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.
On his way home from work on Wednesday, Ray had a blow out on the front drivers side tyre on his car, fortunately, he kept control of the car and was able to get across to the slow lane and as far on to the grass verge as possible, however, he was still in a dangerous position on the A41, a fast dual carriageway. I was really worried about Ray after he called to tell me what had happened, Josh dashed out with a trolley jack hoping to be able to change the wheel for Ray, but we had both forgotten that not all modern cars have a spare wheel, as it happens, Ray’s car doesn’t, so Ray sent him home rather than have two cars at the side of the road. Ray had phoned the RAC and put out two warning triangles, but after a short time the Police arrived to safeguard Ray, and to make drivers aware by their presence that there was a hazard on the road. Because of the potential for accidents, the Police called their own breakdown service, the truck arrived within half an hour so Ray was soon home. Although unhurt, Ray was shaken up by the blow out, it took a few hours for his heart rate to slow down to resting rate. But he slept well and felt much better the next morning, I am so grateful, all we have to worry about is replacing a tyre, it could have been so much worse, I get butterflies in my tummy when I think about Ray having that happen to him.
Thursday was Endoscopy Day, Ray drove me to Wycombe Hospital (in my car as we didn’t have time to get the tyre replaced) and stayed until I was taken through to the waiting area. I was feeling a bit light headed and very hungry after numerous, and rather prolonged visits to the bathroom yesterday afternoon and evening, so it was just as well that I was going to be having a relaxing morning waiting for my turn in theatre. I read for a while before feeling a little sleepy, after the nurse put a cannula in my hand, I had a snooze.
Then it was time to go to have the endoscopy, I was given sedation but I didn’t feel at all sedated and was worried that the procedure was going to be painful and unpleasant. After a little initial discomfort, it really wasn’t too bad, there was a big screen where the doctor can see the images from the camera, I found it really fascinating getting the chance to see some of the inside of my own body. And to be able to see that it all looked health, no sign of anything to worry about, which was so reassuring, I was very happy!
The coffee and biscuits brought to me after leaving the Endoscopy theatre were really welcome, the nurse left the biscuit tin on the table next to the bed and I confess to having more than one serving. My normal blood pressure is low, and with sedation it was below my normal, the advantage was that I got to have an extra coffee to get my fluids up and help bring the pressure higher. When it had recovered enough, the nurse removed the cannula and I was able to get dressed and go to the lounge area to wait for Ray to pick me up. The nursing staff and doctor were all lovely, but it was great to go home at midday, it was the shortest visit to have a procedure that I have had since September last year. The procedure was a doddle when compared to having the wires pushed in to both breasts for the breast cancer operation last October, although not the most painful thing to ever happen to me, I think this was the most distressing.
I had only been home a short time when I had a call from the Breast Unit to offer me an appointment for my Ultrasound on Tuesday morning, so after a break for Easter, it is back to the hospital for me. The rest of the afternoon and evening were spent relaxing, drinking plenty to top up my fluid levels, and sleeping.
On Good Friday, Ray had a round of golf booked so after he had set off, I picked a project to work on, chose the decoupage images and paint colours and set to. I so enjoy letting out my creative side, starting with a plain, blank object, adding colour and images to bring it to life is very satisfying. Of all the hobbies I have tried, this is the one which has sparked my imagination and given me the motivation to stick with it, whereas with other things I have tried, I have soon lost interest. My project was an Ikea Malm mirror which I bought in a charity shop, it had already been painted green, so I coated it in PVA and then painted over this with pale blue, with the aid of a hair-dryer, I dried it to a crackle painted finish. I had chosen Victorian style decoupage images of children on the beach for two of the corners, and butterflies for the other two corners. The glue and paint needed time to dry completely before varnishing so I set the picture frame aside and picked out a wooden box to start on. I didn’t have much time left so chose a floral frame and added a watercolour of a young girl from the same book, the floral frame fits perfectly on the box, I couldn’t decide about the colour scheme so packed up for the day.
On Saturday, there was a one day ‘pop-up-shop’ for Artworks at the town hall. Artworks is a group of local artists and craftspeople who took a short term lease on an empty shop unit in town from which they sold their work, the lease ended, and they had to move out but decided to try holding a one day event in the town hall. I went along to see how they had set up their stalls, to try to get some idea of pricing and also to enquire about the possibility of joining the group and selling my products with them. I took along one of my trays, the one with a bird decoupage and stamped and hand painted flowers around the outside, he said it was unusual, and I hope that meant in a good way! I now have his contact details and will send him photos of my other work in the hope that they will accept me, fingers crossed!
