Emelia’s courage shines daily, she doesn’t see it, but its there, in her humour, her empathy and her patience.

The Beads of Courage are a charity, each beans represents something, for example a chemotherapy session, having blood taken or a biopsy the list is long, Emelia was only diagnosed 2 months ago and yet her string of beads is already long. This is a great way to visualise what she has been through so far, especially when she is feeling low.

Last week was a tough one, the ward rang us Monday to check when she goes in for bloods, ready for chemo on the Tuesday, I explained we would be with them at 10am and they do bloods then, we wait for results and chemo starts tea time. On the way to the hospital on the Tuesday the oncology department rang asking when we would be there, for bloods, they explained ward was busy but expecting her. We arrived at 10am, bloods were not taken until after lunchtime. At 2pm we were informed that the results of the bloods were too late coming back so chemo will not be starting that day. There was no bed on the teenage side of the ward, but the side room on adult side would be coming available just waiting transfer. Shift change at 7pm, still sat in retreat (day room – fab room with kitchen, large TV but not working and pool tablet, sofa was okay but …) the night staff said there was a bed in one if the bays Emelia could use and they would put a z-bed next to it for me. This happened at 10pm, this is where the sofa is good but not for 12 hours. At 10.30 they took more blood, which we thought was strange. Later we found out they hadn’t taken some blood for liver functioning which is a standard test before chemo 🤷‍♀️. Emelia finally got her side room at midnight 14 hours after arriving. We were both exhausted, chemo finally started at tea time on the Wednesday, because of the long day and lack of sleep, Emelia wasn’t as physically ready for this round as she would have been. And its having a knock on now I think a week later. I haven’t caught up, so feel very emotional and tearful. Easter cheer has been hard to see and I am not feeling very positive or cheerful.

There was a small light, she had her MRI early as the consultant was concerned it was growing and the results show a slight reduction. This is good, we need time to process that its good news, its difficult when you are in the middle of it all and they suddenly decide to scan early to process it all.

Its hard watching her struggle this time, because of the anaemia, chemo and infection from the week before she is very weak and can’t walk far, this is frustrating her and she is finding it all too hard. She is questioning whether its worth it, if she going to die anyway. Its such a rare type and place to have cancer that they are trying their best to get rid of it, my understanding is that this type normally starts in the bones and then amputation is an option – but hers is inoperable due to the fact its wrapped round the artieries to the brain. We hear parents in the retreat talking about their children’s cancer being fully treatable – so I totally understand why she feels this way, but its the hardest thing to hear. Due to her research at uni, when she goggled her type and place, she got research papers up, and they were not get results/survival rates, this didn’t help. However this is where the courage beads came, I took them out the bag and said this is why you feel so crap, look at all you’ve have been through in such a short time, don’t be so hard on yourself, she is being injected every day with blood thinners, it hurts. She is in and out of hospital no sleep. Biopsy and scans not nice – this beads represent all of this, such a great visual aid.

I want to say things are picking up, but can’t her mouth is sore, her finger tips hurt and she is weak, stumbles about. She hates how she looks, her eye, the weight gain from steroids and lack of exercise – she did have a friend in the snow in the garden yesterday and I heard laughing so maybe things are improving a little – but so far the rollercoaster hasn’t slowed down, maybe next blog will be more positive. I find it hard to write when I am not feeling positive and difficult to publish too, but its the raw truth x

What a few weeks we have had, Emelia has been put through the mill, my journey was a rocky road this is like a very fast twisty rollercoaster mainly going upside down.

3 weeks ago she woke with a swollen hand and arm, we rang the hospital just to check this was nothing serious, they said A&E to check for a blood clot. Wasn’t expecting that. So another long day sat in A&E, she was very self conscious, was hot in her hat, but didn’t want to sit there bald, also her bad eye doesn’t look in the same direction as her seeing eye, so felt people were thinking she was looking at them. Unlucky due to her being Autistic i was allowed to be with her, we were there at least 5 hours. After tests that were inconclusive she was allowed home with antibiotics and blood thinning injections, as a precaution, with an appointment for Monday for an ultrasound. Mondays ultrasound showed a clot in the vein her PICC line is in (the PICC line is inserted into her vein in her arm, they use this to give her, her chemotherapy and to take blood from) the doctors in A&E said the PICC line was also not working. Nottingham insisted they did not want the PICC line removing, so now we start worrying that she can not have her chemotherapy the next day. She was told she needs her injections daily and after chemotherapy finished tablets for the rest of her life. The blood clot could be the result of the PICC line or the cancer, we did double check not because she had covid vaccination on Saturday- reassured not.

