It’s that time of year again, Autumn has passed, the leaves have fell off the trees, the clocks have gone back, the days are shorter (thankfully the shortest day is gone) and it gets colder with Christmas and 2016 over and winter is here.
I don’t like winter, I’m much more of a summer person with sunshine, dreaming of sun, beaches and warm days and nights. We went away for a week just before Christmas as we hadn’t had a holiday due to my treatment and surgery for additional problems with secondary breast cancer which has been ongoing all last year. It was nice to have some sun and warmth on my body.
It all started again in February 2016 – always seems to be February when anything happens with me – my original diagnosis February, rediagnosed with secondary breast cancer 4 days before my 7th anniversary which is the 15th February. In 2015 with my lymph nodes again which had started around (you guessed) February. Then 2016 with more chemo… yeh – bloody February again. I’m hoping that my bad luck in February is well and truly over…
So the worry begins, I had my last scan around 6 weeks ago and with the dark nights and winter drawing in I was having the dark thoughts and feelings and worries. My shoulder isn’t right and I will talk about that later.
I’m not very good at saying I don’t feel right so I carry on, as I have always done, but after 4 lots of chemo over nearly 10 years, reconstruction, neck resection, my sternotomy and recovery, then chemo added in, I’ve had to admit to quite a few things that just aren’t right.
When I had the LD flap nearly 10 years ago I put up with the pain and tightness with the scar. I still have problems with it and I’ve noticed now when I exercise I seem to get more painful spasms in my breast probably due to scar tissue and then over working the muscle. I had and still have a very good range of movement in it, but still it does cause pain, sometimes a shooting pain that makes me shout out and hold my breast until it passes. I had physio around 3 years ago on the area which helped but it can still be painful and of course the breast area is dead (yes completely dead) as nerve endings have been affected and I can’t really feel the skin or the breast area. Of course I’ve had radiotherapy in this area too so it makes the area and skin tight.
The next situ was neck surgery. I had a big triangular chunk of skin, tissue and all the lymph nodes taken out of my left side of the neck in October 2015.
This was as the nodes were still cancerous and it is where the secondary breast cancer had also metastasized too originally. So 2 weeks of radiotherapy on my neck and the neck muscles are exceptionally tight in the area and pull a lot.
So February 2016 it was found that I had a small spot of secondary breast cancer in my left shoulder bone (this was as well as the sternum I am mentioning below). I had radiotherapy on the front and the back on the shoulder to try to stop the cancer.
Sadly that didn’t zap the fucker and it was still there even after radiotherapy. The cancer there still gives me quite a bit of pain. A horrible dull ache which can make me feel quite sick sometimes. Yet I’m still not on stronger painkillers than paracetamol and ibuprofen (that’s when I take them). The strange thing is if I exercise i.e. run or Nordic walk I don’t have pain, yet just simple walking it gives me a lot of grief! Go figure.
After having a partial remission (which means that the cancer in my sternum and shoulder bone had reduced but not fully gone) with the course of chemo, I was then referred to have the sternotomy surgery. I knew that this was a big operation and would have lasting effects on my body, but I hoped I could work around this. And I did, 9 days after surgery I attended the Breast Cancer Now Research Symposium 2016 which was a 2 day conference. Then 7 weeks after surgery, I held the first pilot #abcdretreat for exercise for breast cancer patients and I was able to run a little on the 3 mile running session. I had tried running a week before I held the retreat and cried all the way around the circuit because I knew things were different and I couldn’t do what I was able to do previously.
To give you an idea of how it affects me think of an A5 book, now stick that book (which feels heavy like a brick) to your chest on the sternum and try to run with this on that area. Also the pectoral muscles have been moved to the middle of my chest and crossed over each other, up near my throat, and the tightness again with this is horrible. It pulls across and towards my neck and sometimes feels like I can’t breathe or swallow. Sometimes it can cause me to be a bit sick.
I talked to my Oncoplastic surgeon about the sternotomy when I saw her about the swallowing issue I have with it and she does think I may have to have further surgery as the new sternum may be too high to my throat. I can see it is too high and I hope that this may be a simple operation to resolve. I am the eternal optimist…
I had shooting pain in the neck on the retreat when I ran so after that I decided to give my body a rest from running until my 12 week OK from the Oncoplastic surgeon. I had already seen my Oncoplastic surgeon around 9 weeks after surgery and she said not to cycle or yoga until the 12 weeks was up, so I needed to listen to give my body time to heal and recover before I went back to these exercises. Can you imagine having something taken away from you that you enjoy and love doing? It’s so hard to see others run and know that I can’t do anything like they are doing.
Meantime, I was trying to keep moving by get the 10,000 step in every day by walking and also Nordic walking with U Projects (@uprojects4u) and friends.