Megan has been clearing out her wardrobe and has a lot of clothes to dispose of, we talked about doing a boot fare and decided to go for it on Easter Sunday. So Saturday afternoon I went through my wardrobe and drawers, there are quite a few things which no longer fit, I have gained quite a few pounds since being diagnosed with breast cancer, now far too many of my clothes are too tight. I have been eBay shopping for things which fit and needed to make some space. I filled two large laundry bags, plus a few carrier bags, I also found a few bits of brick-a-brack to take along. Liza had some clothes she wanted to sell too, so with Ray’s help, we loaded up his car, Megan drove her and Liza and also Shadow so he could have a day out with us rather than leaving him home on his own.
We set off very early, I had done some research to find a boot fare locally, but it turned out that the information was out of date, we had a magical mystery tour around Bucks, and many I had found on the internet were no longer running. We found two which began at mid-day, as we had some time on our hands, we went in to a Harvester and had a cooked breakfast.
Suitably refuelled and refreshed we headed off to set up our stall at the boot fair. It took a while getting everything laid out on bits of carpet, or hung up, and after a chance to have a quick scoot round to look at the other stalls, the customers began to arrive. Business varied from no one at our stall to several people at once. We sold lots of our things, the day was dry, warm and occasionally sunny and we made back our table money and more, so all in all a successful expedition. I was selling my clothes at £1.50 each and one lady bought over £20.00 worth! She had two lovely twin daughters, I guess they were around 6 – 7 years old, one of them told me that her mum already has lots of clothes at home, I told her that I do too, and that ladies like to have lots of clothes to choose from 🙂
We had packed up quickly at the end of the boot fair, so when we got home I counted the takings and distributed the money between us, as we had been more successful than we had expected, we decided we would do another in a few weeks. We didn’t take anything from the loft or from the stash of children’s toys that we have stored behind the shed, so would have no trouble stocking another stall.
Megan cooked roast lamb dinner whilst I sorted, folded, re-packed and stowed away the clothes ready for next time. We ate our dinner off our laps in the front room as I now have so much craft stuff in the dining room that we can only just get in there, there is no chance of finding room to sit five of us around the table. I’m getting fed up with this now, it has been like this for weeks, we are getting closer to organising a craft shed for me but it seems to be taking a long time.
Today we woke to blue skies and sunshine, Josh was at work, Ray went for a round of golf, Megan, Liza and I went for a short shopping trip. I took back some clothes I had bought without trying them on – a mistake, they didn’t look good. I found a skirt, vest top and nightie to replace them, these are much better. It was a good trip, and we were home in time for lunch.
This afternoon I took a trip out to collect some chairs I had bought through eBay, I will be refinishing them to sell on my stall. When I got home, there was time to varnish the picture frame I painted and découpaged on Friday, and to choose a colour and paint the trinket box which is my next project.
So tomorrow I go for my Ultrasound scan, I am a little concerned about the possibility of there being a seroma, and that if so, then this will be aspirated, the thought of more needles in my boob is not at all welcome.
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. 🙂
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!
It is now just over a week since Ray’s last visit to the hospital so I thought it was time I updated on his progress. There is no change in his speech, he still has the lisp which sounds quite cute, there is something very endearing about it. There is also no change with the difficulty chewing and swallowing. Ray wakes up in the morning with pain, but once he has taken the first dose of Tramadol and then continues to take it regularly, it is bearable and under control for the remainder of the day.
Ray had an appointment with his GP on Monday as his sickness certificate had expired, Dr Hussain has now signed Ray off work until the 9th of February 2015. Since having the continual pain, and with not being able to do much, Ray has been feeling low, so they discussed him having anti-depressants, Ray felt it was best for him to start taking them before giving it a chance to take hold so now has these to take too. It is fortunate we decided to buy a Prescription Pre-Payment Card, as Ray now has four different types of tablets to take each day.
Ray taken on our holiday to Cumbria in June
This morning two letters from hospitals arrived, one was a copy of the report sent from Wycombe Hospital to Ray’s GP, it has details of his diagnosis in proper medical terms, so here it is:
Left hypoglossal nervy palsy – due to left internal carotid aneurysm dissection at skull base.
