Womb Cancer Support UK

When September becomes June.

29/8/2023

If you have been with us for some time you will know that September is womb cancer awareness month.
But not any more.
Let me explain.

When we first started back in 2011, we took September as "our" awareness month here in UK, following the lead of our US #PeachSisters who had been using the month to raise much needed awareness over the water.

So every September we have used the month to make plenty of noise about womb cancer & spread the word. I have always believed that womb cancer, as the most common of the gynae cancers, needs & deserves a month of its own.
However in recent years September has been used by some as gyne cancer awareness month, even though cervical and ovarian cancer both already have their own awareness months.

Earlier this year WCSUK was asked if we would be part of a new initiative being organised by International Gynacologic Cancer Society who wanted to make June International Uterine (womb) caner awareness month.
We thought about it for a bit, unsure wether to make the change but then realised that as it was an international thing, it would raise awareness globablly about womb cancer so we got on board with it.

So in 2023, September became June and International Uterine (womb) cancer awareness month was born.

It was great success with groups, organisations & charities from around the world getting involved and social media certainly went very peachy.

So, does this mean that womb cancer awareness will no longer happen in September?
Well no, because we try to raise awareness every day of the year about womb cancer and will never stop doing so.
But its nice to know that there is now a global initiative to raise much needed awareness of this cancer and that by all talking together, we can really #GiveWombCancerAVoice.

As some of you may know, I have been forced to take a step back over the past few years since my health got considerably worse during lockdown and now with my husband having been diagnosed with Parkinsons, I am sadly unable to devote as much time to this cause as before but now that we here in UK have the wonderful Peaches Womb Cancer Trust I know I can leave you in their safe hands.
I urge you to follow them across their social media platforms if you are not already and help spread the word about womb cancer. They are as passionate about raising awareness & supporting those who have been diagnosed with womb cancer as I am.

So there you have it, the awareness never stops really, but now we can come together in June as a global voice and say #BeWombCancerAware.

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It's our 12th Birthday today!!

11/4/2023

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11th April 2011 seems a very long time ago now, but that was the day that Womb Cancer Support UK came into existence.
It was the day that I set up the Facebook page and from then on we have grown into what we are today.

Originally we started out as just a FB page offering support to others who had been diagnosed with womb cancer as there was a lack of dedicated support.
Many of the orignal ladies who joined us had been members of a US FB group and although it was good to have somewhere to be able to talk to others in a similar situation, it often felt like we were on the outside looking in because of the way that our health system differs from the US model.

So, instead of saying "why doesn't someone start a UK group" - I just did it and that was that.
It soon became clear that there was a lack of awareness about womb cancer so the group quickly morphed into a support & awareness group.

The Facebook page was followed by me getting onto Twitter and then making simple Youtube videos to raise awareness. Nothing fancy mind, just simple videos to help spread the word.

Over the years, we have gathered a sizeable following across our social media platforms which now include Instagram and our own website.

The awareness raising is as important as the support we offer to those who have been diagnosed either through out main FB page or our closed private support group which currently has over 400 members and is a safe space for those who seek support, information or just a shoulder to cry on when things get tough.

Some of those who joined us in the early days are still members of the group who have stayed around to offer support to those who are newly diagnosed.

The support that everyone offers to each other is heartening and many of us have become friends, even if it is only online.

I have dedicated the past 12 years of my life to running WCSUK and its been tough at times as my own health is far from good and there have been several times when I have wanted to stop.
But I haven't; because supporting those who have been diagnosed and raising much needed awareness is important to me.
However, I no longer need to dedicate so much time and effort to doing this as there are now others who are helping to #GiveWombCancerAVoice and I know that I can take a step or two back now in the knowledge that womb cancer is getting the attention it needs and those who have been diagnosed can get the support they need.

We have been lucky to have had the support of some other great organisations like Diane at Menopause Support, Sam at Jo Divine, Neelam at Cysters, Maureen at PCOS Vitality, and not forgetting Eve Appeal & GO Girls both of which are gynae cancer charities.
Last but not least a big mention has to go to Peaches Womb Cancer Trust which was set up a couple of years ago and is a dedicated womb cancer charity run by an all female team of gynae experts based in Manchester.

