Dealing with breast cancer and HMS/EDS

It's that time of year again, October, no I'm not talking about Halloween, or the beautiful russet colours of the leaves on the trees, or the fact I had to find a sweater out yesterday because the weather is turning chilly. No I'm talking about breast cancer awareness month!

I was diagnosed in 2005, I didn't find a lump myself, I was turning 50 in the July (yes that means I shall be 60 next year, eeeeeek!) I had an appointment come through the post to go for my first routine mammogram. I knew you are sent an appointment for a mammogram when you are 50 but this was the beginning of February, my 50th birthday was not until mid July, how dare they send for me 5 months early?! I felt slightly offended, how could they send me for a mammogram at 49, I had ages to go until I turned 50, I hadn't noticed anything so did I need to go?

I put the letter in the bin!! Stupid, especially considering what happened, but I didn't want to go, felt a bit embarrassed, felt slightly miffed that at 49 I was being sent for a test meant for a 50 year old, I didn't want to be 50, I certainly didn't want any early reminders! I didn't need one anyway! How daft was I? Luckily my husband, Graham, fished the letter out of the bin when he realised it looked official and told me I was going, no arguments I was going. It was half an hour out of my life, I didn't even have to go to hospital, it was at a mobile unit in the next village, parked on the clinic car park. I hate hospitals so that did make it easier.

The mammogram didn't hurt, slightly uncomfortable and a bit squishy, but ok really!

Three days later a letter came to say there was a problem, I needed to go to the breast unit at hospital. I shook when I opened that letter. I cried. I rang Graham, I cried over him. He told me try not to worry, it might be nothing.

When we arrived on that Tuesday I was ushered straight through to have a scan and needle biopsy, I asked straight out do I have cancer? I was told yes, they did think it was cancer, you could see on the scan the tumour was calcified, a sign it was not right. My breast was numbed and a long thin needle inserted into the tumour, it didn't hurt surprisingly. Everyone was so kind, so caring. I had to then go out into the waiting room and tell Graham they thought I had cancer, it was very hard to do, he said maybe they are wrong, perhaps the lab results will be negative. I knew though.

We had to return next day for the results, yes it was cancer but they had caught it early, it was 1cm, I would have an operation to remove it, probably followed by 15 sessions of radiotherapy, that would be it. No I shouldn't need chemotherapy.

Telling my elderly mum and my grown up son and daughter was awful, I tried to keep positive but it's hard and I was scared. Mom couldn't speak, my daughter shook for hours, my son was quiet but trying to stay positive.

I had my operation a few weeks later, it took longer than expected, when I came round the surgeon said he removed a lot of tissue to ensure nothing was left, he also removed 13 lymph nodes to test.

Soon afterwards I went back for the results, the cancer was grade 2, it had spread to three lymph nodes making it stage 3, I needed chemotherapy, it was fast growing and aggressive. I needed aggressive chemotherapy to combat the disease. I had to fight. Devastated is the word for how I felt, how we all felt. I wasn't expecting to be told such news and I was very frightened.

Apparently I had shown signs of cancer had I but known it, Orange peel skin and dimpling, it never crossed my mind that was a sign. Now I know I urge people to check themselves carefully, go to seek help if you find something. It could save your life.

I was very scared about having chemotherapy, I knew it could make you feel so ill and I didn't know quite what to expect, would it be tablets to take, injections, a drip? Would I loose my hair? It was fear of the unexpected, as well as fear of the chemotherapy, how long would it take, how poorly would I feel? Could I go through with it? Having seen my father in law go through treatment for bowel cancer I had actually told Graham I wouldn't want to have chemotherapy, I had said in the past I would refuse it, so he was very worried when it came to it that I might say no I can't go through with it. When I was faced with the reality of my own situation I realised I had a lot to live for, a wonderful husband, two brilliant children, they might both have been in their twenties at the time but they were still my babies, my lovely mom, great family and friends who rallied round us to show their love and support, an invaluable thing in itself. I had to have chemotherapy, I had no choice. I owed it to myself and my loved ones.