She had her 2nd cycle of Chemotherapy the next day, there wasn’t an issue with PICC line, the A&E doctor wasn’t doing it right with flushes etc – who knows 🙄. She tolerated this round better, she was not sick and didn’t hallucinate but was totally wiped out, and slept lots. Think she will be hearing the bleeps from machine in her sleep (attached to machine for over 48hrs) she was allowed home on the Friday, her consultant has reduced her pain relief and steroids- all good signs.

First top up went well, home same day just very tired after this one but she didn’t seem to pick up. We should have took this as a sign …..

The next Tuesday top up day was a hard day. I had my mammogram the week she was an inpatient and they called me back as they had seen a 14mm image that they wanted to look at more closely, my appointment clashed with her chemotherapy top up, so not only was she having chemo she was worrying about me. Lucky after an ultrasound and a different mammogram the doctor couldn’t see anything so gave me the all clear- yay. I returned to her, her consultant, sarcoma nurse and Mark were with her, she is anaemic and needs a blood transfusion as well as chemotherapy. So a quick visit turned into an 8 hour visit, they let both myself and Mark stay with her, we watched Harry Potter in the retreat room and played pool, this helped the time pass. Another young person was having chemotherapy in the retreat room as well, only her 2nd visit, she was being very sick, and looked scared- its just heartbreaking to see.

We were told if Emelia’s temperature stays ok she will be home after her blood transfusion. Lucky it was fine, so home we went. The next morning her temperature was high, so rang the hospital, bring her into to assessment ward, we will have a look at her. So at 8.30am we are taking her back again. We let her sarcoma nurse know and she rang ahead and explained I would need to stay with her. After tests (and a giggle pushing her to x-ray) it was decided she needed to stay in, so moved to another ward whilst waiting a bed on the teenage cancer ward. IV antibiotics and fluids given, they kept an eye on her over night, after being told she could be here 4 nights and then maybe 2 days, we were given the good news she can come home after 1 night, with antibiotics.

She isn’t great, very tired, fed up or should I say pissed off with it all, made harder possibly because, Tom has had to move out, so he can attend college and see mates as restrictions are lifted, he struggled with shielding, so moving out is safer for her. But must be hard for her to see him moving out having a life, starting something new and exciting. For me, its upsetting he went so quick, no build up to get used to it, I know its the right thing, they all need to fly the nest but …….

I just wish the rollercoaster would slowdown – I know it will not stop anytime soon, but a slowdown would be good, then we could raise our hands and enjoy our time together ❤

She has been home for 2 days now, its odd as at times it all seems so normal, a normal weekend in lockdown. But its not normal. She is scared, she is asking why her, she says she doesn’t feel brave, yet to me she is more than brave. I have told her its okay to be scared and not to feel brave, because we are here to be brave for her, that she’s not alone, she said but she is alone with her pain 😪 (no words!)

She has been home a week now, we went to City Hospital last Tuesday for her top up chemo, we were there 6 hours, mainly because they only make the chemo drugs up once you are there and also because her medication needed sorting, they were meant to be reviewed and we were running out of some, it took ages to sort. Luckily we were in the quiet room on the Teenage cancer ward. Unlike the chemo ward which was very busy and noisy when I went, so much better.

This week has had its ups and downs, some days almost normal. But her hair started to fall out, so she needed to take control, and shave her hair off, I am grateful that last year she decided to cut her long hair off and have shoulder length hair (she did donate it to the little princess Trust- who she could get a wig through now if she wanted) it was emotional as now she looks like she has cancer, coupled with the emptying of her uni accommodation makes it all seem real, we did cry together as its just so unfair, she should be going back to uni and enjoying all that involves, being with her friends, her uni accommodation was a safe, chilled place for her, she loved it there so its heart breaking that today we had to empty it…….