Womb Cancer Support UK has never been about me - its about all the wonderful Peach Sisters who have been part of it over the years. Those who reached out to us for support after being diagnosed; those who stayed with us after they got the all clear to offer support to others; those who shared their stories by writing guest blog posts for the website; those who shared their story with local media and gave talks to help raise awareness.
I am forever grateful to each and every one of you for helping to #GiveWombCancerAVoice over the past 12 years.

I set up WSUK because I was scared & lonely when I was diagnosed at the very end of 2009 and I thought there might be others out there who fet the same way.
I was right, there was - lots of them.
Together we became a strong force who helped each other out.

#NoOneFightsAlone

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The good, the bad and the frustration: My journey so far by CB

29/5/2022

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Pre-admission:
In about November 2021 whilst lying in bed one night I felt ‘very moist’ a rarity in someone who had been through the menopause over 10 years ago. A couple of days later I noticed blood, as if I was having a period. More brown than red but even so very unusual and it had never happened before. Surely this wasn’t right, so I rang the doctors, they gave me an appointment that day with a senior nurse practitioner.
I saw Liz, she was lovely, very gentle and kind. She looked internally, always hate this, agreed it shouldn’t be happening and she explained she would do a referral to the local hospital. She had a choice of two referrals. Which one she did I am not sure, but it worked.
Within a couple of weeks of seeing Liz I received a call from the hospital to go for an ultrasound. I was informed to take strong painkillers prior to going. Why?
My twin sister kindly drove me and provided necessary reassurance. An ultrasound was conducted by a nurse and a trainee, after the usual health questions and weight height etc etc. Not painful just a little uncomfortable. They found something!!! They thought it could be a fibrous polyp. I had no idea what that meant or what the next steps were.
Next off down the corridor to see a consultant who explained I could have the polyp removed then and there. Gas and air were available. Never having had children I didn’t even know how to use it. Whilst explaining the procedure one of the nurses uncovered the instruments, fight or flight. Flight. Great words of advice from my sister who fainted in pain at a similar procedure, if you can go in as a day patient, do so. Take heed Carolyn go with your twin’s recommendation. I explained my fears and they offered me the opportunity to have the procedure under general anaesthetic. Off home, no, Pre op checks, total duplication of what I had had done just an hour before. Frustrating but better safe than sorry.
Received a call from the hospital to tell me when to go in as a day patient. When in day case I explained that I am usually sick after an anastheatic, ‘you will be fine’. All went well until I was being wheeled back to the ward and yes, I was sick in the oxygen mask. Discharged home having been to the loo and eaten (two bites of a sandwich). Home and to bed, no pain just tired. Results would be 2 – 3 weeks. Next an appointment for an MRI. Never had an MRI, it was fine, although a little cool. The unit is outside at my hospital and they blow cold air on you.
Received a call at 6pm from the hospital approx. 2 weeks later, an appointment had been arranged with oncology. Eek. OK so was my understanding of oncology correct. Google here I come. Then calls to very close family.
Twin sister attended my oncology appt. We discussed prior to the appointment what I should and needed to ask. Luckily she used to be a nurse so we called on her expertise. Debbie the oncology nurse was lovely asking if I knew why I was there. I explained the call…….that shouldn’t have happened. She gave me lots of literature, a little overwhelming but well worth the read when you are in the right mindset. I still felt positive.
The results showed I had stage 3 cancer, as cancer was found in the polyp and the womb lining. I was being referred for a CT scan of my upper stomach and chest to see if the cancer had spread and for a full hysterectomy through keyhole which had already been agreed with the ????team. (the team meet weekly on a Thursday to discuss each patient, so calls are usually made later on a Thursday or Friday). Call made to car insurance – I had to notify them of my cancer diagnosis. I also suspended my gym membership.
CT scan at initial hospital first thing and then pm appointment with oncology at the second hospital. I was hoping my CT results could be seen prior to my appt. No.
Met with consultant, another oncology nurse and a registrar. They explained that I would be having a full hysterectomy through keyhole surgery, going to the doctors and being referred urgently was a good thing. After the hysterectomy apparently, I would need radiotherapy. Umm, what is that? I explained about my sickness and my fear of the catheter. Lots of reassurance from them and surprise that I was so positive. My main question, when would I be having the op. They couldn’t give me a date. . Consent paperwork signed and an agreement to take part in a trial. Later I found out through a friend that from seeing the consultant to treatment under fast stream NHS should be no more than 30/31 days. Shame they couldn’t tell me that because I felt my life was on hold just waiting for some form of communication from the hospital/s.
A while later I received a letter giving me an admission date (admission was about 28 days after seeing the consultant). I had to ring the ward the night before to ensure a bed was available. I rang at allotted time, no bed but I could go to a different ward and after op either go to gynae if there was a bed or to another ward. Umm. Now I cried. Perhaps it’s the norm but for me I felt I didn’t matter, It wasn’t important. On the plus side a friend had called round on the Sunday with a little goodie bag, essentials. Mints, wet wipes, a magazine, lip balm, hand gel, some tissues and a long lead charger for my phone.
CT results in, 3 nodules seen in lungs two look OK the other they aren’t sure about recommendation another scan in 3 months.