Ray has felt well enough to come with me for my Radiotherapy since Wednesday, it is so good to have his company, in this and at home. I think I would be feeling very lonely without him, although I would like the circumstances to be different, I am grateful he is home with me.
The other letter was for me, from King Edward VII Hospital, with an appointment for the Pre-Op Assessment Clinic on 14th January at the Prince Charles Eye Unit. This is in preparation for the removal of the Scleral Buckle in my left eye. All being well, the operation will be done around two weeks later, ah, just in time for my birthday then. I hope that the removal will not cause so much disturbance as occurred when it was fitted. I had a general anaesthetic for the fitting, for the removal I will be having local anaesthetic only, I am very nervous about this, but I have resolved that if Ray can get himself in the MRI Scanner, then I can cope with being conscious for my eye operation. Fingers crossed!
This photo was taken a few days after the operation.
And now, back to breasts! You may recall that I had asked one of the Radiotherapists about the discomfort in my right breast, the staff had reviewed my scans and apparently it is being caused by two Seroma in the breast putting pressure on the remaining breast tissue. If the seroma get any larger and begin to distort the measurements then they will need to do something about them, but for now it’s a case of grin and bear it.
Yesterday evening I began to feel some itchiness in the skin between my breasts, it has persisted today. Putting my bra on this morning, I noticed that the skin was tender where it touches my skin particularly around the bottom band, so begin the side effects of the Radiotherapy.
I mentioned it today at my treatment session, the advice was to switch to E45 cream and to make up Camomile Tea, wait for it to cool and bathe my skin with it. I will try these suggestions out, sitting here this evening, even my ‘crop top’ bra is making me feel sore, trouble is that going unsupported is uncomfortable, swinging about on the loose is not pleasant for tender boobies.
Yes, having my boobs on display on an almost daily basis is making me feel a little like a ‘Fallen Madonna’, my boobies may not be big, but I can claim to have one sore right side boobie, do you think that will count?
I can understand how each woman’s and indeed man’s experience of breast cancer is different, I am one woman having treatment for two breasts, and they are each very different in their reaction to surgery and radiotherapy.
My left breast/underarm area is taking on the role of ‘perfect patient’, healing nicely, hardly noticeable scars, no seroma and, (so far) no issues from Radiotherapy. In fact you would probably not notice that there has been anything amiss to look at it, the only complaint is discomfort in my shoulder when my arm is raised above my head during radiotherapy treatment.
My right breast however, is being ‘difficult patient’ healing nicely but not tidily – strange shaped slightly sunken areola, nipple now lying flat in an upwards direction, oedema, pulling and lumpy bumpiness, underarm three times aspirated, and hard lumpy scar tissue. Even though I have only had four treatments, the radiotherapy seems to be making the fluid filled area from which the lesion was removed on my right side quite hard already, I’m not sure if this is coincidental or a side effect, I will have to ask. And both the breast and the underarm scar are tender, I have to treat the area very gently when applying twice-daily moisturiser (this is to help keep the skin in the best possible condition to cope with the radiotherapy).
Both breasts have sharp stabbing pains periodically, they mostly only last for a short time but if you see me clutching one or both of my breasts, this is the reason. I have stopped taking the Co-Codamol as I found that they were the cause of my disturbed sleep, I am now sleeping much better, and now taking just Ibuprofen as necessary.
Christmas is nearly upon us, Ray and I have written and posted our cards to distant relatives and friends, but we still have the local ones to get done. Yesterday we went and bought a ‘Value’ Christmas Tree from ‘Chesham Christmas Tree Farm’, if you are local and haven’t already got a real tree, pay it a visit, highly recommended! Josh ventured up in to the loft this morning and brought down the decorations. I had a snooze after lunch, and then went off for my radiotherapy session. I asked about the hard lumps in my right breast, Callum, one of today’s radiotherapy team said it was too soon for it to be caused by the treatment. They would not normally expect any reaction to occur before about ten days of treatment, so he would email Dr Makepeace to let him know about it.
I decorated our tree when I got home,
Ray helped by sitting across the room so he could see all of the tree and directing me to which bits needed more baubles, and it looks lovely and festive. I also set up the Nativity in the fireplace, this probably isn’t a very good picture but you get the idea 🙂
I found this meme today, it eloquently expresses my feelings on positivity, and not being able to always maintain it through all of life’s challenges