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.
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. 🙂
Today was Pre-Op Assessment day for the removal of the Scleral Buckle in my left eye. I had my blood pressure taken from my leg for the first time, the cuff went round my calf muscle, it was a little uncomfortable, I felt like I was about to get cramp, but it was all done quickly and as I will be having local anaesthetic there was no need for blood tests. The operation will probably be in February but I have been put on the ‘Short Notice List’ so may get to have it sooner if someone else cancels. So after a remarkably short visit Ray and I set off home.
It was a beautiful sunny morning, we were very surprised to see Daffodils blooming on one of the grass verges! It seems very early to see Daffodils in bloom, I just checked on the RHS Website and they say that the flowering season is February to early May. So they are early, it is lovely to see the first signs that Spring is on the way. I am looking forward to seeing the lambs, they are simply lovely!
I have been thinking that I have been rather unfair to my right boobie, in a previous post, I said that my left breast was being the ‘perfect patient’, however, its halo has slipped somewhat over the last few days. It is on this side that the blistering has been causing a problem. When I changed the dressing this morning, the skin over the first blister came away with it (sorry if this is too much information), I also noticed that there is a new blister on the Areola, ah well, only a few more weeks and it should all be healing up. Even with the twice daily moisturising regime, my right breast has started to peel, I certainly wouldn’t make it through an audition as a glamour model! Just as well I have never aspired to bearing my body for profit 🙂
After lunch Ray and I did some tidying in our sitting room, it wasn’t that much and didn’t take long but it exhausted me. I went for a lay down and slept for three hours, when Ray brought me a coffee at 6:30 I was completely disoriented. I woke thinking it was Saturday morning and noticing Ray was dressed said to him that he was having his hair cut today! Ray looked confused, I then realised that it wasn’t morning or Saturday either! Oh dear, Ray does have a haircut booked on Saturday, so at least I got one thing right! This Radiotherapy fatigue is messing with my head, well that is my excuse, and I’m sticking to it 🙂
Today seems to be a ‘hot flush’ day, I have days like this, there doesn’t seem to be any regularity to them, it is very unpredictable. I have stripped down to my vest top (not back to wearing a bra yet, and won’t be until the Radiotherapy burning heals), but my back still feels like it is burning up. I can’t find an expected time scale for these Tamoxifen induced flushes to come to an end, it appears that everyone has a different experience, I think I will be on the hunt for one of those antique style fans to keep in my handbag for when I am ‘feeling the heat’.
After a few reasonably good days, Ray and I both had a real downer on Sunday. Megan needed to go to Hemel so Ray drove and I tagged along. Ray and I crept along like a couple of snails, we didn’t feel well enough to manage our normal walking pace and came home as soon as Megan had finished her shopping. When we got back Ray went off to bed and I followed soon after, we both felt better after a snooze. It has been a while since we both needed to rest in the afternoon, we slept well overnight too so we obviously needed it.
I had my quarterly B12 injection in my bottom for the first time on Monday, it used to hurt when I had it in my arm but this time I didn’t feel it at all, that was a pleasant surprise! Tomorrow I have to go for the Pre-Op assessment for the operation to remove the Scleral Buckle in my left eye. That will be interesting, I expect to have to go through the whole explanation about why I can’t have blood or blood pressure taken from my arms. I wonder if I will need a cannula for the operation and if so will that have to go in my leg? The implications of having Sentinel Node Biopsies to both armpits begin to have more significance when needing medical treatment.
Ray saw his GP for a check-up, he will be off work until after seeing Dr Burn in early February, if Dr Burn is in agreement then he can go back part time to begin with. Ray and I went over to London Colney in the afternoon, I didn’t want him driving all that way on his own as he has only just started driving again. Ray dropped me off at TK Maxx and then went round to his head office. His colleagues were pleased to see him and he was able to have a chat with his Chief Exec about a return to work plan. Prior to his return, Ray will have a meeting with his Chief Exec, Heath & Safety Advisor and Occupational Health Advisor to agree the phased return plan, workload and any other issues relevant to his future working arrangements. It sounds like they have his best interests at heart which is very reassuring.