Admission (1st March 2022)
Day 1: The day arrived and off I trotted, alone due to covid restrictions. Went into a day ward and one of the surgeons came to see me, reviewing the paperwork and answering questions. She asked if I wanted her to ring my next of kin to tell them how it went, yes please. That really helped calmed my and their nerves.
Within an hour I was being prepped explaining once again about my fear of the catheter and my sensitivity to anaesthetics. I was assured I would be ok. Next thing I know I am awake and in gynae. Downside of not going to the ward beforehand was my bag was on the floor not unpacked and I couldn’t reach it, nor allowed to lift. Observations initially every 30 minutes and blood sugars taken frequently. I really wasn’t in pain but took the opportunity for pain killers. Not hungry or thirsty at all. But best to drink – note to self, take some cordial if ever I am admitted again. Luckily no visitors allowed and no one in the ward watched TV so it made it quieter which was really appreciated.
Day 2: More obs, catheter removed whilst talking and distracting me, didn’t feel a thing. Thank you. Told I needed to use the loo before I could be considered for discharge and that my urine would be measured, apparently you need to pass a certain amount. As my oxygen levels kept dropping it didn’t look like I would go home today.
Off to the loo, walking or should I say shuffling with the support of a nurse. Gently, gently Carolyn. Went to the loo (different feeling altogether), washed hands, opened door, held onto door jamb, felt a little funny and said I think I need some help. Next thing I heard a loud bang and there are about 6 people around me. I had fainted, never fainted in my life so hadn’t a clue. Dignity out of the window, still only had the hospital gown on. Note to self as soon as you are taken to the toilet take some knickers and your nightie with you.
Hurt my head and my wrist when I fell. (hit metal rail, bidet and floor) They examined my head and already, within a couple of minutes, had a potato size lump on my head. Back to bed, with oxygen. More obs and a visit from the doctor. Next a visit to x-ray and CT scan for my wrist and head. All OK. Took canular out of my hand as that was one of the reasons for the pain in the wrist. (beam me up scotty) Jab into stomach.
Day 3: Still difficulty with retaining oxygen and breathing, it felt like someone was sat on my chest. Oxygen levels kept dropping every time they took me off oxygen. At some point in the day they thought I could have either a blood clot or was having a heart attack. Spray under my tongue to open up my veins, an ECG and back down for a x ray and CT scan plus equivalent of 3 jabs into my stomach. I am totally bruised.
The fluid injected for the CT scan didn’t give the warm sensation it was expected to?? They found I had a lower respiratory chest infection, antibiotics prescribed. Less pain killers requested or taken. Still no appetite. Blood sugars too low. Asked nurse to check down below as it felt very sore – just bruised.
Day 4: Canular started to leak into my tissue, redness in my skin. That canular taken out. New canular inserted. Early shower and hair wash whilst wearing the lovely green compression socks. Much easier to have them peeled off when wet. Now a request to brush my wet hair as I couldn’t due to the canular in my arm (where the normally draw blood) and the large bump on my head. Felt clean, yippee. Still no appetite. But yes gone to the loo,.always a celebration. Now the new canular started to leak into my skin, taken out. Oral antibiotics given. Doctor visited and said probably home in 2 days. Stomach jab.
Day 5: Painkillers and my other meds taken, started to feel very sick, was sick. Registrar came round (8.30 am) and said I could go home today. Yippee. Text to home, should be about lunchtime. Lunchtime came and went………I waited and waited and waited for discharge papers and meds. I got irate as I just wanted to go home. If I had known meds took all day I would have walked very slowly to the pharmacy myself. Eventually they let me go agreeing I could come back tomorrow for the discharge papers and the meds. Note discharge is usually between 7 and 8pm. Felt today that I wasn’t important, if that makes sense. I was going home, nurse even questioned if she needed to do obs. Nurses kindly carried my belongings to the door as no one allowed on the ward. Stomach jab.
Results in about 3 weeks.
Lots of biscuits and sweets brought in for the staff.
Arrived home, cup of tea and bed. Started to itch. Rang ward I have a severe rash……..they will check tomorrow when I go back for discharge papers/meds.

