Category:

My womb cancer story by KU

22/5/2022

I am 63 years old and was diagnosed with endometrial cancer in March 2014. There followed months of surgery and treatment.
I had a total hysterectomy at the end of April 2014 and started chemotherapy of two different drugs in June of that year; one drug took 5 hours to administer and one took one hour.
So for six hours every three weeks I underwent this treatment. At first I didn't tell my three children what my diagnosis was. I don't know why, I don't think I wanted to worry them but when it was evident that I was going to lose my hair I had to tell them.
It was a very emotional time and I hid a lot from them. I live in Ross-On-Wye and have done for 18 years. I worked full time as a care assistant so it was easy to hide a lot of the not so nice stuff.
My parter worked away from home so most of the time I was on my own. I had my treatment on a Monday; travelled to Wales which is where I'm originally from and where my family still are.
On a Tuesday and for the following three weeks I squirrelled myself away resting and recovering from the effects of treatment. When I went for my second treatment my oncologist informed me that on a routine ct scan there was a mass in my stomach which was causing them some concern.
My world was falling to pieces. My chemo was suspended and an endoscopy and other tests were carried out through the following week. The mass appeared to be a slow growing tumour, which had probably been there some time and it was decided to continue with my treatment to see what happened.
I had another 5 chemotherapy treatments, 29 radiotherapy and 2 brachytherapy treatments.
In November 2015 I had a total gastrectomy to remove the tumour which had by this time spread outside my stomach.
It's been a long road there have been ups and a lot of downs but I'm still here. Its still not far from my thoughts ever!
I can still enjoy my wonderful children, 12 grandchildren and my great grandaughter,
I'm not very good at putting things down into words and sorry if it's just rubbish but hope this gives someone somewhere just a little hope.

1 Comment

The crushing womb cancer diagnosis from a family perspective by DH

15/5/2022

1 Comment

During lockdown and the uncertainty of the future, we tried our best to meet at distance seperated from loved ones and trying to keep as much normality as possible, My daughter celebrated her 17th birthday on the 23rd June 2020 then on the 24th of June my parents unexpectedly turned up at my house, socially distanced with the devastating news that there was a 95% chance that mam had womb cancer,
There had been some post menopausal bleeding at 74 years of age. I had absolutely no idea what womb cancer was! I thought it was related to cervical and ovarian cancer but no other information. I was on furlough, going through redundancy and spent the next four weeks either crying or researching the statistics on the internet to arm myself with anything to fight.
The oncologist called to discuss and it was confirmed that it was aggressive Stage 1B carcinoma. The cancer rollercoaster had begun, endless waiting, date for hysterectomy was August and mam was put on Provera as the cancer was estrogen sensitive to try and keep the cancer at bay. The hysterectomy went well but rather than just having radiotherapy they also said that she would need chemotherapy.

Mam was devastated she would lose her hair, so we went shopping for wigs and when her hair did start to come out she embraced it like a trooper. 6 weeks followed of chemotherapy carboplatin and paclitaxel combination followed by five weeks of 25 radiotherapy treatments. The histology report came back in January 2021 and the wonderful news that there was no trace. We could breath for a bit but it was always there looming in the back of your mind. Any little twinges would cause concern. So we carried on trying to make the most of the days.
Mams hair started growing back curly with lovely chemo curls and she really liked the style. Then October 2021 mam started to have pains in her stomach, she was diagnosed with some sort of stomach flu, given tablets and also a H Pylori test. After a few weeks of suffering with constant pain and sickness I took her to A&E to find out what was happening. Two days went by fighting for a CT scan to then finally be called into a room to be told that the cancer had returned, just utterly devastated that we had to go through it all again!

The nurses and doctors couldn’t believe she was poorly as she looked so well they said but the mood changed when the scan results had come through. It showed ascites around the pelvic area and some spots which we thought were on the liver but unclear. The walk through the hospital corridor was a long one just utter shock and disbelief. The oncologist visit was soon after and it was confirmed that it was recurrence of the lining of the stomach and could be treated not cured. Bizarrely the H Pylori test also came back positive and mam was admitted to hospital on the evening of her 75th Birthday so that they could treat the pains she was experiencing.
I had just recently started a new job and had to take time away to put the brakes on as it was all too much to comprehend and started suffering with extreme anxiety, we weren’t allowed to visit the hospital because of covid restrictions which was extremely difficult. However during this time of reflection, I researched and searched for ways to try and reverse the cancer; contacting organisations later for clinical trials, finding out how mams estrogen sensitive cancer could be managed. I contacted the oncologist and armed with all this knowledge wouldn’t take no for an answer.
Meanwhile mam was having palliative care, district nurses who were amazing coming to their home every day when she came out of hospital to change the syringe driver. A CT scan was called just before her visit to the oncologist on the 1st April this year, I couldn’t go as I had covid and after another round of chemotherapy, carboplatin was cancelled due to low magnesium levels, along with a blood transfusion and magnesium infusion we were concerned about the results.
But here’s the thing the news was really good, the bubbles of cancer that were showing in the lining of the stomach had almost disappeared, there was a slight spot on the kidneys but couldn’t attribute it to cancer and mam was put on hormone therapy Provera (which we fought for) They are now putting her forward for funding for a new drug.

The long term effects of all of this emotionally for mam and the family have been horrendous, the medication has been changed to tablet form to give a better quality of life but the concoction of medication has resulted in agitation and anxiety. You can’t help but feel that you should be delighted with the results but part of you knows that if you let your guard down you may not have the strength to fight on another day.
But fight on we will and will not leave anyone else suffer the turmoil that is caused by cancer so will continue to raise awareness and shout it from the rooftops.

1 Comment

My experience of endometrial cancer and grief by PK

8/5/2022

1 Comment

I was diagnosed with endometrial cancer in February 2022. Symptoms started in August 2021, which I was quick to respond to but had to wait several months for an ultrasound. The scan found my endometrium to be far thicker than it should be, torpedoing me into a bewildering and frightening few months filled with levels of uncertainty that my system struggled to cope with. I found myself moving between states of high anxiety and terror; anger and rage; guilt and shame; sadness and despair; loneliness and isolation and moments of feeling very numb and cut off.
From the moment ‘cancer’ was mentioned everything changed. I have now had my hysterectomy and brachytherapy and my mind and my body are more able to start to look towards healing and recovery. My physical healing is moving at a faster pace than my emotional healing and I know I need to reflect on the impact cancer has had on me and my life over the past few months.
I started taking some time to write down what I had lost and what had changed. At the last count I had made a note of 30 things that had changed in myself or in my life, as a result of cancer, since February.
I wanted to share a few of them because I don’t think I am on my own in feeling like this.