The first few sessions involved a nurse putting an iv needle into the back of my hand and very slowly pushing the bright red epirubicin drugs into my body, she gently rested my arm on a pillow and sat in front of me, chatting all the way through to keep me distracted and relax me. It took over an hour, I sat on a comfortable recliner armchair, as did other patients having various kinds of chemotherapy and Graham was able to sit with me. I had to have it every three weeks, and I had four sessions. After the first session I was very sick, despite being given anti sickness medication, and eventually had to have the district nurse come in to inject my anti sickness as I couldn't keep it down, the emergency doctor came to see me at home after that first session and it was him who sent the district nurses in to me. After five days thank God it stopped and I began to feel a bit better. I felt spaced out but by the third week I felt better, though not relishing the idea of the second chemotherapy session. I had to have them every three weeks.

I saw my consultant before my next session and told her how sick I was, she doubled up the anti sickness and from then on I was sick on occasion but mostly felt sick for the first week at times then was not too bad for the rest of the time, a bit tired and spaced out but I rested when I needed to and everyone rallied round to help. My hair started to fall just before my second session, it got thinner and thinner, coming out in clumps, it would be all over my pillow, the furniture, everywhere. I had a shower on the Sunday before my second chemotherapy the next day and most of my hair disappeared. Thankfully I had already seen the wig lady at hospital and had her number. I rang, reluctantly as it was Sunday, and she was so nice, she had the wig I chose, come over to my home she said, I will shave off the rest of your hair and fit your wig. Once my hair had gone Graham told me I looked like my dad. That helped. Not!

Everyone said my wig looked good, but it felt uncomfortable and a bit itchy, I prefered wearing a bandana. The positive to having no hair was not having to style my hair, which I'm no good at, I just popped my wig on.

After the first four sessions of chemotherapy finished my radiotherapy began, you lie on a big table with a huge machine turning round you and laser beams directed at the spots to be zapped. I had 15 sessions, my skin burnt quite badly and became infected as the blisters that formed burst, so I had dressings on. Nobody warned me about that.

My next sessions of chemotherapy were different, I had it via a drip this time and it took over an hour. I had to take an antidote to stop the chemicals working after several hours which was a bit scary. I had one a week for two weeks, then two weeks off before the next session, eight lots in all. I felt a bit better than with the first type of chemotherapy though it could make you prone to bladder infection as it sat in the bladder, I only experienced that once, and wouldn't want to again.

Chemotherapy was due to finish in October, we decided to have a few days away in September as we needed the break. On our second day we had a phone call to say my lovely gentle kind mom had been found dead, she collapsed on the floor in her flat, our daughter found her very much loved granddaughter, it was too late. We were heartbroken. Mom was 84, she had been fine, it was unexpected and a terrible shock. The bottom dropped out of my world. Dad had passed away two years previously and I was still struggling with his loss. To loose mom was unbearable, she was my rock. I got it into my head she had gone in my place, then I thought I wouldn't make it, she would take me with her and had gone to look after me. Stupid, irrational thoughts but my life was turned upside down and I couldn't cope. Thank God for family and friends, thank you for all the positive vibes, the cards wishing me well, the flowers and chocolates, the love and support. Thank you from the bottom of my heart. Xxx

My chemotherapy finished, I carried on because I knew it's what mom would want and I looked forward to the end of needles and hospitals.

It didn't work out that way. Just before Christmas I found out my tumour was HER2 positive, a lot of people with the same disease had been fighting to get the drug herceptin approved, it was expensive, many thousands of pounds, people had died waiting for NICE to approve it, the fight was all over tv, newspapers, radio. I prepared to join in.

I was lucky, my doctors put in a request for me to have herceptin, I was told it was a waiting game. I had a phone call just before it was announced on the news, from the primary care trust, to say I had been approved to have herceptin. Then it was announced on the news that herceptin had been approved for use on the NHS, for everyone.

And so began yet more treatment, thankfully unlike chemotherapy I had before herceptin didn't have too many side effects and I felt OK on it. I had to go every two weeks for a year and again it was administered by drip into an iv in my hand, it took an hour and a half each time as it had to be very slow, so I did a lot of reading! The first session made me go very very cold and I passed out, frightening my husband and the nurses, but I was fine after that first time, though did need to wear warm clothes as it could make you feel chilly.

My hair had started to return in the September while still having chemotherapy and by now I had a head full of curls, most unusual as my hair came back in tight curls, very soft and fluffy much as it had been as a baby! I even went abroad for my daughter's wedding in August of 2006 whilst having herceptin so you can see it wasn't so bad, I could never have managed it while having chemotherapy.