Discharge
Back to the hospital for discharge papers and meds. One of the very kind nurses put us in a side room and brought a cup of tea and a doctor. Allergic reaction to the antibiotics. By this time the rash had spread from my neck to my ankles. Different antibiotics given. Husband had to take prescription to pharmacy before it closed at 1pm. Made it. Went home with papers and meds. Back to bed. Over counter antihistamine taken.
Rash not subsiding so call to my GP, photos sent. Prescription for stronger antihistamine, steroid cream and moisturizing cream. Tired but walking further and further, in fact probably too far and back to bed again. At this point the comfiest place was bed, laid down. Sleep was difficult as trying to get comfortable and sleeping on my back was something I wasn’t used to. Still no appetite.
Going to the toilet was different, different sensations altogether. No one warned me of this. A friend lent me a child’s stool so when I sat on the loo my knees were raised above my hips, gravity helps as does stool softener.
Next a trip to the GP, my skin had stuck together and then torn apart leaving it red raw. More cream. Still embarrassed about all this examination.
Not informed of any follow up, will I or will I not be seen again? Jab into stomach required daily for a total of 28 days.

Results
Husband’s birthday, letter received from hospital with follow up consultation a month hence. Call to oncology they will investigate and ring me back. Rang back someone would ring me later the same day. One of the consultants rang, Stage 3 cancer (as it had spread into womb lining from polyp), sentinel nodes clear. That is good news. A referral will be made to Christies for radio-therapy. A copy of the letter would be sent to myself and my GP. Thank you. Calls to family.
A week passed nothing a second week passed nothing received. A call to oncology, they would chase up if I hadn’t heard shortly. A call to Christies, no referral received! Calls to oncology made, going round in circles. Now getting frustrated, again feel my life is on hold. Eventually I received a copy of the letter addressed to Christies now I could ring the secretary and I did, guess what, no referral received! Christies chased this with the hospital, I was told various e-mails went back and forth. Felt like 3-4 weeks had been wasted. I know it isn’t long but when you are waiting everyday to hear something it feels like forever.
Still tired but doing more. Adhering to the rules which it difficult when you are used to doing everything. Only drove after 6 weeks, not because of any pain or feeling I couldn’t do an emergency stop but the need for concentration.
Christies rang, had I received their letter no! An appt was made, the letter being received later that day.

The Christie, known locally as Christies (May 2022)
Arrived early, found where I should be going. A questionnaire next asking for information on my bowel movements over the last 2 weeks. Apparently, it is scored? Next height and weight.
Later than expected I was seen by the consultant who was very pleasant and down to earth. She gave me some literature, explained the procedure, answered questions and gave me an internal examination. I advised her I am very embarassed about putting everything on show. I know they see many women everyday, its just me.
Treatment would be 3 sessions over a 2-week period within the next 3 weeks. Before I left, I saw another oncology nurse who talked to me about a dilator and demonstrated how to handle/use it. It is to be used daily 4 weeks after treatment, reducing its use until 12 months later. The lubricant required can be obtained through my GP……..another embarrassing call to make. And yes, if you want to use a vibrator you can.