Another pleasant surprise on Monday was having my blog listed in the weekly round-up of ‘best blogs’ on the ‘Journeying Beyond Breast Cancer’ page: http://journeyingbeyondbreastcancer.com/2015/01/10/weekly-round-up-94/
I was honoured to have my blog featured, I have been following the page for a while and have read some brilliant articles there, and on the weekly round-up list, so to have mine included gave me a real boost.
I have been brought quite low by events last week and am still struggling with the implications to my future happiness. I am trying to forget about it but it is not easy to keep it out of my mind, it is night time when I should be sleeping that it really plays on my mind. I can only hope that this situation will improve with time.
But I have had my mood lifted this week by kind friends sending supportive messages to me on Facebook, and for this I am grateful, you have kept me out of the pits dear ladies, thank you!
Today, Ray and I went for Tuesday Relaxation at the Lynda Jackson Macmillan Centre, after the session we went round to the Radiotherapy Department so that I could ask for some advice about my nipple blister. The Radiotherapy Nurse was very helpful, she gave me some lotion to use, and a medicated dressing to try as well. She also confirmed that I should not think about going back to work until the blistering and sore skin is healing well. The skin in the area which had the intensive booster treatment last week is getting more tender and red with each day, it could continue to do so up to four weeks after finishing my treatment. It isn’t quite like sunburn as the redness begins in the area in and around each skin pore and then gradually spreads out to the surrounding skin, it is beginning to itch sporadically but it is bearable.
But I remain optimistic, the skin and physical scars will heal soon, the emotional scars will take longer, maybe even my lifetime, I’m not sure if having Cancer has changed me, maybe it is really too soon to tell. When I am back to my ‘pre-cancer treatment’ routine I may become more aware of changes in my outlook on life. Having the outlet of this blog is wonderful, I have always found it easier to express my feelings in writing, and in posting blogs I have been better able to understand and work through what has been happening to me since being called back after routine Mammogram screening for biopsies and then receiving the diagnosis.
Many years ago, when I was a babe in arms, my Nana Rose was looking after me with Great Aunt May, my Nan was one of fourteen children (twelve surviving past infancy). Great Aunt May had put me in my nightdress, one of those with a pull in tie at the neck that they no longer make because of babies being suffocated, and had laid me in my cot to sleep. Well you can probably guess what happened, my Nan came in to check on me and I was blue and not breathing, this was before mouth to mouth was common knowledge, my Nan says she undid the nightdress, took me outside, and prayed to God to save me. She used to tell us this story often, and she said that God had saved me for a reason and that I would have a special purpose in life.
I don’t know what she was hoping for, but I’m not sure I have achieved anything special. But maybe writing this blog, sharing my experiences of Breast Cancer to help others is it? My son and daughter each have a friend with a mother recently diagnosed with Breast Cancer, they tell me that both women have been following my blog, if my words can help, then yes, I guess that I have achieved something.
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.
Woke Thursday morning still feeling weary, dizzy and a little frazzled. Before getting in the shower, I peeled off the remaining tape covering the wounds on my breasts, the left side is clean and tidy, the right is a little lumpy, but overall they don’t look too bad which is a relief.
After having breakfast, I tried to concentrate on doing some craft work, then tried watching TV, listening to the radio, and working on the laptop, but couldn’t focus on any of it so gave up, put on some calming meditation music and snuggled down on the sofa with a blanket and my book. Needless to say I was soon asleep. I woke a couple of hours later feeling much better, my brain had emerged from its cotton wool fog.
I had a visit from Rebecca, she and her children lived opposite us for a few months until recently. A lovely lady, Rebecca brought a gift of luxury hand and nail moisturising lotion for me and a bar of chocolate for Ray. Thank you so much Rebecca, Ray and I are very touched by your thoughtfulness.
