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.
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.
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.
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!!
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.
Thursday was my first day back in the office since 14th October 2014, I’m doing a phased return, my hours for this week and next are 10 am to 2 pm. I have been looking forward to getting back to work, and getting back to a near normal routine.
I have been surprised by how happy I am at being back at work, like everything in life, some of it I could do without, but I mostly enjoy my job, and I work with some great people. I have been really happy to be there these two half days.
Tiredness has got the better of me though, on both days I have felt tired towards the end of the four hours and have had a sleep when I got home. My colleagues have been welcoming, much as I love my family, it is good to see some different faces during the day. Getting up the stairs has been a struggle, there are more steps than at home and I am out of breath by the time I’ve walked from the car park and up to the office, makes me feel old! I will have to find excuses to go up and down the stairs so I get used to them again.
We are a small team and my absence has impacted the workload for everyone, some of my tasks have not been looked at whilst I have been away but I will get through it bit by bit.
My eye has coped reasonably well with looking at a PC monitor for up to four hours, it has got uncomfortable towards the end of my time at work but not unbearably so. I think the biggest impact has been on my arms and shoulders, they are stiff and sore this evening and have been objecting to being laid on in the night.
The HOPE Course this week was about physical activity and I resolved to go for a walk with Shadow over the weekend, judging by my lack of stamina it will have to be a short walk. But then I have an excuse, poor Shadow has a limp on his front left leg this evening, he must have strained it on his walk with Ray this morning, so it will be restricted walks with no games of ‘fetch’ for a few days.
I have been getting used to wearing a bra again, some days it is not too bad and other days it just has to come off. We were all watching TV one evening this week and that point had come, I did the undo hooks, straps down inside my sleeves, and pull off through the neckline trick. My daughter noticed and said in a shocked tone ‘Mum, did you just take your bra off?’ I had to giggle to myself, she is 24 but is easily offended bless her.
I have had a few sharp pains in my left breast today, the healing process is ongoing, I still have obvious seroma in my right breast, the left is more deep seated so is less noticeable. Apparently the seroma can take many months to be re-absorbed so I have to wait until it is all cleared to find out what my shape will settle to.
I’m feeling tired again now so it is time for bed, tomorrow is Art Journalling for Megan and I, looking forward to that, we will be making collages, such fun!
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.