It's now 2014, I'm still under the hospital as the cancer was so aggressive, I was discharged from oncologist this year and have been told I should be discharged from the surgeon next year. I am cancer free and alive, despite my diagnosis, my family and friends helped me through my two years of treatment and I am eternally grateful for the love and support. It's almost ten years since I was diagnosed with an aggressive fast growing cancer and I'm still here to tell the tale. I have other health issues, hypermobility syndrome, arthritis, degenerative disc disease, but that's a whole other story. If I can do it, you can do it.

If you find a lump, if you notice strange changes, Orange peel skin, discharge, pain go and get checked.

If you are asked to attend for a mammogram, go!

If I had not had that mammogram it might have been too late, I might not be around to tell this story.

I am still here nearly 10 years later, so don't despair, stay positive, cancer can just get lost.

By the way I am now grandma to a beautiful four year old granddaughter, who I might never have met if I had ignored that letter. Now that's an incentive!

Love and good health to all. Xxx

Back spasm

I got up this morning only to have my back go into spasm as soon as I stepped out of bed, I was attempting to dress, shouting with pain as the spasms kept coming, making me feel as if someone was stabbing me in the back!
I've had muscle spasms in other places before, my ribs, my toes, my chest, but in the large back muscles they stop you in your tracks!
I took pain killers and my anti inflammatory, then I got up gingerly trying to move my body as little as possible, not an easy feat whilst trying to get to the bathroom then down the stairs. Good thing I was the only one home, everyone would have wondered what I was shouting for but I couldn't keep it in, the pain of a back spasm is incredibly bad and trying to move, albeit slowly and carefully, is very difficult!
I managed a few cornflakes for breakfast and even though the sun was shining and it was a warm morning I realised I just had to sit and rest to wait for the spasms to pass and for the medication to take effect.
Eventually I deemed myself just about OK to go out, I can't walk far so I use a mobility scooter these days so I moved very slowly and off I went. Slowly! The sun shone, the warmth of the sun and getting out into the fresh air helped, though my outing was rather painful I did enjoy getting out even if it was only for 40 minutes or so, it raises the mood rather than being stuck indoors. So even if you are in chronic pain, try and get out of the house if you can and get some fresh air and sunshine, even if it hurts, it helps you cope, it helps me cope.

PAIN AND COLD AND ARTHRITIS.

It's gone colder and I hurt, some people say it hurts more in colder weather when you have arthritis, some people say damp weather makes the pain kick in, but to be quite frank I can't say I have found my pain getting any better when the warmer weather arrives, I just feel pain all the time, no matter what the weather is doing outside. My pain increases when I overdo things, when I attempt to walk even short distances, when I sit for too long without changing position, particularly if the seat is not comfortable for me in the first place! I find the key is to pace myself, though it can be hard to recognise when you reach that point of having done too much, you often don't realise it until you have gone just a little bit further than you should and then it kicks in, ouch I must stop, but now I can barely move to get myself to a place where I can rest and be slightly comfortable. If a job needs doing, it's difficult at times to stop in the middle and think, I must rest, I must just sit down for a while. If you don't you know very well you will pay for it, but it's hard to just drop everything and stop what you are doing, and often very frustrating! I have been known to overdo it, not pace myself correctly, and not particularly pay for it the same day but the following day I can barely move and my energy has deserted me. Maybe it's adrenaline keeps us going at times we need to keep going, then when the body knows it can relax it gives up and won't let you do anything until it recovers slightly. I'm not talking anything in particular here, it might be the family round to visit and you make cups of tea for everyone, not even a meal together, and it will prove too much. It depends what you are capable of in the first place. To some people even just making a sandwich or a cup of tea is a big deal and requires more energy and physical ability than they have. One person's pacing can be very different to another's, same as one person's physical capabilities can be vastly different to another's. One problem with ehlers danlos hypermobility syndrome is that it is invisible, and even though a person may look fine to other people, that person may be in great pain. Your knee can just give way without warning, your hip can slip, and I can tell you that really hurts, your ankle just goes from under you causing a stumble, your back can lock, your jaw can get stuck if you open your mouth too wide to yawn! All kinds of weird and wonderful things can happen if you are hypermobile, it might be a good party piece when you are younger to be able to do the splits, but the consequences can be awful when you are older and your hips cause so much pain. It can be very difficult when your hip slips when you are walking along, this used to happen to me frequently when I was at school, I could do nothing to prevent it, I would just fall to the floor, the pain is excruciating. When your ankle gives way beneath you when descending steps or stairs and you fall from top to bottom the effects can be devastating, you can knock yourself out, break a bone, or even fatalities have occurred in people who have fallen downstairs, I hang on for dear life these days if I can't avoid steps or stairs! Loose over worked and over used joints can lead to arthritis as you can imagine, after all if something gets pushed and pulled around more than normal, it will eventually give way, or even break, so you can see why arthritis kicks in, and in a person with hypermobile joints it can start much younger than other people, I started with arthritis in my thirties, now two years off 60 my walking ability is severely restricted, I can just about potter around in the house, to get from lounge to bathroom, or into the kitchen for a drink, but I use a mobility scooter, or as they are sometimes referred to as a self propelled motorised wheelchair to get out and about, an aid I did not want to resort to but the pain was so all consuming before I gave in and started using it, my life was so severely restricted I was stopping in the house much more than was good for me, and I needed my independence. I still have pain, every day, but at least I can now cope a little better with my pain levels than I could before.