After having the discomfort of travelling and the soreness of the Seroma on Monday, I had taken Co-Codamol before setting off for the hospital, I’m glad I did, the journey was certainly less painful. It was very busy in the clinic, we waited just over an hour to see Mr Cunnick, and mine was the last appointment of the day. It doesn’t bother me, I understand that the NHS is stretched and always go with the expectation of a wait. We got a coffee each, found some vintage car magazines for Ray to look at and I read my book.
The news is good, the tumours were 17mm and 16mm, so a little larger than the original scan estimate, the margin (the healthy tissue surrounding the tumour) for both was clear of cancer cells meaning that enough tissue has been removed and I do not need to have further surgery. Mr Cunnick sorted out the Seroma which had re-occurred in my right armpit, there wasn’t so much this time, around 40 ml of fluid.
Apparently there are still some tests being done on my tumours for which the results will take a few more weeks, these will determine if I need Chemotherapy. Ray and I were a little concerned as we thought the Lymph Node Biopsies were intended to do this. But to be honest we have been given so much information in a relatively short space of time that it is easy to get things in a muddle, or to forget exactly what has been said.
Ray & I can’t remember the terms used but basically, these tests will determine if there is a risk that cancer cells have broken away from the breast tumour/s and spread to another part of my body meaning that I will have to have Chemotherapy. Chemotherapy can kill these cells and so reduces the risk of the cancer coming back. Mr Cunnick did assure us that he thinks it very unlikely that the cancer has spread, so I’m holding on to that thought.
Mr Cunnick was happy that my wounds are healing well, and after some consideration decided that I will have Tamoxifen to start immediately and to continue for five years with the possibility of extension up to seven years. This may be changed in future as the guidance and Anti-Cancer medication options progress. One of the benefits of Tamoxifen is that it increases bone density which is reassuring, a downside is that initially it will increase the incidence of hot flushes but this should settle down over time.
I had a few questions for Christina the Breast Care Nurse, I have been a little concerned about being so tired and needing to sleep during the day, Christina reassured me that although I do not feel that I have been stressed, she says the whole process from biopsy through to operation would have been stressful even if I have not been aware of it. She also said that at two weeks post-op my body will be doing the most healing internally now and this will make me tired. I was worried about how much time I might need off work but Christina said that as working on a computer all day involves using all the areas of my body which are affected by the operation I should not expect to be back at work quickly and that when I do go back should start with half days to begin with.
So today I have been listening to my body which has been telling me to relax and have a snooze, I started writing this entry yesterday evening and have been working on it on and off all day. My concentration levels are very inconsistent so everything seems to take ages. So looks like TV and reading it is then!
After Monday’s bout of self-pity I woke up yesterday deciding to be more positive – resolved to put on a favourite dress, sparkly cardigan, some twinkly make up and a better attitude.
I had the busiest day since my operation. It was bright, sunny and warm, I was meeting my friend Jenny and her little Granddaughter Ruby in Chesham for coffee, so decided that I would walk down and that it would make sense to hang about in town, have lunch and then walk to the doctors for my mid-afternoon appointment.
Jenny and I had coffee, tea and a catch up at ‘The Little Orchard’, one of my new favourite cafés. Ruby had milk, snacks and a scrabble around, she is not quite crawling yet, very sweet little girl she is too! It was lovely to see Jenny, we have known each other for around ten years, when I was Belly Dancing we would travel together to class and to gigs with the student dance troupe ‘Anuket’.
After Jenny left to take Ruby home, I wandered around town, browsing in the shops until lunchtime, I bought a ‘meal deal’ and took it to Lowndes Park for a solitary picnic in the sunshine! As it is half-term there were lots of children and families out enjoying the fine weather. The ducks, geese and gulls are very well fed by the children so they weren’t interested in my sandwich, and I was really glad to sit down. At this point I realised that I had made a bad choice, I felt tired and sore, I should have got the bus home earlier, and tried driving to the Doctors. So I took a very slow walk up to the Surgery, arriving very early for the appointment but relishing the chance for a long sit down, I know I had over done it as I wasn’t even interested in reading, a most unusual occurrence.
