So, life is very different to how it was when I last posted a Blog. I think it might be time to pick this up again. But not tonight, I have had a busy day and it’s time to sleep.
It has been months since I wrote and the reason I have been prompted to write today is that both my nieces have started their own blogs this month and reading what they have written has motivated me to write.
So, an update – I had the first of my five annual Mammogram screenings and check-up appointment in November. I am delighted to announce that the result of my mammogram shows NED – No Evidence of Disease. So I am now officially in remission, fabulous news!
However, despite being pleased, I admit that I wasn’t as excited about the news as you might expect, not because I am not grateful, for I certainly am. It is more that it felt more like the next step along the way to healing both physically and emotionally.
Looking back, my last proper blog was written on 2nd May 2015, it had just been agreed that I could reduce my working hours and I have been working three days a week since then, this has been significant in me feeling well enough to keep working, both at my paid employment and craft work.
There have been days recently where I have felt very low, the feelings were very familiar, anxiety and low mood hit me unexpectedly in early January, there were days I so wanted to stay home with a soft, fleecy blanket to snuggle under and my kindle. But I managed to grit my teeth and get myself to work, it took a lot of effort and at times I sat at my desk, anxiety twisting in my stomach and tears threatening when I would have picked up my things and walked out of the office. January has been a difficult month for me for many years, I probably have Seasonal Affective Disorder (SAD), but having not been formally diagnosed, I can only suppose this to be the case. I have a Light box on my desk at work and have started using it again, I think it is helping, I am beginning to feel more ‘me’.
On the 12th January, I posted on Facebook: ‘Two years ago today I was at the beginnings of another occurrence of depression. Today I am fearful because despite still being on maximum dose anti-depressants, I am heading downwards again. Those familiar feelings of despair and panic are re-surfacing. The wish to hide away somewhere warm and dark with a blanket and my kindle is just about all I feel I want to do. A re-assessment of life might be worth considering, perhaps it is time to make changes?’ I understand that some may not approve of putting such personal and negative sentiments on to social media, but I am blessed with some wise and caring friends who have supported me through this medium for many years and their comments and good wishes pick me up.
A dear friend commented:-
“”The wish to hide away somewhere warm and dark with a blanket and my kindle is just about all I feel I want to do.”
I understand those sentiments Dee, I’ve been somewhere similar myself. I am not sure what to say to you, as everyone’s situation is very different. If I could find a positive uplifting message that would make a difference, I’d write it, but the part of your post that did give me a lift was “A re-assessment of life might be worth considering, perhaps it is time to make changes?”
Quite possibly yes. I would caution you not to make them all at once, as that too can be overwhelming. One step at a time Dee. You and your family have had a lot going on in the last couple of years.
I know you’ll also have heard this, a lot, but please make sure you speak to someone in person about this – whether it’s Ray, a counsellor, your GP, someone.
I won’t say “it’ll be alright”, I don’t know that, and can’t say, but what I can say is that I hope and pray that you can follow through on the final words in your post, and take first steps in clearing your way through the miasma of depression ❤
For her words I am thankful, this lady can be relied upon to give advice is relevant and thoughtful and for that I am grateful. Yes, the last few years have had many challenges, I wonder whether staying strong through it all has left me emotionally exhausted with depression as the resultant fall-out.
So, one year on from the traumas Ray and I experienced at the hands of Bi-lateral Breast Cancer and Transient Ischaemic Attack (TIA) do still affect our day to day lives. Ray has days where he struggles to make it through work and will go to lay down when he gets home, just last week he went to do the grocery shopping and had to call me to go and pick him up as he felt too ill to drive home safely.
I have radiation damage to my left shoulder and upper arm, I am learning to live with nagging aches and on bad days, noticeable pain. It is better to keep the area warm but the hot flushes get so bad some days I need to put a fan on, which makes it cold and painful.
But I am grateful to be alive and well, to have my family around me, and for all the good things I am blessed with. Life has sent challenges, but I’m still standing!
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. 🙂
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.
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.