came, Ray had just arrived, so he went off in search of some lunch. The surgeon was great, he covered my right eye for me as I didn’t want to see what was going on and answered my questions before and during the surgery. With all the various drops I had put in my left eye, I wasn’t able to make out much of what was happening, all I could feel was pressure as the surgeon worked to remove the Scleral Buckle. When it was all done, the eye was covered with a dressing, the cover was removed from my right eye and I was walked back to the ward. After coffee and toast I was allowed to go home. When we got home, I went straight to bed and slept off the stress.
The next morning my eye was uncomfortable but bearable, I had to take the dressing off so that I could start with the antibiotic/anti-inflammatory eye drops the hospital had given me. It was much better than when the Scleral Buckle had been inserted 18 months ago, although it was puffy, my eyelid opened and the eye was only red to the bottom left and underneath the iris where the buckle had been.
This is how it looked 18 months ago, day one and three days post-op
And this is Wednesday before and after taking off the patch
Fortunately, I was recovered enough to go to the HOPE Course on Wednesday, Josh drove me as my eyesight wasn’t legal, after all the years of ferrying your children about, it’s fabulous when they reach the stage of passing their driving test and being available for chauffeuring duties!
This week at HOPE, we talked about body image, and sexuality and intimacy. Other than the hot flushes, one other distressing side effect of the Tamoxifen is vaginal dryness. The lady I sit with told me she had the same problem and was prescribed hormonal pessaries which she finds do the trick, so it’s now on my list to ask about next time I see my GP. Being able to talk so openly with other women about the impact of cancer on relationships, emotions and life in general is so therapeutic, we have so much to offer each other in sharing our feelings and experiences. I recommend it to any of you reading this who are having or have had treatment for cancer.
This week we were asked to set a goal related to the topic, so I have decided to get a proper bra fitting, all the bras I have are now uncomfortable or the wrong size in various directions. So on Monday I am off to M&S for a measuring and fitting appointment. I am not looking forward to the trying on part, I always seem to get sweaty in fitting rooms and with the hot flushes making a re-appearance, it could be an embarrassing event!
The last few days have been a nightmare of overheated dampness, if I make any move to do anything other than sit still I end up bathed in sweat, when this happens I get short tempered, best described as hot and bothered. I thought I had got over this but it appears not, I’m tired of it now, I hope this phase wears off again soon, I seem to spend more and more time at home with just a vest on top, it’s really not cool!
Ray ordered a small desk fan for me to have on my desk when I go back to work, I have been making use of it today, I told him I need another one to keep at home, as I type this, I can feel the heat building again.
My eye is getting better, I could see well enough to drive on Friday, and the redness is dispersing so that the white is now varying shades of red through to yellow and I am managing without pain relief during the day. By the evening, it is tired and sore so I take painkillers to help me sleep. I have a lovely plastic eye shield to put on at night so that I don’t accidentally rub or knock it in my sleep. It occurred to me yesterday that it looks a little like I am beginning to be assimilated by The Borg!
I’d like to claim to look like Jeri Ryan as ‘Seven of Nine’ after she has recovered from being severed from the Borg Collective, but it would be more honest to say I more closely resemble her when she has just been rescued, only I still can’t claim to have such an impressive physique!
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.
This morning I had a regular appointment with my GP as my sickness certificate expired today. I felt really sore yesterday, then this morning I noticed that the skin around my nipples was blistering and also that the left side was weeping. After having a look the verdict was that the blistering is infected so my doctor prescribed antibiotic cream, an oil based cream to use instead of the E45, and antihistamine tablets to help ease the itchiness which usually starts up in the late afternoon. I also came away with another sickness certificate for the next four weeks to give the infection chance to clear up, and for my skin to recover before I return to work. I am very sore this evening, as I sit writing this my nipples feel like they are burning, it is very uncomfortable.
I am feeling sad this evening, partly because of having an infection, I have taken so much care of my skin since my operations that I am disappointed about getting it. But also because of a conversation earlier today in which my commitment to work was questioned. I have been thinking about it this afternoon and feel hurt that this person said what they did, yes, I was off work last year for several weeks with severe depression, I did not choose to be off work, I was not fit for work. As soon as the medication started to work properly and I began to be able to function, I went back to work. It took a lot of effort to get myself back in to my job, I had made so much progress over the few months, and I felt I was ‘back to normal’.
I also did not choose to then have Bi-lateral Breast Cancer, it is not something anyone would choose is it? I would understand if I had been off with flu or toothache or something equally minor. But I have had Bi-lateral surgery, yes the Cancers have been removed, yes I have had Radiotherapy and have been prescribed Tamoxifen for the next five years to help reduce the chances of the Cancer recurring, but in medical terms I am not cured yet, I am in remission.
Cancer is not something you can just ‘bounce back’ from, it is now a part of who I am, and will continue to be part of my life for some time, in a few weeks’ I will be back to hospital for my check-up appointment with the Oncologist. Then in November I will be back to have the first of five annual Mammograms.