I lost my health. I had never really been unwell before or spent any time in hospital. Now I had a body that had stopped working for me and had started working against me.
I lost trust in my body as something that was safe. Part of my own body, if left unchecked, could kill me. I lost a sense of control of my own body. Not only was part of it growing something that could potentially kill me but other people were now making decisions about what happened to my body. Somebody was telling me that they were going to remove my womb, my ovaries, my cervix. These were ‘my’ things. I did not want them to go but I lost my ability to have a choice because there was no choice. The cancer had to be removed.
I lost my peace of mind and I became hypervigilant about every little pain and twinge in my body.
I lost my sense of privacy and dignity. My diagnosis and my body felt like it was in the public domain: nurses, consultants, my GP, my family, friends, my employer all knew about intimate parts of my body and what was happening to them. Surgery and invasive procedures became the norm and I lost my capacity to enforce the rules and boundaries of my own body and to protect myself.
I lost my sense of safety not only in my belief that my body was a safe space that looked after me and was healthy and well but also my sense of safety in the world where I was protected from harm, because I had not been protected from harm; I had cancer.
I lost my motivation, my sense of freedom, being able to be excited about things, looking forward to the future because I did not know if I would have one. If I did, it was going to be different than the one I thought it was going to be before cancer and I could not physically feel excited because fear had hijacked it.
I lost my sense of financial security and had to stop work for a while, losing my sense of professional identity.
I lost what was left of my remaining fertility and my pre-menopausal body and I lost the experience of any gradual transition to menopause. One day I was not in menopause and the next day I was.
I lost my sense of feeling like an adult or an expert. Now, other people were telling me what was going to happen to me next. I felt needy and vulnerable and wanting to be taken care of. I feel like I have lost some of my confidence. Life was a series of appointments and hospital visits. I felt like a novice in a completely new world of cancer where I didn’t know anything.
I lost my sense of femininity, desirability and attractiveness and I lost a sense of innocence about my own mortality.
I lost the ‘me’ I had been three months ago without warning or preparation. I think we can be quick to dismiss or make light of these losses. Some are only temporary, others more permanent. But, for me each one of them deserves some of my attention and some of my time as I grieve what cancer has taken from me so that I can begin to embrace what comes next and start living again.

1 Comment

My womb cancer story by TB

20/2/2022

2 Comments

Here is another personal story of a womb cancer diagnosis.

In August 2020, in the middle of a pandemic and lockdown I was diagnosed with endometrial cancer, the news that no-one ever wants to hear, so I thought it was now time to continue to raise awareness of the condition and diagnosis.

I had Cancer!  With no symptoms until July and it was a total shock. I had a post menopausal bleed. I rang the Doctors surgery and got an appointment with a nurse practitioner. Had an internal but nothing was to be seen. I was immediately referred on the two week referral system.

Then the appointment arrived and I started a series of tests, scans and biopsies, I was virtually living in the hospital.  Relatively quickly I was referred to a surgeon, I’ve been fortunate to have had my health all my life til now and it was devastating. No one ever really talks about womb cancer (endometrial cancer, or uterine cancer) it should be easier to remove as it’s an enclosed space. But for me as I later found it had gone a step further.

I has a lesion on my bowel with some lymph node activity and I ended up in October 2020 in surgery facing two major ops - a full hysterectomy (incl. womb ovaries tubes and cervix) but also a section of colon was to be removed (where the lesion was) and I had a reversible stoma procedure too. I was stage 4b grade 3!

This has been life changing for me. I was facing chemo and radiotherapy but my first visit to my Oncologist was an eye opener. He said we are not going down that route yet!
We were a bit gobsmacked! I was to have hormone treatment as my cancer was driven by the excess of estrogen in my body. This was the cause of my cancer!
It was agreed to start progesterone medication to counter the estrogen and stop its production.

I returned in December following further blood tests to see where I was with this treatment. That was when things changed once again! That hormone treatment was not working and I had blood clots in my lung! The Oncologist was now recommending a change to another hormone.  This one could give me osteoporosis more great news …. Not!

That was continued until Feb/March 2021 when it too was not working.  Chemotherapy was the next step and was started in March 2021.

That was an eye opener in many ways. Chemo is nasty stuff, for my first infusion I was in the unit over 7 hours!
I was totally unprepared for the repercussions. Of course you’re told what may happen and to be totally honest, and with hindsight, I did get off lightly in the scheme of things.

The worst was the immediate constipation. TMI to follow here ……….
Having a stoma means your body waste does not exit your body via the normal route, but via a surgical procedure to an exit from your stomach. You’re fitted with stoma bags to collect your waste. You have no control of when or how much is produced.

The constipation was bad, I felt uncomfortable and sought help from the oncology helpline. It was suggested I took movicol. In my humble opinion it is the product of the devil!
I took a sachet - nothing. I took a second sachet - still nothing, so on the  advice I took the third sachet and settled down to sleep. Well, that was the start of what could have put me in A & E !!

At approx 3am I was woken by the fact that the medication had worked, but as a bag only has limited capacity I had sprung a leak! My sh*t was everywhere! On me, the bed, the bedding. As I tried to move more appeared. I called for my Husband. He came and saw my distress and of course the mess! I removed the bag and replaced it whilst  he laid towels from my side of the bed to the bathroom and the shower. I was weak from the fluid loss but managed to clean myself whilst sobbing my apologies. He, meanwhile stripped the bed and remade it. I replaced my nightwear and fell into bed. 1 hour later at 4am the poonami again arrived and provided me with a replay!

So we went into repeat mode. It was the worst experience ever, I since found out that “normal” people can take up to 8 sachets to get things moving. It was decided I was possibly allergic.

After later discussions with my Oncologist I found a way of minimising this side effect with meds, I always took it the evening before Chemo and on the morning of my Chemo and over the 6 rounds I had it under control.

I continued to have scans and blood tests and things were looking fairly positive. My CA 125 (tumour indicator) continued to drop from 103 to 12 and stayed there. So it was decided I should have 2 further rounds of Chemo taking me to 8 in total, and would finish in September 2021.

To date - February 2022 I am 24 weeks post chemo, bloods show a tiny rise in by CA 125 from 12 to 16 but I’m told is not a cause for concern. A scan should have followed mid December with a  follow up appointment 17th January 2022. This didn’t happen thanks to covid pressures on the NHS. I had my bloods and a CT scan at the end of January with a phone consultation with my oncologist for the results, it should have been face to face but my consultant’s son had covid and he had to isolate!

It was not the best news ……. Again!
There was some lymph growth, an enlarging, and he was now recommending immunotherapy. I’m due to see my consultant on the 23rd February for the next step of the treatment plan. I’m feeling good and positive, I’m very determined and think my positivity and the support received from family and close friends is some of the best medicine possible. I have to add I have nothing but praise and gratitude for my level of care during such a trying time.

To all the ladies just diagnosed, or in treatment, do everything you can to be as positive as possible. I talk to this “thing” (definitely the politest way I’ve referred to it) every night, weird? perhaps, but it helps me.

And finally, to quote the Greatest Showman track “I am brave, I am bruised, I am who I’m meant to be, this is me! ❤️

If you would be willing to share your womb cancer journey then please get in touch using the contact form on the website.

Every time a story is shared, it helps to raise much needed awareness.
Thank you.
Kaz :-)

2 Comments

My womb cancer story - by Sam Rose

8/11/2020

0 Comments

My womb cancer story starts with an abscess, and if it wasn’t for that abscess and a particularly diligent gynaecologist, I might not be here to tell you about it.

In 2017 I had a recurring abscess down below, which I discovered while in the toilet at work one day. When I first felt it as I was wiping, my stomach flipped. I’d already had cancer once – bowel cancer in 2010 at the age of 22. I also have a genetic condition called Lynch Syndrome, which makes people more likely to get certain types of cancer. So naturally, when I felt the little bump that day, the C word was the first thing that came into my head.

My doctor confirmed it was an abscess. Nothing serious then, but it stuck around for months. Sometimes it would simply come and go without hurting or getting very big at all, but once it got so big I could barely sit down in comfort. After several recurrences and a bit of going around in circles with referrals and feeling lost in the medical system, I was sent for an MRI.

The MRI didn’t pick up anything around the area of my abscess, but it did pick up something in my womb that needed to be checked out, so I was referred to a gynaecologist. Filling defects, the letter said. I had no idea what that meant, and searching on Google brought up nothing of any use. But the abscess was still a problem too, and I wondered if the two things were connected somehow. After all, that was the reason why I had been sent for an MRI.