Brachytherapy (May 2022)
First appointment in the ‘vault’. Another internal for them to access the size of the equipment required. Laid on the bed, feet at the bottom while they inserted a tube to which they attached the radiotherapy tube. I was then wheeled nearer the machine. Must admit to getting a little upset, more about the embarrassment (its me) and the thought of what was about to happen.
I laid still, everyone left the room, although I was informed to raise my hand if there were any problems, they could see me from another room. Radio 2 played and I drummed my fingers to 2-3 records. I heard some noise, a bit like a pulsing but not loud, and I couldn’t really feel anything.
Everyone then returned (3 staff), withdrew the applicator, told me where the dry wipes were, I could now get dressed and leave (needed due to the amount of lubrication). The initial procedure probably took about 20 minutes. Checking my ID twice, inputting my details into the system etc etc. After effects, just a metal taste in my mouth within minutes of the treatment which lasted about 8 hours. Next time take mints!
24 hours later, second treatment. I thought I would take the staff some goodies, these were greatfully received. (marks and spencer food on site). 2 staff today, one of whom was different than yesterday. Usual – lie on bed etc. Inserted tubing but today it hurt, not too much but enough to made me gasp. A small adjustment was made. Everyone left the room and once again I listened to music etc etc. Again, a metal taste.
Next day I had to rush to the loo…….and two days later I slept for 2.5 hours in the afternoon, decided the adrenaline had worked its way out of my system. At this point no other side effects.
Christies confirmed that once my treatment had ended, they would contact my GP in order to add a lubricant to my presecription.
Last treatment. Must admit to dreading this. Will there be pain again?
In between treatments I chased up my CT scan of my chest and attended to date awaiting results.
Worth noting a couple of things; most communication has been phone calls which can catch you off guard, having to make a note of times, dates etc especially when you could be busy/at work when you take the call. Also, they told me they wouldn’t leave a message unless any answering message provided your full name. If you don’t hear anything chase it, and chase again. If I hadn’t chased my brachytherapy and secone CT scan I still believe I would be waiting.

Luckily, I have remained positive - just frustrated as to the lack of communication on approximate timings. Family have been supportive although not all know everything after losing my brother to cancer last year, sometimes a little white lie in needed. What the future holds, who knows. Which of the three hospitals will monitor me, if they do I have no idea………communication please.

I hope my blog has provided you with an insight into my journey.
Good luck with yours x

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My womb cancer story by KU

22/5/2022

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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.

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The crushing womb cancer diagnosis from a family perspective by DH

15/5/2022

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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.

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My experience of endometrial cancer and grief by PK

8/5/2022

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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.

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My womb cancer story by TB

20/2/2022

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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 :-)

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Going, but not gone.