People keep asking me how I am, from friends to professionals and I don’t know i can’t answer that, I am going from day to day. I am busy, she has meds 4 times a day , so I am medicine lady and feeding her at least 3 meals and snacks a day. My specialty are milkshakes (Eskimo style – she was told NOT to eat McDonald’s milkshake as not good with low immune system- so of course crazed one, homemade best). It is getting harder to feed her as her mouth is so very sore, but we are succeeding and working with it, as its the only real pleasure she can have. For me its good I can help a little, I am also asked does it help that I have had cancer and chemo, it does a little, as can relate to losing hair and that life goes on for others, but her chemo is so much more intense, and she is only 21. Nothing prepares you for watching a 21yr old having to fight a very rare cancer.

I am sorry that I have avoided talking to people, answering messages mainly because I really don’t know how I am, or how we are, I do appreciate every message, offer of support, but some days I do just want to curl up and shut the world out, but can’t as I need to be strong for her, she worries about us as it is ….. I will answer your messages eventually ❤❤

Having cancer is bad, but watching your beautiful 21 year old baby girl start her own battle is horrendous!! She is such an amazing person and has always inspired me, she being her has given me permission to write my blog, about my experience of her fight, she has asked I be honest, I said be easier if I know she will not read it 🤔 she is worrying about us all, particularly her friends and immediate family. So me being honest about how I am may be hard as trying to be strong for her, although she knows me well, so probably already knows how I am feeling. What I write is how I remember it, how I view it all and from my point of view not hers.

This all started around Christmas- she started experiencing headaches that wouldn’t go away – we explained it away the stress, uni coursework, TCAs still don’t know what that stands for but online exams to you and me or change in diet (veggie due to Sir David Attenborough) but they continued and got worse, a few telephone calls with GP and finally New Years Eve she saw a GP – migraine meds given, this took the edge off them but never got rid. She then became concerned that she was taking too many (this can then make headaches worse – go figure) again spoke to GP a few times over the phone and another face to face, this time urgent 2 week referral to neurologist (don’t worry sure not cancer but 2 week as unable to do other referrals at the moment). So on the 3rd February we had a telephone consultation with a neurologist. By now she had double vision and a numb cheek and top right lip. He wasn’t concerned felt it could be due to over use of migraine meds and wanted to try different medications but felt a CT scan of the brain would be useful (if we had waited for this she still wouldn’t have had it as booked it for 26th Feb!!)

4th February her eye sight was worse, she was worried so rang GP, they said A&E get opthalmology to look at eye. Lucky I was able to stay with her ( we had thought about going to A&E sooner but hesitated, i had rung them and they said i was unlikely to be allowed to stay with her) 12 hours later, CT scan and MRI done, the ENT team talk tumour/mass there is lots of people rushing around, shining lights in her eyes, arguing with the ophthalmologist to come look at her, discussions with QMC Nottingham all a bit of a blur now, but was admitted there and then, I was told I couldn’t visit the ward and she maybe transferred to QMC via blue lights. Leaving her there was at this point the hardest thing ever, yet she was more worried about me! I got the call at 4am to say she was being transferred over to Nottingham neurology ward- no visiting ! Bloody covid !! Then someone on this ward tested positive to covid, so now she was deemed a covid risk – this meant tests paused and other consultants were reluctant to see her. She was moved to EENT (eye, ear, nose and throat) we were then allowed to visit- I would say that once we were told yes okay to visit i knew this was not good, no one had said cancer but we knew. She had a biopsy from up nose, more MRI scans and then last Thursday she was moved to City Hospital Nottingham to Hogarth ward to side room, oncology ward. We were told that it was cancer, and they were waiting for a bed down the corridor on the teenage cancer Trust ward. On Saturday she moved in there, so after 3 hospitals and 4 wards she is finally settled where she needs to be and we have a bed in a cupboard (harry potter style) so one of us is with her all the time, apparently guidelines are different for teenage cancer (which is up to 24 years old)

Her diagnosis is Rhabdomyosarcoma in the sinus (we joke she trumped me on this one, had to go and get herself a rare cancer, but not only a rare one, she has to have it in a rare place too!!) Normally this type of cancer starts in the bones – but no not her, she has it where they can’t operate. The plan is Chemo and Proton radiotherapy.