The gynaecologist gave me an exam which seemed fine, and he looked at my MRI results. He said he didn’t think it was anything to worry about, but I could get a hysteroscopy just to be sure. I said no because I didn’t want to put myself through anything else if it wasn’t necessary, and I went away happy.

However, a few weeks later I received a letter in which the doctor said that he had changed his mind. I had told him about my Lynch syndrome during the appointment, and he didn’t really know anything about it – which was surprising as womb and ovarian cancer are risks with Lynch syndrome. But in the letter, he said that he had been researching the condition and he thought I should get a proper exam just to be on the safe side, so he was referring me to someone else for a hysteroscopy. I had known about the risk of womb cancer, but like an idiot I hadn’t mentioned it and I hadn’t said yes to the hysteroscopy. I was scared of what it might find, and it was much easier to assume that everything was fine. Thank goodness for that gynaecologist, because if I was left to my own devices I could well be dead.

I went for the hysteroscopy and awaited the results. I told them that I was going on holiday soon, so if I needed a follow-up appointment it would have to wait until I got back. Meanwhile, I had also been awaiting my annual post-bowel-cancer gastroscopy appointment. It turned out that the gastroscopy revealed a polyp which was sent for biopsy. It was flat and to be treated as urgent.

Despite telling the receptionist at the hysteroscopy appointment that I would be away for the first two weeks of May, when I arrived home there was an appointment letter waiting for me – and the appointment was for that very day. I got on the phone to explain that I’d only just arrived home and rearranged the appointment for the following Friday. I was worried but I relaxed a little knowing that whatever it was surely wasn’t that urgent, because apparently it could wait seven days.

But that wasn’t the only nasty surprise coming my way. My bowel cancer consultant wanted to see me, and not at his usual outpatient clinic – I had to go and find him on a ward. This was not a good sign. They had found some cancerous cells in the duodenum, which is a small part of the small intestine. They were going to refer me to a hospital in Leicester, where they had specialists who dealt with the small bowel. Surprisingly, I left the hospital in quite good spirits. We knew what was going on. My consultant had made me feel quite at ease and like whatever it was would get sorted out, and everything was going to be okay.

The next day was my appointment with a different gynaecological consultant to get the results of my hysteroscopy. I wasn’t expecting it to be anything too bad, which is why my partner wasn’t there. The last thing I expected to hear was that the lining of my womb was pre-cancerous, with suspicion of early stage cancer.

I could hardly believe it. First the news about my duodenum, and now this? Two diagnoses in as many days. I was going to have another hysteroscopy, this time under general anaesthetic, and an MRI to get more information. She would also refer me and my partner to a fertility specialist in London to talk about options, but I may need to have a hysterectomy. If the cancer was early enough or if it was pre-cancer, we may be able to have a baby or freeze some eggs before any treatment or surgery happened. It was a lot to take in.

The MRI scan and hysteroscopy results came back and soon I had an appointment to see my gynaecologist again. I was worried that it had come back so quickly – was it definitely cancer and not just pre-cancer? Was it worse than early stage? Late stage?

It was indeed cancer and not just pre-cancer – stage 1a. We were told that we could freeze some eggs for later use with a surrogate, and when that had been done I could have my womb and ovaries removed. Ovarian cancer is a risk with Lynch syndrome just like womb cancer is, and one isn’t much use without the other, so there was little point in keeping them. Having my ovaries removed would mean going into early menopause, but that sounded like something I could deal with. I had already thought about this happening. When I saw a genetic counsellor about my Lynch Syndrome back in 2011, we talked about how I should have a hysterectomy by the age of around 35 anyway as a preventative measure, because hopefully I would have had children by then, and that’s the age at which the risk of womb cancer increases. So we already had a timer for when we needed to have children by. We just didn’t expect it to be cut short by five years. But once again, I was feeling fairly optimistic when we left. In fact, I think the gynaecologist and the key worker at the appointment were surprised at my attitude. I said it was really the best possible news I could have gotten that day, which wasn’t completely true, I realised later – it being only pre-cancerous would have been better than early stage, but the outcome might have been the same either way because pre-cancerous cells couldn’t just be left in there. I had been thinking about how bad it could have been – if it was a later stage cancer - and I was relieved when it was slightly better news than the worst thing that my brain could conjure up.

What the fertility specialist told us came as a bit of a surprise. We thought we were there to discuss fertility options – mainly, freezing my eggs for future use with a surrogate. To get this procedure underway I would first need to take medication to make me fertile, which would happen a couple of weeks before egg collection. But he explained that stimulating the eggs also results in stimulation of the lining of the womb. In other words, it would cause the lining of the womb to grow, and this might also make the cancer grow faster. We could still do it, but it was up to me to decide if I wanted to take the risk. I didn’t. Which was good in a way because as he said, when a patient doesn’t want to take any risks it makes the whole decision process easier for everyone, and they can just do whatever is best for the patient. He also presented us with another option – an alternative to surgery. This would be in the form of medication that changes the hormones in the body, and it can work when the cancer has been caused by a hormonal imbalance. But as mine was caused by Lynch syndrome, there wasn’t any evidence as to whether or not it would work for me. And this treatment
would take a year, so at the end of it we’d be a year on and if it hadn’t worked, the cancer might have spread. So that was a risk, too. And leaving the ovaries would put me at risk of ovarian cancer from Lynch syndrome, so we discussed removing them at the same time as removing the womb. My partner and I agreed we didn’t want to take any unnecessary risks. So no risks for us. And no biological children for us. Even if we did opt for IVF, the chances of it working would have been extremely low.

I figured that the concept of not having my own children was something I would deal with later. I felt guilty that I couldn’t give my partner children because I knew he wanted them – probably more than I did. I had never been desperate to be a mother. I always thought that if it happened, then that would be great and I was sure I’d be very excited. But if it didn’t happen, it wouldn’t be the end of the world for me. I wasn’t ready to process it all, anyway, and after already experiencing bowel surgery and the emotional trauma that came long after, I knew that I probably wouldn’t feel the true upset of the situation until much later.

We were looking at two separate operations – the hysterectomy first as it was smaller, and then this second operation once I had recovered from that. The operation for my duodenal cancer was called a Whipple procedure, and it was a very big operation.

Compared to my bowel operation, the hysterectomy wasn’t too bad. My family came to see me every day – though I felt bad that they had travelled so far to see me and I could barely stay awake to talk to them, especially later in the evening. My catheter was taken out on the second day of my stay, which surprised and worried me. It meant I had to get up and go to the toilet now, and that I had to make an effort to walk around and get better. Plus, once we were up and about we were expected to go to the kitchen and sort out our own breakfast. We had toast, cereal, fruit and yoghurt to choose from. I would have much rather had breakfast brought to me at my bed. It was a good thing really, though, because walking around helps to get your bowels working again, and going to the toilet was something of a pre-requisite to leaving the hospital. I had to leave a urine sample in the bathroom to show that I was peeing enough and that I didn’t have a water infection, and I had to have a bowel movement before they let me go. In the small four-bed ward I was in, each of us celebrated when we managed to do each of these things – ticking off requirements that took us closer to going home. And I was certainly keen to get home. Once again I had the problem of finding it difficult to lie on my side, but I found that I could sort of prop myself up with the help of a pillow placed behind my back. I was looking forward to the comfort of my own bed.

Things weren’t easy at home. I had been throwing up in the hospital and my bowel was trying to get over the shock of being moved around. For the first couple of days it was like I’d had my colostomy reversal all over again. I had bad wind pain and acid reflux, and couldn’t face eating very much. My belly hurt and I was too tired to do anything but sit and watch TV. Even picking up my phone to reply to my friends’ messages felt like too much effort. Although the first few weeks were hard, I made progress every day.