Its just such a rush sometimes.

Some of you who have ehlers danlos syndrome, whether it be the hypermobility type like myself, or one of the other types, will have experienced the embarrassing problem it can cause with toileting. Whether it be a sudden uncontrollable urge to "go", the onset of pain which can predict the need, the feeling of sheer panic and "will I make it in time?" This might happen on the odd occasion or it could be almost every day. Whatever happens, and however it happens to you, it can be, and probably is, so embarrassing you can't speak about it. I am cringing just writing it down here, I certainly couldn't give it voice and say these words out loud, not even to a good friend or doctor. It could get worse depending on which foods have been eaten, or you may have no idea what triggered the latest episode, I have discovered that peas, beans, sweet corn, onions, to name but a few, are now permanent "no no`s" in my diet, the pain and suffering after eating these foods can be terrible. Stress is another factor, however much I try to stay calm it's not always easy, certainly easier said than done, and if I get too stressed and it brings on an attack it's difficult to deal with. I am of course talking about ibs, irritable bowel syndrome, which seems to go hand in hand with ehlers danlos hypermobility syndrome, at least it does in my case. It's not just the pain, and the diarrhoea which is the problem, at least for me, it is the urgency, the feeling you won't be able to hold it, the fear of an accident. I think this may be due to the lax muscles and ligaments within the body, those tissues which are meant to hold things in place being weakened by the connective tissues being different in someone with this syndrome. Having arthritis too, and the associated pain that goes with it, walking is hard for me, and walking fast enough to get to where I need to be is such a huge issue, causing untold misery. I shall leave it to your imagination, believe me you don't want me to elaborate. Ehlers danlos hypermobility syndrome is invisible, it is multisystemic and complex, I walk, the little I can manage these days, with a stick. I use a mobility scooter to get around, I hurt all the time, both physical and mental, it's not easy to live so restricted a life. I often feel exhausted, whether due to the struggle my body has to function each day, the pain I suffer, or the inability to sleep soundly for long, or a combination of both. If you have the same, or similar problems as myself, whether it be eds, or ibs alone, I hope you feel just a little better knowing your are not the only one, and that someone else knows how you feel. Oh and loperamide has come to my rescue, more than once, now I couldn't do without it. I'm experimenting with a stress ball too, you never know, worth a try. 

Problems with bendiness.