Her humour is still in tack, its awful seeing her in pain but she doesn’t want to be a nuisance!!! We as parents are taking it in turns to be there, the ward has said we can both visit so have spent a little time together with her, but also need a break to be fit enough to support her. It was the hardest thing ever leaving her last night, as she had just started chemo, but it was Mark’s turn. I want this for her, it should be me not her – life is fucked up and cruel, oddly when I had chemo etc I was pleased the world was still going on around me, now I hate it, I can’t bare Facebook or the news I want it all to stop 😪

Hi – so I wasn’t sure whether to carry on with my blogs, I feel quite exposed when I write them. But then I think if it helps one person to understand or to know they are not alone – to realise that sometimes having had that cancer diagnosis is like having a cloud over you, even on my most positive days even though I am sooo lucky. I think maybe thats why I hesitate, because there are so many people not so fortunate, so for me to moan seems wrong. But I guess everyone is going through something and its important to them, one person’s struggle isn’t more important than the next person’s, its just different.

This week I had my pre cancerous cells removed from my cervix which is a good and positive thing, the consultant feels that this should have solved the issue and expects next years smear to be fine.

Whilst there i explained about my bleeding, so she has taken a biopsy of my womb, unfortunately tamoxifen can lead to a thickening of the lining, which can mean a greater risk of womb cancer, especially if the thickening has abnormal cells,which she is checking. If all is okay, she has gaven me two choices of how to go forward.

She suggested the mirena coil being fitted again, its a controversial choice as it contains hormones – which is why it was removed in the first place. This will help with the bleeding but not the thickening.

The next choice is a minitouch endometrial ablation – this removes the lining of the womb, seems a bit extreme as we don’t know if it has thickened – so I will need a hysteroscopy a camera to check the womb, to see of the lining has thickened.

Before I decide I will wait the results of the biopsy – if clear which I am sure it will be, I think I will chat to my breast care nurse about the above options and also my tamoxifen options. I feel I could have these things but tamoxifen may still thicken my lining and would I still be back to square one in a few years 🤷‍♀️ oh decisions decisions

Back to my cloud and although its there, every appointment from doctors, dentist etc I have to repeat that I had cancer, that I am on tamoxifen, my children will have to also tell doctors etc that they now have a family history of cancer. Always there. But my cloud has a rainbow 🌈 too, my fabulous support network who should really be fed up by now of my daily struggles on tamoxifen, but they never show it, and I love them all the more for it. They don’t tell me to be positive or chin up, they tell me its ok not to be ok ❤

I have finally received my results from the colposcopy clinic.

It is good news I feel ☺. They have unfortunately found pre-cancerous cells, but I have also received an appointment to have them removed, and yearly smear test. So I am sure all will be good 👍 just something that needs dealing with.

I think this really shows the importance again in knowing your body, and always getting it checked out if you feel something isn’t right. You know your body better than anyone. Smears are not pleasant, going to the gyneacology department is not pleasant but if left, pre-cancerous cells could become cancerous, so more unpleasant. Do not let the doctor fob you off if you feel something isn’t right, go back and see a different one, my doctor was good but possibly because of my history – with breast cancer I needed to see a different doctor to get a referral.

Another positive from my visit is the samples they gave me to help with thin skin and dryness in the area – I have purchased some yesyesyes organic products and they haven’t solved it but they have made it so much better, I would recommend their products if anyone is on hormone treatment or going through menopause and need help with this issue.

It’s been over a year since my last post, why you may wonder or not that’s okay 😂……… the year has been okay, mainly positive been trying to live life to the full, going away and enjoying nature. Working and being mum. I found lock down okay, I felt lucky and safe, which I was blessed for. Although many trips were cancelled, I had my kids at home with me ☺️ Mark was off work, but I was able to carry on working from home.

Today was a difficult day, another appointment at the gyneacologist, due to tamoxifen they think – so more biopsies taken. I know its probably nothing however the GP said yes there’s something there, sure it’s nothing but we need to get it checked, the consultant said today sure it’s nothing to be concerned about but we will wait the results – you would think this would be enough to put me at ease – unfortunately when the GP and specialist said the same just over 4 years ago and it wasn’t okay, that haunts you, until I am told the results say it’s nothing to worry about, I will worry – natural I am sure, but it still makes me feel I am paranoid and cancer is the gift that keeps on give or is it tamoxifen that’s the gift that keeps on giving, the fatigue and emotions the other side effects that are personal 🤔. There is talk of 10 years on T not the 5 they first said – I need to take it 1 year at a time, I can do this.