My gynae consultant confirmed that I didn’t need any further treatment. I was advised not to go on HRT because of the cancer risk associated with it, so I’ve been lucky that I haven’t experienced much in terms of menopausal symptoms. Two months later, the Whipple surgery for my duodenal cancer took place. It was much harder to recover from but was ultimately a success.

I was very lucky that the first gynae consultant I saw had changed his mind about sending me for a hysteroscopy. I should have said yes to it myself because I knew what the risks were with Lynch syndrome, but I was so scared of what they might find. If I hadn’t had the abscess, I wouldn’t have been sent for an MRI, and I wouldn’t have been referred to that gynaecologist because of what the MRI picked up. And if he hadn’t then sent me for a hysteroscopy, I wouldn’t have had my cancer diagnosis and I might not be here now. It’s just amazing how everything lined up to get me on the right track – even if at the time it felt like a terrible track to be on.

It hasn’t been easy living with the knowledge that we’ll never be able to have biological children. Not long after my hysterectomy a co-worker announced her pregnancy and I remember sitting in the office at lunchtime hearing her talking about babies and pregnancy for what felt like ages. I ended up walking out of the office, down the street and towards the stream, where I sat under a tree and cried. It was too hard to hear about her baby plans and experiences. While I was sat there, I got a call from the MRI department telling me I had to go for another scan because they had forgotten to do part of it when I was there a week or two before. It really highlighted the disparity between our experiences.

It’s just over two years since I had my hysterectomy and Whipple procedure. I’ve been going to checkups regularly (though not quite so regularly during the pandemic) and 7th November 2020 will mark my two year cancerversary. So far, so good. I hope reading my story will help anyone who is facing womb cancer or a hysterectomy, and my Twitter DMs are always open – message me at @writersamr if you’d like to chat.
This blog post was adapted from my currently unpublished memoir, so if you found it interesting and think I should publish my entire story, please do let me know! if you like, you can read more of my musings at writersam.co.uk.

0 Comments

My womb cancer story by R.K

26/9/2020

1 Comment

I wrote my first guest blog post for WCSUK just over a year ago. At the time I was coming to the end of my chemo treatments and about to start radiotherapy. Now, a year later, my treatments have all finished and there have been no signs of the disease since October 2019.
I first went to my GP in November 2018 following changes to my periods. To be honest, there had been gradual changes for a long time before I went to see her. But I had dismissed them, as they were such minor changes, and put them down to getting older. Had I known that I should get any changes to my periods checked out, I would have known to see my doctor before the cancer had had the chance to progress to stage 3c (spread to nearby lymph nodes). This is why it is important to spread awareness so women will know to seek help sooner.

I got my cancer diagnosis in March 2019 and because of its advanced stage; I needed a radical hysterectomy, six rounds of chemotherapy, 25 radiotherapy sessions, and to finish it all of, 2 internal radiotherapy treatments (brachytherapy).

How people react to their treatments varies from person to person. It scared me to start chemo but chemo was kind to me. Knowing all the potential side effects, I got off lightly. The first 4-5 days after each session were always the worst, but then I could have a couple of weeks feeling almost normal - my treatments were three weeks apart. In those two weeks, I often felt so well that had it not been for the hair loss, I would have wondered whether the drugs were doing anything at all.

But they worked as a CT scan taken half way during the six courses of chemo showed. As did the scan taken before the start of radiotherapy. Getting these positive scan results was a definite psychological boost. It was easier to enter five weeks of daily radiotherapy knowing my body was beating the cancer.
Especially as radiotherapy hit me a lot harder than chemo. Before my own diagnosis, I hadn’t even know that oncologists use radiotherapy to treat cancer. Now I found out that the list of potential side effects was as long as those for chemo. Talk about a steep learning curve!

The side effect that hit me the worst was fatigue. That, combined with chemo brain, meant I spent most days in a haze, sleeping and resting. And it took a long while to recover from that after the treatments finished. But it is possible to recover and now, I am almost back to normal energy levels.

Radiotherapy to the pelvic area can also cause many other complications. For example, problems with bowels, urinating and it can make the vaginal passage shorter and narrower, making sex more painful. In fact, my doctor instructed me to either have regular intercourse or use a plastic tube and lubricants the hospital supplied me with, to combat the effect on the vaginal passage.
They also gave me pills in case of diarrhoea. Before they begin radiotherapy treatments, the nurses do a planning scan to minimise effects on the bowels and kidneys. In my case they did an amazing job as apart from a few near misses, my bowels were mostly fine. For example, there was a time when I had to get off the bus mid-journey and rush into the nearest pub to avoid an embarrassing accident. Let’s just say I made it there just in time.

The trouble with the side effects is that some can appear a long time after the treatments have finished. Some can even appear a few years later. But I am keeping my fingers crossed that they stay away.
I know I have been extremely lucky with both short- and long-term side effects. I am left with joint pain in my knees, elbows and fingers and a very stiff pelvic area. But I have found that exercise helps with the joint pain, and stretching is slowly helping with the stiffness. But it is nothing that affects my day-to-day life. I am also lucky to be alive as the odds were not on my side.

The odds for successful treatment of womb cancer when diagnosed at stage 1 are 90-95% depending on the source. Therefore the work of organisations such as WCSUK is so crucial, and why I want to do my bit through sharing my story on sites such as WCSUK. I am also doing a charity bike ride across Europe with my partner. It is vital that more women know when to see their doctor as early diagnosis saves lives.

You can find out more about the bike ride on my blog Cycling for Cancer .

1 Comment

Everything you’ve ever wanted is on the other side of brave by Casey-Lee Jonathan

19/9/2020

0 Comments

‘’Casey did you come alone?’’ The shock of me sitting opposite her by myself was written all over the doctors face.
I was 27 and had had a biopsy the previous week due to an abnormally thick uterine lining detected during two internal scans. Part of me knew what was coming but when she explained the results had come back and she was sorry but I had womb cancer and PCOS I had an overwhelming feeling of suffocation.

As her receptionist had failed to tell me I was to bring a close friend or family member I had to take in the worst news of my life alone in the doctors office and all I could think was ‘’how the hell am I supposed to tell my loved ones??’’

My journey started almost 2 years prior when after years of hit and miss periods and a year of crippling pains I finally braved it and ventured to the doctors for a check up. This was one of many failures from the doctors that I was to endure up until my eventual diagnosis!
I explained my symptoms to the male doctor who rolled his eyes and told me to lay on the table whilst he felt my stomach. A matter of seconds later he returned to his seat informing me it was just IBS and to buy something from the chemist. Despite my confusion & my explanations regarding my periods I was ushered out of the door & left to request the IBS medication he had suggested.

Of course this didn’t work and after another couple of months of issues I returned to see another doctor. Luckily she took my complaints a lot more seriously and requested a smear test as I’d stupidly missed my initial offering.

My second problem came when calling the doctors surgery to enquire about the results and the receptionist telling me they had come back abnormal and to speak to a doctor urgently. Panic & tears set in (the first of many along my journey) and I awaited the doctors call back whilst trying to keep myself busy to fight the nausea that had set in. Fortunately the doctor explained the receptionist had been mistaken and my smear test results had come back clear so the next step was to have an abdominal scan & an internal scan to check for PCOS or endometriosis.