11/7/2021

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By this time of year, preparations for September’s womb cancer awareness month campaign are usually underway.
I’m usually putting the call out for women who would be willing to share their story in a guest blog post for the website or asking if anyone would be willing to have an awareness table somewhere. In the past, I’ve made videos; organised online awareness events; held online auctions of my handmade items to help raise funds & awareness, done radio interviews, written blog posts & newspaper articles, and organised our Birmingham meet ups plus lots of other things to help raise awareness of womb cancer. Over the years there have been lots of women who have helped out and done similar things – all in the name of womb cancer awareness.
For a small organisation we have managed to do an awful lot of awareness raising and I say THANK YOU to each and every one of you that has helped.
Last September’s campaign in 2020 was our 10th one – a little smaller than in the past due to covid and the fact that everything was online and there were no “real world” events that could happen.
This year will also be different and this is why I am finally writing this blog post. I say finally because I have been putting it off for months but over the past week I’ve been asked twice what WCSUK is planning to do for the September awareness campaign.
As many of you may know I started WCSUK back in April 2011 and ever since then we have taken September as womb cancer awareness month, following on from our US Peach Sisters who we formed a mutual bond with in the early days. In fact, many of our original WCSUK peach sisters “met” via a US FB group and that’s where I got the idea to start one of our own.
What started out as an online support group quickly grew into a support & awareness organisation as it became apparent that many of the women had never heard of womb cancer prior to their diagnosis, just like me back in Dec 2009 so we decided to try and change things and ever since we have worked tirelessly, not just in September every year but day in & day out to raise awareness & #GiveWombCancerAVoice.
Over the intervening years my own health has deteriorated due to side effects of my own cancer diagnosis and the subsequent treatment and last October 2020 I ended up having a small heart attack and being airlifted to hospital where I spent 2 weeks and then a week after coming home I had a mini stroke.
So, that was finally my wake up call. I need to start listening to my body (and my husband)
It has been hard but I have taken the decision to step back slightly (not completely) from WCSUK. The organisation will not be folding, it will still be here to offer support to anyone who has been diagnosed with womb cancer. The private support group will still be there for those who want/need it and I will still be sending out the info packs to anyone who is newly diagnosed & requests one.
But I will no longer be spending hours online looking for info to share or working my butt off to raise awareness on social media, I can’t physically do it anymore, let alone mentally or psychologically.
This is a hard decision for me to take and as I said earlier truth be told I should have done it months ago but I didn’t know how to do it without feeling like I was letting people down.
However, now that we have Peaches Womb Cancer Trust, the first dedicated womb cancer charity in the UK I feel easier being able to step back. I know that the awareness will continue, especially as there are other groups around raising awareness now too. Back in 2011 there wasn’t as far as I was aware. There are of course gynae cancer organisations & charities but until Peaches began last September there was no dedicated womb cancer charity. The fact that they are an all female led charity headed by the wonderful Prof. Emma Crosbie makes it so much better.
So I can step back knowing that womb cancer will continue to be talked about & researched and that the awareness will continue.
I have always said that Womb Cancer Support UK was never about me – it’s about all the Peach Sisters that find us, often in their darkest hours after just being diagnosed. It’s about those who find support in our private FB group that helps them as they journey through treatment, recovery and beyond. It’s also about those Peach Sisters we have lost along the way, some of whom I have had the pleasure to meet, others I only knew online but each and everyone one of them was special and will always be remembered.
So before I start crying (again) Thank you to each and every-one who has been part of WCSUK for the past 10 ½ years. As I said, we’re not disappearing just stepping back into the shadows. We can still be reached via all our social media & our website.

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Pelvic Radiation Disease

16/5/2021

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Pelvic radiation disease, or PRD is a term that is used to describe a variety of symptoms that can arise after radiotherapy treatments to the pelvis as a result of various cancers such as cervical, womb & prostate.
The radiotherapy targets the affected area but sadly sometimes it also damages healthy cells. The damage can affect everyone differently and depends on the type of cancer and how much treatment each patient has.
Symptoms can start during treatment itself or sometimes it can start after treatment has ended. They also range from mild side effects to totally debilitating ones.
The symptoms, if severe can impact your quality of life dramatically. Changes in bowel habits, urinary problems, bloating, faecal incontinence, constipation - they are all possible side effects. The good news is they can often be treated or controlled to some extent by a change in diet and other lifestyle changes and also medication.
According to The Pelvic Radiation Disease Association, around 90% of patients who have treatment to the abdomen or pelvis for cancer get some bowel upset during treatment but 50% develop gastro-intestinal symptoms which affect their quality of life and range from minor to major issues.