I have started to change my life style, I am not eating meat, not for health reasons as such but because I have grown to love life, wild life and animals in general – I am going to start to walk more, I have slipped into a routine of not much exercise especially with lock down, this changes NOW – although today has been hard and I am in pain at this moment- moving on it’s given me the kick that I have needed

To all my friends and family that keep me going – listen to me moan, because I’ve decided to always be honest about how I am feeling – thank you and sorry if I go on, love to you all 💗💗

It’s now over 2 years since my last chemo, and I think I am almost side effect free…..my veins have stopped hurting unless I am a little dehydrated, my concentration isnt how it was, not really able to do more than 1 thing at once, and my short term memory can be an issue. Not sure that’s chemo or tamoxifen or start of menopause due to tamoxifen 🤔 might just be an age thing 😂 I think I am sometimes just quick to blame chemo or the dreaded T.

I went to see my surgeon yesterday to decided whether to have another operation on my false boobie – so more fat put in to alter shape and size….. on trying to weigh up the pros and cons of another operation my daughter said something that kind of surprised me, she said that I had 2 options :

1. You can stay as you are and be quite happy with it but continue to remain well and improving

Or

2. Possibly go through pain etc (be knocked back) and still be quite happy with it

Not her actually words, she said it so much better and she knows it’s my decision and I really wasn’t sure what I wanted to do. What struck me was that she had seen that I am improving and that I am generally really well – apart from a few niggles from T which I am dealing with . It just took her saying it for me to actually notice it too 😊 so the decision is – is my boob maybe looking bigger more important than the fact that I am well. After talking to my surgeon and him looking at his handiwork, he said he didnt feel that another operation would actually really improve the look of my boob, so he made the decision for me yippee 😂 I do feel it’s the right decision though, so he signed me off (not before taking some more photos of his masterpiece) no more appointments at the breast institute unless it’s my yearly mammogram – I could dance and sing (I wont we have had enough rain lately)

My hair is now a really good length, but its different it’s even more curly and thicker, some days I like it and some days I wish it was how it was, but I have my hair compliments back 😂 (not sure are ever a 100% happy with our hair 🤔)

I can’t believe its 2 years since my last chemo – time moves on, life moves on but its definitely changed me, i remember thinking when I was first diagnosed “well its only a year out my life with treatment – we can do this” in reality it’s not a year, after 2 years it’s still there but I am moving forward and I am happy and grateful I survived so many don’t x

It’s over 2 years since I had my operation – yes 2 years wow that’s gone really quickly – plus actually getting used to my new boobs, especially since my last little op. Oh yes and my hair is back and has more curls 😊

On the whole I am doing well, the tamoxifen is the thing I struggle with, it’s odd because one minute i can think i am coping with side effects ok, and then wham they hit me so hard, the being so very very sore, the cramps as if my ovaries are fighting with themselves, my bowels playing up, thrush and the leg and feet cramps – this week has been really hard, my emotions have been high. It started with the GP not allowing me my repeat prescription of cream that contains a small amount of oestrogen – oh and to be told no appointments till May!!!! Open surgery it had to be, I never used to worry about these things but I get stressed quite easily now (something I have to learn to understand and manage) the smallest thing can throw me, open surgery and getting to work at a reasonable time is one of them!

The doctor said she was happy to carry on prescribing but some others in the practice may worry about the oestrogen…….she gave me 1 tube, and said I need to get a letter from the breast institute agreeing I can use it, then I worry what if, what if they say cant use it or still GP not happy. I cant explain how sore I get down there at that time of the month, imagine if i had no cream 🤔 (I am sure it will be ok with breast institute as it was my BCN who told me to use it). The doctor also said I can use over the counter creams at the same time, so stocked up 😂 . I will say the doctor was good she said that after surviving cancer to have the treatment affect me seems so unfair, and we need to think about quality over quantity. So I am to go back if creams dont help.

She gave me 2 thrush tablets to take over 2 days, so I took one that night – I wake up to a red blotchy itchy face, now what – a reaction to tablets, does this mean I can not take thrush tablets ??? I how i cried (silly but it tipped me over the edge) I took the next one that night – thankfully I didn’t have the same reaction- odd.

And to top it off – I have the worse case of that time of the month ever!! And I feel rough.