Two scans later and I was sent for a biopsy months later in October 2019. The following week when I received my results my mum and best friend had been texting me telling me to let them know what my results were and wishing me well. Sitting in my car in floods of tears, hyperventilating & shaking like a leaf I responded to my mums text explaining I didn’t even know what to say to her & quickly replied to my best friend saying ‘it’s cancer I’m so sorry.’

Along this whole journey I’ve apologised to those I love be it when I was initially given my diagnosis, when I’m in agony and aren’t as happy go lucky as I once was, or even when they ask how I am and I have to tell them I don’t feel well, I still apologise. The worst feeling in all of this has been seeing the hurt it has caused my closest people, on the day of my diagnosis myself and my best friend spent half an hour crying to each other on the phone, she’s never been a cryer and again I apologised because I was the cause of her hurt.

So far I’m one of the lucky ones, I have a fantastic pair of Macmillan nurses and an amazing gynaecologist who I’m dealing with who explained the main treatment is a hysterectomy, however due to my age and the fact that I’ve always dreamt of having a child of my own I went for the option of having the Merina coil fitted & taking medication called Megestrol once daily whilst having biopsies every three months to ensure the cancer is responding well & isn’t spreading.

It’s now September 2020 and after a year of excruciating pains & debilitating depression & anxiety I’ve finally found a pain relief that works for me and has given me a new sense of freedom & allows me to feel like my old self again.

I don’t know what the future holds for me, if I’ll ever be able to have children naturally, a surrogate, or through adoption. All I know is I’m taking life one step at a time and determined to live for the moment and refusing to be beaten by womb cancer.

Regardless of how it happens I’ll do whatever it takes to make myself a family of my own and I’m beyond grateful for the support from my family and my best friend because without them I wouldn’t be here right now aged 28 & braver than I could ever imagine I could be.

0 Comments

My womb cancer story by S.R.

16/9/2020

0 Comments

My name is Sam and I'm 35 years old. I found out in November 2017, at the age 33 years old that I had cancer cells in the lining of my womb.
I found out after 4 years of trying for a baby and being seen by consultants regularly. I pushed for a scan as I wasn’t happy with the pain and bleeding I was getting, and after many trips to the doctors and even A&E for the bleeding I was still told it was normal and nothing was wrong with me.

Obviously they fobbed me off for so long but I kept on at them and then after 3 biopsy’s & a pelvis MRI, it then showed I had grade 2 tumour, it went from cells to a tumour and my world shattered to pieces.
It went from trying for a baby to suddenly thinking I was dying and sobbing hysterically in the hospital saying i don’t want to die.

There was talk of chemotherapy which again just terrified me I couldn’t believe what I was hearing and I just wanted the cancer out of me straight away.
I needed a hysterectomy, which I had on December 19th 2017 and thankfully the cancer was contained in the womb. I had a full hysterectomy and 21 lymph nodes taken, luckily it hadn’t spread and I then had 4 lots of brachytherapy.
No further treatment but check ups needed every 3 months. I have just gone on to six monthly check ups and yes I am still a nervous wreck & heartbroken I’ll never have my own baby but one thing this has taught me is live life to the full.

I will never give up on my baby dreams and have the most amazing sister who has offered to be a surrogate for me and my husband. At the moment we cannot financially afford it but one day i will keep praying it will happen.

If ever in doubt see your GP and don’t be fobbed off.

0 Comments

Waiting & waiting - by J.M

12/9/2020

0 Comments

I’ve not been diagnosed with cancer ! But here’s my journey so far.

After 10+ years of no menstrual cycle I suddenly started bleeding. At first I thought piles, or I’d caught myself somehow with a scratch. Then the stomach cramps came too. I felt like a teenager not knowing if I had started my periods ( again, obviously). The blood got heavier, some days bright red, pinkish or brown. Then some rather large blood clots or lots of splinter size clots appeared. That’s when I decided to go to the doctors. I was immediately sent to A&E. My husband called a friend to take us, as he didn’t want me driving that far. ( It’s about 45-50 mins drive if traffic is good or can be an hour plus) Once there I knew it would be a long day!

Due to Covid-19 restrictions I had to register at A&E then go in by myself, while hubby & friend waited in the family room. I was soon called into Triage & assessed. I started to feel a bit silly at this point, thinking they’d see me as a Drama Queen! In all honesty I wasn’t waiting long before being called to see the doctor. Living in Spain & not speaking much Spanish is definitely frowned upon by medical staff ! I have to start every conversation with “ Lo siento, hablo muy poco español “ ( Sorry , I speak very little Spanish) Which always gets the same reply “ But you live here, no ?”

So I apologised and the doctor talks in broken English, which is still better than my Spanish attempts. After answering questions on my symptoms she’s examines me. I’m then sent for blood tests & given two drips ( to stop the bleeding). A further wait then called back to hear my bloods are ok, take these tablets for 5 days & wait for a call for a further appointment with Gynaecologist.
Bleeding stopped for 2 days but then returned. Four weeks later I went to see gynaecologist. Again due to covid I had to see consultant on my own, while husband & friends waited outside hospital. I had written down & translated into Spanish all my symptoms & recent events. I also mentioned that my Dad had had Cancer of Colon, liver, pancreas, stomach.
I was told to sit on “The Examination Chair” ( legs in stirrups) while she examined me. She called a nurse in with some urgency. I wasn’t prepared for the rest .... a hysteroscopy scan, two cytologies & a biopsy.
Think whole hospital heard me yell as she did biopsy, it took me by surprise & she hadn’t warned me! I was left to compose myself for about 5 minutes then rejoined them in the office. She said to sign the form, presumably for doing biopsy. I was told she would see me in 6 weeks. With the language barrier, it’s harder to speak out as you normally would & feeling fragile, I said OK & left.
I came out & cried while telling hubby what they had done. We google translated the notes she had given me to see exactly what she had just done ! Once home I was on google looking up all the words on the doctors sheet. Translating & evaluating it all. Thicker womb lining, so googled what it should be etc ... Everything pointed to Womb Cancer.
My husband told me not to google or to worry ! Easier said than done! I was back at work but working in tourism in Spain was getting worse with the pandemic & our flights from UK were suspended again, so back on ERTE ( Spanish equivalent of furlough) Giving me more time to sit & ponder !

The bleeding got worse & so did the panicking. I tried not to think about it. I hadn’t told anyone about my biopsy etc except the friends who took us to hospital. I have 2 grown up girls & a granddaughter living in UK & didn’t want them worrying. My husband mentioned my heavy bleeds & clots to our friends who said to go back to doctors as I might be getting anaemic. So off I went, only to be told to go back to A&E. Which I did. Same thing as last time, bloods taken, put on drip, tablets given to take for 3 days. I was told the results from biopsy weren’t back & would have to wait to be called back & would be in next 4 weeks ( 6 in total as originally advised!)

So here I am, bleeding had stopped for 6 days after last hospital visit but then resumed! I’m no nearer knowing what’s going on, what my diagnosis is or what journey I have ahead. All I know is the fear of having Cancer is the worse thing ever.
Every symptom I have points to C and not sure it could be anything else. Deep down I have that “ gut feeling” it is Cancer, but until I hear from the gynaecologist I won’t be totally sure. I’m hoping I’m wrong & this will all go away but not sure how, without a hysterectomy.
My journey hasn’t started yet, this is just a pre-journey , an insight, with the fear factor looming!

My biggest fear is having to tell my girls, who have already lost their father.

I sit & await my results , which are yet to come....