I hope that after five years I will be able to say that I am cured, however, I am well aware from the experience of other women that the Cancer may return, I’m not being pessimistic, I am facing a reality. My Cancer being Bi-lateral increases the chance of a recurrence, that’s just the way it is, I hope to be one of the lucky ones, but only time will tell.
But life goes on, and tomorrow is a new day, I intend to make it a good one!
We are a few days in to a brand new year, one in which Ray and I are hoping to regain our health, or at least have improvements, what level this will be at, we do not yet know.
Last Monday I had a break from driving as my sister Sharon took me to hospital. As I wasn’t driving I was able to watch the world go by, it was a day for birds, I saw two Swans on the lakes by Latimer Road, a Heron in the river Chess, and when we were walking back to the car park, there were three feral Monks Parakeets eating berries in a tree (I think it might be a Flowering Dogwood).
The last few nights have been an experience, on Thursday Ray missed taking his Tramadol at midday, and late afternoon, as his pain levels were manageable, he decided that he would try going without his night time dose too, he didn’t tell me his plan or I might have been better prepared.
I now think that if you can manage without Tramadol then do so, as the coming off it is horrible. Thursday night neither of us got much sleep, Ray felt fidgety, anxious, had trembling, nausea, headache, and felt generally unwell. Whenever he had dozed off to sleep, he began to twitch, I think he went through almost every muscle in his body. I was getting very fed up, just as I was about to doze off, one part or other would begin twitching, at one point I thought Ray must have been dreaming about playing a piano, but on me, right on one of my tickly spots, I was not amused!
The next morning we both felt rough, Ray looked up the withdrawal effects from Tramadol and he was going through all of them, so he told me that he was going to stop taking them. The withdrawal effects last around 48 hours, so we had another disturbed night to get through, but at least we were both aware of what to expect.
Thankfully by last night, enough time had passed since Ray’s last dose that we both got a good sleep, I don’t remember waking at all, which is excellent! This afternoon Ray and I took the Christmas decorations down and packed them away for another year. I was having a horrible hot flush, felt overheated and was sweating badly when Ray’s friend Kevin called round, I felt embarrassed but told myself that Kevin wouldn’t make anything of it, he is a good bloke. The Tamoxifen induced hot flushes and sweating are distressing, I will be grateful when they reduce in ferocity, hopefully it will be soon. The fan in our bedroom is usually packed away in the loft for the winter, but it is still in our room as I need to use it every day.
Tomorrow, I will have the first of three ‘Booster’ Radiotherapy treatments, once these are done, I will have finished, and I will be so pleased to be through it. So my next challenge will be preparing to return to work, this is going to need a lot of consideration. On Thursday I saw the Consultant Radiotherapist for a mid-treatment check-up, she told me it will be two weeks from finishing Radiotherapy before the full side effects will become apparent, and then another two weeks for them to wane. So I am unsure when I will feel well enough to work part time, hopefully my GP will be able to give me some advice when I see her on Friday. I do not want to go back too soon and have to then go back off sick again, it is a dilemma.
I have been working on this little piece today, it is just for fun and my own amusement, today just felt like a day to break free from the mundane and venture in to an attempt at escapism, I hope you like it 🙂
An Insomniacs Poem for Christmas.
‘Twas the night before Christmas, when all through the house,
Dee alone was stirring, and maybe, the shed’s resident mouse,
The presents had been wrapped in a last minute rush,
And now in the house, was the stillness of hush,
Shadow lay snoring in his cosy bed,
While visions of chasing cats played through his head,
His dreamtime woofs gently sounding about,
Those cats do need chasing, of that there’s no doubt,
When out in the garden there began a fierce yowling,
Which set Shadow off with some wide awake growling,
Two cats had appeared and were deep in combat,
That Shadow wanted to chase them, well that was a fact,
The New Moon barely shed light on the whiteness of frost,
If I let Shadow out it will be at a cost,
His barking may wake children, snug in their beds,
They might just spy Santa as he zooms overhead,
His Reindeer in front, pull the loaded up sleigh,
Delivering presents before break of day,
Their hooves they do fly in the twinkling night sky,
So swift, if you blink, you might miss them pass by,
“Now, Dasher! now, Dancer! now Prancer and Vixen!
On, Comet! on, Cupid! on, Donner and Blitzen!
And Rudolf he leads, with his nose all aglow,
Lights up their way, wherever they go,
Away to the rooftops, where owls mournfully call,
Now fast away, no, not that way, down this way all!”
Stockings, like magic, have been filled to the brim,
But did children spy Santa? No sight of him,
As Dee returned, bleary eyed to her bed,
Visions of wonder flowed through her head,
She heard someone calling, though the sound was but slight.
“Happy Christmas to all, and to all a good night!”
Dee Rutty 23 December 2014