Still its Easter – a symbol of new beginnings, fingers crossed doctors plan works if not a wonderful amazing lady has told me of an alternative to tamoxifen which seems to be working for her, she told me it’s about self care and push for it to be sorted – I will do this – time to get me sorted 😊 now the kids are settled and know what they are doing from September- they both have exciting times ahead and I want to feel good so I can enjoy with them x

A Note to Our Loved Ones From a Woman With Breast Cancer

Yes, I have had breast cancer. And I fought it. I probably had surgery. I might have had radiation. I might have had chemo. I might have lost my hair. I might have looked differently. I might have acted differently. Thank you for supporting me through that season of active treatment.

But now what? I look “normal” to you. I “seem” like I have good energy. I am acting pretty close to the way I used to, or so it seems. I may be back to work or back to the regular routine I had with the kids before cancer hit.

You say, “I’m so glad you got through it!” “I’m so glad that’s over!” “I’m so glad you’re DONE with that!”

But guess what? I have a secret to share with you.

It’s not over. It will never be over. EVER. Because I now had a new label. I am a cancer patient. Forevermore.

If I just ended active treatment and look “great,” my reality is that I do NOT have the energy I did before The Beast was diagnosed. So please be gentle with me. Even if I look the way I used to, know that I have just been through a terrible, costly war that had many, many horrible battles. I probably am suffering from some form of PTSD. Really. I may need counseling or anti-depressants to get me through re-entry into “normal” life and to deal with the expectations that others have of me. Because I’m changed.

Maybe a few months have passed since my active treatment ended. I don’t look like I had cancer now. And I sure don’t act like it. I’m doing my best to resume life as I used to know it. But the reality is life will never be the same again.

Some of us are lucky enough to be able to take a pill that will help keep The Beast away. So every day, as we swallow that pill, we say a silent prayer to ask God to use it to kill whatever rogue cells might be floating around our bodies.

And some of us have a different type of The Beast. It’s aggressive. And we hope that one day the medical community will come up with other ways to fight it. We’ve done all the treatment we possibly can. So now we wait. We wait because there’s a higher probability that this type of cancer will return. And there’s nothing we can do about it now. Except wait.

Now that we have been diagnosed with cancer, all of us have different odds of The Beast returning. Some odds are in our favor, some not. I am a cancer patient. Forevermore.

My oncologist will order tests every three months for a while, then every six months, then every year, then maybe even every few years. But if I want to continue to fight The Beast, I will ALWAYS have to go back for more tests. More doctors’ visits. More scans. More needles. More paper gowns. More pokes. More prodding. More questions.

When I fill out forms in the doctor’s office, I no longer have the ability to check “NO” to all the pre-existing conditions. I now have to check the boxes that say I have had cancer. That I have had surgery. That I have had radiation. That I have had chemo. That I have implants.

My children will now have to check the boxes that say that their mother had cancer. Their odds of getting cancer have now increased, and I would do anything to get cancer again if my children didn’t have to.

I will always have that little thing in the back of my mind that whispers, “What if it comes back?” I will always have a certain level of anxiety with every blood draw, x-ray, MRI, CT scan, mammo, PET scan and other test that my oncologist orders. FOREVERMORE.

Unless you have had cancer, you can’t possibly know this. And you certainly can’t understand it.

But it’s real to your loved one. Even if she doesn’t say it out loud, the fear is there on some level. No, it’s not usually all-consuming. It’s just there. In the background of my mind. Cancer.

For those of us who have a relationship with God, we work hard to give that fear back to Him, asking Him to transform it into increased faith. But we’re human. It’s almost impossible to escape the fear in the still of the night, when no one else is awake, when the only sounds around us are the soft breathing of our loved ones.

So we will continue to fight. Usually without words being said. We will do our very best to live life to the fullest, because one of the things we’ve learned the hard way is that life is fleeting. Precious. Never guaranteed. We have lost friends to The Beast. We have come to understand how thin the veil is between life and death. We have known at least one friend who was here one moment and gone the next. We’re not taking life for granted anymore. And we are grabbing onto it with both hands.

And we will continue to fight to be sure The Beast is kept away.

But please don’t forget our secret. And please help us through it.

I am a cancer patient. Forevermore.

💜 Jan Owen James 💜