UPDATE : On my 3rd week after biopsy I was called for my results appointment in two days. Now the panicking really set in! At the appointment we went into a different part of the hospital, very quiet & serine. Sat waiting seemed like forever. The waiting room was further down the corridor from the consultant too, so you never saw anyone going in or out.
I was told that the results were inconclusive but she hadn’t seen anything “sinister”. She examined me & did another biopsy. She said the biopsy were “blind biopsies“ & they needed to see inside the womb more which would be another hysteroscopy but under general anaesthetic so they can look deeper & get a better biopsy sample. She indicated that if found, it would be early stages & treatable. The end results would probably be a hysterectomy.
Due to Covid 19 the clinics aren’t running as normal so I may be waiting up to 2 months for my hysteroscopy appointment. So I’m still waiting for a final diagnosis but feel better that they didn’t find anything big to begin with. It gives me hope.
I’ve now told my girls in UK & received a large bouquet of flowers followed by my youngest on a surprise visit to Spain ( & yes I cried when I saw her!) I now have their support too, which I’m so grateful for.

MORAL HERE TO ALL LADIES - know the symptoms of Cancer & please get checked out at the first signs of anything you know not to be right! Better to spend time at doctors & be wrong than leave it to grow!

0 Comments

My Cancer Journey – Karen Crump

9/9/2020

1 Comment

Aged 50 I had pretty much stopped having periods but was having intermittent spotting. Following a pelvic ultrasound scan I was diagnosed with fibroids, told that it was quite possible that I would get a bit of spotting due to the size of them as I moved around and that the fibroids would as reduce in size as I went through the menopause and not to worry.

Roll forward 3 years, I felt very well but was having hot flashes and so I went to see my GP to see if I could get some help. The locum Doctor prescribed a combined HRT treatment. I started taking HRT and felt marvellous in terms of my skin/ hair/ energy/ hot flashes but noticed my vaginal secretions were slightly different. I put this down to the additional oestrogen in my body and wasn’t worried.

The next year was very difficult for me in terms of work and family life. The spotting was increasing in severity and I was getting a bit of bloating, which I put down to stress. A year after starting HRT, I went back to my GP to ask if I should stop it. Luckily for me the Practice Nurse was concerned and arranged some blood tests Ca125 and Ca19-9. I stopped the HRT and the bleeding stopped almost immediately. However, the blood tests went on to show something abnormal so I was sent to the Gynaecology Rapid Action Clinic for a pelvic ultrasound scan. This time the scan showed some abnormal cells as well as a very thick womb lining and fibroids so further investigation was required. I was somewhat duped into having a hysteroscopy without anaesthetic so that I could get the appointment quicker (sooo painful, tragic that the NHS staff suggested that a couple of painkillers would suffice!). The biopsy conducted during the hysteroscopy confirmed that I had endometrial adenocarcinoma (a type of womb cancer) and I received this news on New Year’s Eve 2018. It wasn’t a very Happy New Year!

Initially I had been booked into my local hospital for a small operation in the New Year to remove the abnormal cells (a “polyp”) but this was cancelled when my cancer was diagnosed. I was then booked in for a laparoscopic (key-hole) hysterectomy in my local hospital.

Further tests were conducted (CT scan/ MRI scan/ X rays) which showed that the cancer had actually spread to my pelvic and para-aortic lymph nodes which staged my cancer at Stage 3C2. This meant that I couldn’t have surgery at my local hospital after all and I was referred to the Queen Elizabeth Hospital in Gateshead which is the Northern Gynae Centre of Excellence. It also meant that I would need to be treated with surgery, chemotherapy and radiotherapy.

Whilst waiting for surgery I went into googling overdrive to find out more about my cancer type and treatment options. I came across Womb Cancer Support UK and started following the posts. One post mentioned the “Canceractive” website and forum which I started following too. I purchased a book called “Everything you need to know to beat cancer” by Chris Woollams and started changing my lifestyle to maximise my chances of becoming cancer free. I also got a “Personal Prescription” from Chris Woollams to fine tune what I needed to do. I changed to the “Rainbow Diet”, ditched sugar; ate organic food wherever possible, took supplements including probiotics, walked every day, got more sleep, and eliminated stress wherever possible. There was also guidance on how to manage chemotherapy and radiotherapy effectively which proved to be very important (not necessarily what the NHS would advocate though!)

In February 2019 I was booked in for a radical hysterectomy at Gateshead which included removal of womb, fallopian tubes, ovaries, head of cervix, and the omentum (fatty layer under the diaphragm as well as pelvic and para-aortic lymph nodes. The operation was planned as keyhole surgery but with the possibility of a larger incision as necessary. On the actual morning of my surgery, I was informed by the Clinical Lead that there was a possibility that I might have two primary tumours and that ovarian cancer may be present too so I was being prepped for possible bowel involvement and had to give consent for a stoma should it be necessary. As I was wheeled into the theatre waiting area five hours later, I was informed that I was having a different Consultant, a different Anaesthetist, a different operating theatre and a different operation! So I had to give my consent all over again…. This time I was definitely having a major operation with a vertical incision. This was a real low point and I felt so vulnerable in that moment as my cancer journey was ever changing and getting progressively worse. However, I was confident that I was in the right place for the surgery, I was fit as I could be for the surgery having prepared well, and that I would have a positive outcome. The surgery took five and half hours which scared my husband and son witless as they thought it would only take 3 hours, but I am glad to say that the surgery went very well and there was no Ovarian cancer to worry about too. I woke up able to wiggle my toes (no paralysis from the epidural) and no stoma bag!! I recovered from the surgery really quickly and was allowed home after 4 days with a very neat scar!

After recovering from surgery for two months, I went through 4 three-week cycles of chemotherapy (Paclitaxel and Carboplatin). I seemed to cope with my chemotherapy very well which I put down to eating well, taking my probiotics and supplements, taking regular exercise and having hyperbaric oxygen therapy which I arranged for myself although my Oncologist didn’t support this.

In September 2019, I started 25 sessions of radiotherapy to my whole torso at my local hospital although my treatment was supervised by my consultant based in Newcastle. I felt sick on my very first treatment and was informed that I couldn’t possibly be feeling sick as that side effect doesn’t start for a few weeks and they suggested maybe I was just worried? Over the next few weeks, my side effects became increasingly severe and the local staff continued to ignore what I was saying and refused to examine me. I self-diagnosed “severe radiation proctitis” and was so concerned that I went to see my GP. He agreed with my diagnosis and said that I was very close to needing a colostomy bag as the damage was so great to my lower colon/ rectum from the radiotherapy treatment. We researched the best practice treatment regime to repair the damage and he wrote a letter to the hospital staff to advise pausing my treatment and explaining what medication was required. The next day it took me hours to finally arrange to get the prescription from my local hospital that I needed to heal the damage. I chose to stop radiotherapy treatment at this point. I completed 19 of the planned 25 sessions which didn’t make my Radiotherapy Consultant very happy but I didn’t want to risk further surgery arising from the treatment itself.

A month later in October 2019, I was fully recovered from my severe radiation proctitis and I was very fortunate to be told that there was “no evidence of disease.” I am now on three monthly check ups alternating between my Gynaecologist and Oncologist and remain cancer free after 10 months. The check-ups comprise blood tests, a chat about whether I have any symptoms, and a physical examination when I see my Gynaecologist.

Key learnings from my cancer journey – be gynae cancer aware, act early (time really does matter!), be flexible, the cancer journey is different for everyone and it isn’t always straight forward, get the best hospital possible for treatment if you can, stay positive, investigate lifestyle changes and alternative treatments to support you, be empowered – do what is right for you and your body as it is your cancer journey! (and change your consultant if necessary…)

1 Comment

My story by K.C

5/9/2020

0 Comments

I was 52 years old and going through what I believed was the menopause, then in March 2019 I started to have a slight show, not all the time just once every now and then. I didn’t give it a second thought. By mid April I was constantly bleeding - a permanent period but not as heavy as I used to get them so still thought it was just the menopause.