So I’m back to running (well running walking, running walking and trying to increase the running time) – again with the help of @Uprojects4u – but I really wonder if I will ever run like I did before say a mile or two without stopping. Who knows, I’m just thankful at the moment that I can run the little bit I can. And I know I have to stop beating myself up about this, it’s only 25 weeks since my sternotomy and just 9 weeks since I finished chemo so I’m not doing too bad considering, I guess. Sat here typing and moving my arms across my chest I can feel the crunching on my sternum, it’s a weird feeling and one I don’t think will ever get any better.
In bed I have to lie down gingerly as it still hurts. When I lie on my back after lying down, I feel the pecs pulling across my chest a real uncomfortable feeling. Again it pulls at my throat. Turning on my side is something I can only do for a short time, after much grunting and pain I can get on my side and then it feels weird as the bones or composite kind of move and then the sternum audibly creaks a few times as it settles. As you can imagine, I don’t stay in this position for long. Again gingerly, I can lie on my front but with my right hand under the pillow to somehow prop me up. Again, I don’t stay in the position for long but it also helps to stretch the tissue in the neck area. Looks like I will never sleep comfortably on my front again, ever.
Illness, virus, flu
After returning from ESMO in October with a sniffle I had my chemo the next day and progressively went downhill. Sneezing is particularly hard still with the sternotomy as the ribs were reattached so it’s still very painful to sneeze and hard to cough. I probably should have called the chemo hotline but got an emergency appointment with the GP surgery and she prescribed amoxicillin. I ended up with full blown virus/flu and the following Sunday and this time had to call the chemo hotline as I seemed to get worse and they said I had to go in that evening. I arrived on the ward thinking I was going to be sent home with tablets straight away and unfortunately they decided to keep me in. I was given antibiotics by bolus injection through my portacath and then hooked up to fluids. I did feel that the antibiotics started to work quicker and I left the next evening. This was just after a visit by my Oncologist Dr G who had seen my name on a list of patients admitted and wondered what was wrong. How kind! So I was sent home with another course of Augmentin and a course of Tamilflu (!) to cover all issues (bird flu, foot and mouth?) and I finally started to feel better.
I am very very wary about being around people with colds and coughs and I have specifically moved away from people who I can hear and see are ill. The last thing you want as a patient is to be infected and admitted to hospital, it’s not nice and can cause many complications and problems especially if you are on chemo or treatment.
My feet have suffered the worst in the latest round of chemo. My fingers still tingle and are a bit numb but my feet are quite dead. This only happened after the last two chemos so don’t know if the cold socks and gloves were cold enough to freeze the extremities enough. Again it just adds another problem to the list of issues I already have but something I guess I’m going to have to live with.
My friend Julia from BCCWW recently went to the “Late Effects Conference” which was held by MacMillian to talk about the consequences of treatments. As you can see from my list of problems many other effects of treatment and surgery last a long time, a lifetime for some people and we have to deal with these every day. These are the untold consequences of cancer. People expect you to get up and get on with life as it was and it will never be the same again.
Many young people like me have the added issues of early menopause, fertility and sexual health problems. Fatigue, depression and many other psychological or physical problems. Add these to the above and you should have an idea of what an uphill struggle it can be for people.
One thing I don’t seem to get a lot of is fatigue. Now I don’t know whether I am just programmed like that but you would think that everything that I’ve been through that I should be dead on my feet but I’m not. I generally feel full of vitality and energy. So I don’t know what the reason is for that, whether it’s through a healthy diet or through the exercise I do or just because I literally keep myself busy all day doing something. If I sit down it’s to work, if I get up it’s to exercise or do something. I sleep on average 6 hours as I don’t need extra sleep. I honestly don’t know but whatever it is I’m glad I don’t feel the fatigue as that I know is debilitating and I wouldn’t be able to function, be the Mum and parent I need to be or do what I do with ABCD if I was. I’m thankful of that.
I hope that I have given and insight into the problems that people like me with secondary breast cancer face, and if you have further treatments or surgeries which inevitably with the nature of the disease you have to do, then there are more effects to deal with or more pain.
Despite my black thoughts and feelings about the chemo not working, the results were positive in that the chemo IS still working (even though I’m still having pain in my shoulder). The size of the cancer in my humerus (not funny) which is at the top of the bone as it fits in the socket, has gone smaller. The first 4 cycles in the first ½ of the year and now the 3 after surgery has reduced it more. And it’s nowhere else (at the moment) in my body which is a huge sigh of relief. So because I’ve been battered with treatment and surgery all year Dr G said to have some time off chemo.
I resumed normal three weekly perjeta and herceptin treatment on the 13th December and have continued since then. The other news was that all looks ok in the sternum, no signs of cancer, but of course there is quite a lot of inflammation in the area due to surgery. Crying with relief ensued when I was told and the break from chemo will help me recover as they know its hitting my bone marrow hard and I need to build myself back up a bit. It’s not easy to keep continuing chemo even if I had wanted to. Been feeling and looking quite knackered before our holiday and I needed to mentally prepare myself for whatever the next issue is. I am hoping that I will have a longer break from this onslaught of chemo. I’m keeping everything crossed for February to be WITHOUT the usual trauma that I’ve seen over the last 3 years.
A happy and healthy New Year to you all x