My doctor wanted to sign me off work for another four weeks but I hope to be well enough to return sooner that this, so we agreed on two weeks and a prescription for Co-Codamol of my own so I don’t have to continue raiding Josh’s!
So the choice was call a taxi to take me home or walk, I had a long think about this and decided to walk as the surgery is half way home from town, the downside was that the remaining walk is all uphill. I just about managed to get home, make and drink a coffee before falling fast asleep for a couple of hours.
It was just the two of us at home in the evening, Ray didn’t feel like cooking, and I wasn’t up to it, so we decided to go out to eat, we went to The Bellcote, a new pub/restaurant on the road to Ashley Green.
So lesson learned – I am still being impatient with my progress, I need reminding that I have four operation sites and that they need time to heal, there is still significant bruising to my breasts and underarms. There is some remaining blue dye in my left breast, maybe it is taking longer to clear because this had the deeper lesion.
I do feel that Surgeons tend to be over optimistic in their estimations of recovery time. Last year I had surgery for a Detached Retina in my left eye, when I asked about recovery before the operation, the surgeon said I should be healed enough to be back at work after two weeks, but in reality the actual time was four weeks. I have heard varying times for recovery from having ‘Bilateral Wire Guided Wide Local Excision and Sentinel Node Biopsy’ so tried searching Google, but the results do not shed any light on it so I’m really still in the dark about what to expect.
Today has been a ‘Duvet Day’, apart from doing two loads of washing, emptying and re-loading the dishwasher, I have slept and relaxed. To be honest I feel very tired, and from the increasing tenderness and hardening under my right arm, I think I have another Seroma beginning to build up. I have my follow up appointment with the Surgeon tomorrow afternoon so will be able to get it checked out whilst I am there.
I phoned work and spoke to my Manager today, I was describing what had happened on Monday and about the cause and treatment of the Seroma but got a little carried away. I am never sure just how much information to give people, it is harder to judge on the phone if it is too much! Think I made him feel a bit squeamish, whoops! Must be more restrained in my descriptions in future 🙂
So my resolution for tomorrow is to take it easy, a short walk to post off my Sickness Certificate, to not to buy anything from the shops, to put on some happy music and have a go at finishing the Dream-catcher, or maybe just read.
Last week I noticed that I had some swelling under the scar in my right armpit. Over the weekend it became painful, particularly as my bra lays across it. So this morning I phoned the Breast Care Nurse for advice, she has asked me to go in to Clinic this afternoon as I may have to have the fluid aspirated, sounds like a thoroughly enjoyable experience! I will report back later….
The pain in my armpit made me reluctant to do my exercises, the booklet says that when you have swelling that it is best not to do them until consulting the Breast Care Team, so I decided this was a good enough excuse to give them a miss today.
I did some more work on the Dreamcatcher I started last week, the weaving is now finished, I am now wrapping the ring, once this is all done I can add the fringing and some twinkly bits 🙂
It was a very pleasant walk down to Chesham in the sunshine to meet Ray and then go on with him to Wycombe Hospital. I am so grateful that Ray is willing and able to drop everything to get me to and from hospital, and being there for me every step of the way.
I was seen by the Senior Nurse Practitioner, the aspiration involves using a big syringe to draw out the Lymphatic Fluid and relieve the pressure. The needle is inserted through the scar tissue, by this time the discomfort from the swelling was so persistent that I didn’t notice the needle at all, and I had Ray to hold my hand. The nurse drew off 60ml of fluid, it is a yellow/brown colour (like the fluid in a blister), after the pressure was released the pain was less intense. This collection of fluid is called a Seroma, sometimes it will refill, so may need to be aspirated several times over a few weeks before it goes away completely.
Apparently my body will learn to divert the fluid back in to the lymphatic system rather than just dumping it in my armpit which is what it is happening at the moment.
Fortunately my left armpit is unaffected (for now), however, I feel rather battered about after the travelling and stress of an unexpected visit to hospital. Although the pressure has gone, I still feel sore, weary and a little down. I just want to curl up with a snugly blanket.