We went away for the early May Bank Holiday weekend with friends, a journey which took us 2 hours in the car. In the time it took us to get there I’d bled so much it had soaked through to the car seat. Alarm bells rang and I was on the phone to the Dr first thing on the Tuesday morning.

Blood tests showed nothing and still no let up in the bleeding. Within weeks I’d been for X-rays and scans - it showed the lining of my womb was a “little” thicker than it should be. It was in fact, as I was later to discover, 23mm.

I can’t fault my GP, she kept pushing for more tests and only when I had the biopsy, then the results, did I find out I had cancer of the womb.

I had a complete hysterectomy the day before my 53rd Birthday. Two weeks later I went for the pathology results to find out the grading/stage. Stage 1A, Grade 1. The best result I could have wished for. I feel incredibly lucky that my GP kept pushing those tests. I know how fortunate I am to have caught it early but it doesn’t stop the feelings of guilt. Guilt that others are not as fortunate as me and my biggest fear is that it will return somewhere else.

It has highlighted other health issues which are still ongoing and will be for some time to come. My family and a few close friends have been my absolute rocks through this journey and continue to be through everything else that’s in front of me.

Ladies, keep fighting that fight and never give up. You are stronger than you know❤️

If you would be willing to share your story to help raise awareness then please get in touch using the contact form.

0 Comments

My story by Clare Watkins

2/9/2020

1 Comment

I am writing this from my bed; I am currently 2 and a half weeks post-op. I had a full hysterectomy including ovaries and cervix (completed through keyhole surgery) after a diagnosis of endometrial (womb) cancer.
When I had my diagnosis, it didn’t come as a shock to me – it was more of a shock to others around me. Having to tell my loved ones that I had The C Word diagnosis was the worst part. However, hopefully my story will help others to know and understand the signs and to get checked out what doesn’t seem right.

I was diagnosed with Polycystic Ovaries (PCOS) in my early 20s. My GP told me on diagnosis that I had a 30% chance of ever conceiving and that this percentage would go down with time. At this time I wasn’t with anyone, was quite fresh out of university and certainly didn’t have plans to start a family.
I had been experiencing very heavy and irregular periods for a long time and went to get it checked out. During this time I was put on the pill, had a coil fitted and swiftly removed because my body began to reject it and contract it out. Nothing worked. There is a lot of irony surrounding how birth control can be used to help with gynaecological issues when you have been told you have a low chance of ever having a baby…I have thought about that a lot over the years.
…
Time moved on and symptoms remained the same. My periods were still the same, but then the irregular periods started. I would have a period then not have another for 2 to 3 months. Where most women would be buying a pregnancy test, I just had to sit there and wait.
I still never found anyone I wanted to settle down with and try for kids. During my whole life since my teens I struggled with my weight – up and down. I know this isn’t helped by PCOS, but I have also always been a comfort eater. It seemed like a never ending cycle (excuse the pun) – nothing seemed to be helping anything else. It was just the way I was.
I’m going to fast forward a few years…in 2014 I met my fiancé. I was 32 then. He’s amazing. We are getting married in April 2021. When we met, we hit it off straight away. I knew he was the one I would spend the rest of my life with. He is 10 years older than me, and had 2 children from a previous marriage. He had also had a vasectomy around 7 years prior to our meeting. On knowing this, I was faced with a decision to stay and forfeit the chance of even trying for children, or leaving and trying to find someone else. I stayed. His children were a gift to me. They are also amazing.

It’s easy to say on hindsight, but I do believe in some way that someone somewhere was shielding me from the heartache of trying and failing to conceive and carry a baby. I have shed many tears over never being pregnant, never being able to know what it feels like to carry a baby and then nurture a child of my own. I have always been maternal and always felt that I would have had at least 2 or even more children. Life and maybe fate just takes over sometimes.
I still had issues with my menstrual cycle and thought I should go and get some investigations done. I was eventually referred to a brilliant consultant who didn’t palm me off or put it down to ‘women’s issues’. She ordered an external and internal ultrasound scan. The results came back and it was decided that I was to have a hysteroscopy for more investigation and biopsies. I had this operation awake with a very non-descript local anaesthetic. They decided it would be better for me to not have general anaesthetic due to my weight. This, at the time, was probably the most painful procedure I have had, awake! I will save you the gruesome details but if you want to know more about what this is like, I will be happy to share. It was at this point that I thought I needed to do something about my weight – for my health and for my upcoming wedding.

The results came back – I was diagnosed with endometrial hyperplasia – a pre-cancerous condition which showed an unusual thickening of the lining of the womb. It is possible to reverse this condition through losing weight and I was also prescribed progesterone tablets. A repeat biopsy was planned for 4 months’ time to keep an eye on the thickness of the lining of the womb.
I started the tablets and continued with my weight loss. Then the Coronavirus hit. The whole country went into lockdown. My repeated biopsies were meant to happen in April, but I had them in June 2020. I was commended for my weight loss and it was hoped that this would have improved my condition, but within 2 weeks I was called to the hospital to see my consultant. I knew that something was wrong, particularly as hospital visits were still few and far between because of COVID-19.

After a restless night, I made my way to the hospital. I had to go alone due to restrictions at the hospital. Masked up, I sat waiting for my consultant and eventually made our way to a consultation room. I was given the news that I did indeed have womb cancer. My consultant apologised to me – she was sure that the condition would have reversed, but it didn’t.
At this point I just want to say one important thing. There are many people who everyday will get a cancer diagnosis. I have close friends living with cancer, my brother’s girlfriend died of a gynaecological cancer in her 20s. My fiancé has lost many family members to cancer. Many families are devastated by cancer every day. This is not a tale of woe for me; I want to make this clear. I am not writing as an outlet to feel sorry for myself, but rather to spread awareness. This has become more important to me since my diagnosis than anything.

It was thought that my cancer had been found early. An MRI scan was booked to confirm this and to be discussed with the MDT panel. I met the Macmillan Oncology nurses who talked to me and gave me a lot of information to read. They also gave me a telephone number so I always knew I had someone to talk to.
I felt quite apprehensive about the MRI scan; having been in generally good health to this point, I didn’t know what to expect apart from a feeling of claustrophobia. Again I had to go to this appointment alone, but this time my sister came with me and sat in the car. I’m not going to say that having an MRI is my favourite thing to do, but it wasn’t as bad as I had thought. It was noisy, and it took longer than I thought but I kept my eyes closed the whole time so I never saw how close I was to the scanning machine.

My results came in and it was confirmed that I had stage 1A cancer. A complete hysterectomy was planned including cervix and ovaries. Despite the restrictions of COVID-19, I had my diagnosis and my operation within 6 weeks.
I am now waiting for the results from the path lab where everything that was taken out was sent to be checked. This will then confirm whether I need further treatment such as radiotherapy. I hope to have a follow up appointment with my surgeon in 6 weeks. I am now in menopause. I don’t know if I can have HRT due to the hormonal issues that caused my cancer.

I will write a follow up blog about my recovery once I have had the results confirmed.
So here I am writing to ask you – if you or someone you know has symptoms that are worrying you, if something doesn’t seem right please get it checked out and don’t be fobbed off. If it’s caught early then it can be treated.