I discovered, much to my amazement, and that of my teacher, that I could do splits at the age of five. We were in gym class and the teacher asked if anybody could do splits so everyone started to slide their legs outwards from the hip. The teacher put up her hand and called, no you slide one leg in front and one behind you, so we all started to try splits the way she told us and to my amazement I slid smoothly to the floor! The teacher looked at me with an amazed expression and said "did you know you could do that?" I shook my head, no I had no idea.
Of course I then discovered I could high kick, I could bend and touch not only my feet but the floor without bending my knees, and I could wrap my legs around my neck. By the age of nine or ten I was having trouble with my knees and hips, my hip would slip as I walked home from school causing me to fall to the pavement with no warning, and my knees would swell, which according to my doctor was housemaids knee ! He advised mom to bandage my leg from wrist to ankle and I was sent to school hobbling painfully, stiff legged as the bandages were so tight I couldn't bend my leg! Presumably it was meant to push out the fluid on my knee but just caused me great embarrassment and pain.
When in my twenties the back pain began, getting worse when I fell on black ice one at on my way to work, causing me to hobble painfully home, I later learnt I had ruptured two discs.
I managed for a while, I had physio and ended up at a back pain centre in a hospital in Manchester for three weeks. I learnt relaxation and pain coping techniques, and got back to work for a while.
Arthritis started to complicate matters, degenerative disc disease not helping and an unstable spine and knees which bend backwards contributed to my problems, and though I tried to keep going the pain often gets too much for me. I use a mobility scooter these days, I fought against it for a long time, especially as I was diagnosed with osteopaenia a couple of years ago and walking andk exercise keeps bones strong, but constant pain was wearing me down, walking was too difficult and too painful for me, using a mobility scooter gave me my independence back.
It's been 52 years since I found I could do splits and it was realised I am hypermobile, once the pain came it was hypermobility syndrome, now known to be the same as ehlers danlos type 3, perhaps if my doctor had even heard of this debilitating condition years ago I might have been treated differently, who knows.

Standing, walking. Wish I could!

Just been out for lunch with an old friend at a local garden centre, and although I was walking with a stick and mentioned that I have just had a mobility scooter because I cannot walk far or stand for long we still had to walk around the pet section where she looked for ages at the many things you can buy for hamsters nowadays because she has decided to buy a hamster for her daughter as a surprise for Christmas but has not yet bought the actual hamster! She bought things for it to chew on, a ball for it to run around in etc., so hopefully she will definately buy the hamster before Christmas now! I was already struggling just walking around the small pet section and standing for too long while she cogitated on which chewy thing to buy then on the way to the till to pay she decided she needed to use the toilet and left me standing next to her basket of hamster related goods while she skipped off to take advantage of the facilities which was not the best idea for me as just standing really hurts. So there was I, swaying from one side to the other wishing she would hurry up! Its true what they say, ehlers danlos mobility syndrome is invisible, even though I use a stick and walk relatively slowly it seems to go unnoticed, and I don`t like to make a fuss and say I am struggling so I suppose its my own fault as I suffer in silence. Its not even as though we were walking around for very long, but just a few minutes is often enough for me, it certainly was today, and the arthritis in my spine was causing, and is still causing, lots of pain. Its good in one way that people treat me as they would anybody else, but on the other hand when I am struggling it would be nice if, just for once, somebody noticed!

Pain in the side.

I don`t know if it has anything to do with my hypermobility, and ehlers danlos, but since about 3.30 yesterday afternoon I have been in agony!
I started having twinges in my left side, round about the area which would coincide with the bottom of my rib cage. The twinges got more and more frequent, and more and more painful, during the evening and by mid evening I was in agony with sharp stabbing pains every few seconds which made me wince and jump. The area was also very sore and tender to the touch and I could not even bare to have the material of my clothing next to the area so painful was it. The whole of my left side, from breast down to hip, radiating slightly round to the front and back was very very tender, though nothing was showing on my skin, no redness, no rash, no apparent swelling, yet I only needed to touch it and I jumped with pain. I tried to concentrate on the television, though I could not get myself comfortable, and by ten o`clock the tears were streaming down my face even though I attempted to stop them, the pain was just so fierce I could not bare it! When my husband realised how much I was suffering he brought me painkillers and a wheat bag, hoping the heat would help. I was wary about putting the wheat bag near to the tender area and I very carefully placed it as close as I was able, it took about an hour and thankfully the pains began to subside a little, soothed by the heat, or by the pain killing medication, perhaps both I don`t know, I was just glad the pain was a bit better! Eventually I decided I had to try and go to bed, reluctantly as I could not see how I would be able to sleep if the level of pain kept the same and I had to ask my husband to warm up the wheat bag once again. I laid it on the mattress and flattened it out, then carefully lowered myself gingerly on top of it. It took a while but eventually I managed to get a little more comfortable and I did drop off to sleep, though waking a few times in the night with the stabbing pains. I woke early this morning because of the pain and carefully got dressed and I have thought it best to rest today as moving around seems to aggravate it.
I have no idea of the cause but wonder if it has anything to do with my hypermobility and ehlers danlos, as I can move in a certain way and my ribs seem to dig in and hurt me. I have had something similar to this before, but not to this extent, not so long lasting and painful. Hopefully it will right itself, I don`t fancy yet another trip to the doctor!