1 Comment

What we all fear - by NP

31/1/2020

2 Comments

Reoccurrence… The word each and every one of us fears the most. 'You have cancer' is hard enough to hear the first time round but what about the second?
In November 2016 I was diagnosed with endometrial cancer. It was found by mistake, part of another routine operation, and my life changed there and then. The consultant asked if I understood, I said I did, but I didn't. I didn't understand the impact cancer would have on my life. A radical hysterectomy later and no further treatment required. A long year of recovery, surgical menopause and getting back to normal. A sigh of relief and a 'thank God that's over' little did I know what was round the corner.

Fast forward two years to the day, there I am, same room I had my initial diagnosis, legs akimbo, having a biopsy. No symptoms of reoccurrence but a small lesion at the bottom of my vagina. The consultant told me the chance of cancer was very small. I'd heard that once before, two years ago, when I was 'too young for cancer'. A week later I was at work and I started to bleed..I hid in the toilet but it didn't stop.
I rang 111 and ended up at A&E.. I thought that was it, my time was up.. A mass pv hemorrhage later and I was hooked up to two pints of blood in resus. That was the moment they told me… Semi conscious after almost bleeding to death.. Your cancer is back. Oh.. And its metastic so its automatically stage 4, possible spread to the liver.. Tests.. Scans…All I could think was I'm lucky to be alive so I'll deal with that tomorrow. I told my family in resus, the last time they saw me I was semi conscious so I think they were just relieved I was alive, so no-one had time to process unlike if I'd been told in a normal appointment, we just accepted it.

I was transferred to a ward and the next morning was visited by the oncology team.. They re-iterated the same conversation; Stage 4.. do you understand? Yes, I understood, I understood it was time to get back on the cancer rollercoaster.

The weeks that followed were as expected; tests, scans, more tests, recovering from the blood transfusion, traumatised that everytime I'd go to the toilet I'd be bleeding, thinking yet again about my own mortality.

Anyone who's had cancer will tell you the same. After the anger comes the 'why me?'.
43 years old and cancer twice. What did I do to deserve this?
After this comes acceptance. Then the plan. Everyone waits for the plan. Once it's in your hand the control is passed back to you and you can begin to process the shock.

Radiotherapy and brachytherapy followed, neither were pleasant. But even though I'd had no adjunctive treatment the first time so many things were familiar. The oncology nurse knew me well, she could tell me what would happen, reassure me. When she did my holistic needs assessment (for the second time!) I remember the conversation well. She asked what my biggest fear was.
It wasn't dying, it was uncertainty. Everyone dies someday and when your times up its up. My biggest fear was that it wouldn't work. My CNS told me a story about another lady she supported who has lived an amazing life for 15+ years (so far) with reoccurant endometrial cancer. She told me this was the first line treatment, she told me about all the other treatments that I could try if this didn't work, she gave me the one thing everyone needs.. Hope.

Ten weeks later and treatment was over. It was nowhere near as scary as the first time round. The environment was familiar, the people were familiar, the tests were familiar, the routine was the same, the familiarity was safe. Nearly a year on and I'm still recovering from the side effects of the mass blood loss and the treatment, but each day I remember I'm lucky to be here.

Reoccurrence, a scary word.. In reality not as scary as you imagine it to be.or you build up in your mind. The fear never really leaves you, it just get less and less each day. You still worry about every lump and bump, but no worse than the first time round, no worse than the fear that every cancer patient has.
And if it's 'third times a charm' for me then so be it. I will remember the words of the CNS and how many options are still out there for me.

I will never let cancer win.

2 Comments

My womb cancer story by S.H

22/9/2019

0 Comments

I’m a trans masculine non-binary lesbian and was diagnosed with womb cancer last year at age 37.

I always had problems with my periods being heavy and painful. I was diagnosed with PCOS and endometriosis. I struggled to get doctors to do anything about it as I had no interest in having children.

My periods got even worse than usual and my doctor prescribed txa. It all finally came to a head in December 2017 when I collapsed through blood loss and had to go to A&E. That triggered them looking into the problem but meant a series of tests which I found very difficult to deal with given my gender dysmorphia.

They gave me a smear test, an internal and external ultrasound and they attempted a hysteroscopy but I couldn’t cope with that so I needed to have a second attempt under general anaesthetic. They told me they’d take a biopsy while they were having a look “just to be on the safe side”.

Getting a call from the hospital saying I needed to attend an appointment first thing the following morning. It wasn’t exactly a surprise when they told me I had cancer. The consultant was careful to explain that treatment would mean I would be unable to have children. They seemed surprised when it didn’t appear to bother me but carrying a child had never been something I wanted to do. I am the youngest person they have ever treated.

I was lucky. It was caught early. I was stage 1a and all I needed was a hysterectomy with no further treatment. I live alone several hundred miles away from family and as I was unable to care for myself, my mother looked after me for ten weeks. I’m not out to her and stifling that part of myself for so long was painful. I became very passive.

The medical team don’t seem clued up on how to deal with someone in my situation. I still need regular checkups with my consultant and they involve an internal examination. When I expressed that I found anything to do with penetration difficult, they actually said “don’t you use toys?” Not those types I don’t.

I tend to present at my most feminine at my checkups. I’m surrounded by women in the waiting area and feel uncomfortable presenting masculine in what is a very female space.

I think more could be done in gynaecology for those who are LGBT+. Everyone’s experience is different but not treating us as stereotypes would help.

0 Comments

Importance of female friendship by Margaret Chandler

18/8/2019

1 Comment

I have recently returned from a trip to Canada,where I met up with my penpal Julie, who I'd corresponded with for 50 years, since we were both 10 year old Girl Guides. We'd met each other as 15 year olds in 1974 and again briefly in 2001, but this was the first time we'd met in Canada, thus fulfilling a childhood promise we made to meet one day in Prince Edward Island (PEI), the setting for one of our favourite novels 'Anne of Green Gables'. This is the 1908 novel by LM Montgomery, telling the story of the redhaired orphan Anne Shirley and the friendship with her 'kindred spirit' Diana.

Julie and I had a wonderful time exploring PEI together, visiting Green Gables, seeing Anne the musical and immersing ourselves in the landscape which inspired the novel. We had time to get to know each other more intimately and catch up with each others lives over the past 50 years, and despite some prior reservations about whether we'd get along, these worries proved unfounded.

Since returning, rather reluctantly, to the UK, it's given me time to reflect on the power and importance of female friendship and support. Despite celebrating my 37th wedding anniversary recently and having shared both good and challenging times with my husband, it has always been my female friends that have been a constant in my life, especially when life has been toughest.

I am always indebted to the NCT mums who were there during the early days of motherhood, when sleep was in short supply and the days and nights seemed to merge into one. You saved my sanity on many an occasion!

The most traumatic time of my life was being diagnosed with Womb Cancer over 6 years ago. I'd not heard of the disease before diagnosis and knew nobody with the condition even when I joined a Gynae Cancer Support Group. The lack of support and isolation took a toll on my mental health and I was referred to the local Psycho-Oncology Service where my health began to improve. However the most important support for me came from the virtual world, when I discovered WCSUK by chance whilst scrolling through Facebook 15 months after my diagnosis. It was at this point I realised I was not alone. These women knew exactly what I was going through and the true road to recovery began for me.

I was able to return to my Latin Fitness Camp Dance Class, a group of fun, supportive women who have joined me on several Race for Life events, raising money for Cancer Research. Since diagnosis and as part of my recovery, I have taken up cycling and become a member of Leicester Women's Velo. This group has helped me raise awareness of Womb Cancer on 2 annual bike rides during September, and have helped me reach cycling goals I could only dream of.

Finally I am so grateful to have recovered both physically and mentally from Womb Cancer that I was able to make this very special trip to Canada, an experience I will treasure for the rest of my life!