I have lived with PRD for 11 years now since I had my treatment for womb cancer. The bowel issues started on day 3 of the external radiotherapy and it's been ongoing ever since. As a vegetarian for over 30 years I eat a high fibre diet so have had to adjust that considerably; due to lots of trial and error I now know what foods make the issue worse so can eliminate them from my diet.
However, my issues are compounded somewhat by the fact that as well as the PRD I also have an epi-gastric hernia that they are reluctant to repair due to the PRD. So I swing between bouts of faecal incontinence & severe constipation - often within the same day. Also, I was recently diagnosed with type 2 diabetes which has meant that I have had to change my diet yet again and after a few years of relative stability with my bowels I am back to having several bouts of really bad diarrhoea every week, which is no fun at all and therefore my quality of life is zero.
It's getting to the point where I don't want to eat because I dread the consequences. Because of my other health issues I have limited mobility so rarely make it to the loo in time which is not only embarrassing but tiring. The medication I was put on for the diabetes made the issue worse so I came off that and am reluctant to take any medication that lists diarrhoea as a side effect!!
I've come to the conclusion that most people don't realise the debilitating affect that PRD can have - lets face it anything related to toilet habits or bowel issues is always treated as a joke.
I don't like talking about my issues, especially when its to a complete stranger on the end of the phone when I recently had my PIP re-assessment but I do so to raise awareness and end the stigma.
If you think you might be affected or want more info then check out The Pelvic Radiation Disease Association

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Menopause Matters.

5/5/2021

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I went into surgical menopause at the age of 46½ after my hysterectomy that I had due to womb cancer. That was in January 2010. Call me naïve but I never for one moment realised that I would be plunged into menopause; maybe it was because I so focussed on the cancer and just didn’t think of anything else.
I was initially told they were 99.9% sure they had got all the cancer & I wouldn’t need further treatment but when the oncologist reviewed my notes he decided I needed chemotherapy and then external radiotherapy. That lasted until mid July, the week before my 47th Birthday!

It was a week later that I experienced my first hot flush and boy was it a big one. I think the treatment may well have been masking the menopause effects as I had a tough time with the chemotherapy especially.
I spoke to my gynaecologist about it; more about the long term effects rather than the hot flushes as both my Mom and my Aunt, her elder sister had osteoporosis and I was concerned about being diagnosed with it too. He told me not to worry about it; his reasoning was that because I had been big all my adult life and not yo-yo dieted I had technically been doing weight bearing exercises. When I first mentioned it to him I only knew about my Aunt having osteoporosis, I only learnt about my Mom having been diagnosed a few weeks later so mentioned it to him a gain at the next appointment as I was even more concerned knowing they had both been diagnosed but again he was adamant that there was nothing to worry about.
I had also been told that I was unable to have HRT because my cancer had been oestrogen receptive but I was not given any further advice by either him or my GP. When I went to see my GP and spoke about menopause issues I was told that all women go through it and I should just “learn to live with it”. She was a female GP too!!!

Well, I’m now 11 years on from going into surgical menopause and although I no longer have hot flushes I am convinced that the medical issues I now have are as a result of not getting proper menopause care. The list of health issues just keeps getting longer. I was hospitalised in Oct 2020 with heart problems; had a mini stroke & was diagnosed with diabetes. I suffer with insomnia, terrible fatigue, memory & concentration issues; cognitive issues as well as lymhoedema; underactive thyroid; pelvic radiation disease; an epi-gastric hernia that they won’t repair because of the bowel issues the list goes on. Add onto all that the effects of self isolating for the past 12 months due to covid and I am now housebound and virtually reliant on my husband (who has his own health problems) to care for me.

Running Womb Cancer Support UK has made me more than aware that there are many women who are not getting proper menopause support. Like me, they are being denied HRT and not being given any other alternative help other than anti-depressants which are not the answer.
Over the past few years I have searched for information, not only for myself but that I can pass on to the many other women who are struggling.
Diane Danzebrink, who runs Menopause Support also went into surgical menopause after a hysterectomy. She has been a wonderful source of information & support with her website and FB page & closed support group. She is passionate about the need to change the way menopause is seen and make sure that women get the proper help & support they need.
Just because menopause is something that is inevitable and will happen to most women at some point in their life does not mean we should just accept our lot and put up with it. It can have major health implications if not treated properly and in many cases can lead to mental health issues and even suicide.

We deserve better which is why I keep sharing the petition that Diane set up calling for better menopause support from GP’s, in the workplace and in education. Please if you haven’t already signed then do so. If not for yourself, then your daughter, sister, mother, best friend etc. It’s not just a petition for women either because this issue affects men too – they have mothers, sisters, daughter, partners.
This affects everyone in one way or another so please sign and share across all your social media platforms – this is important.
https://www.change.org/p/rt-hon-elizabeth-truss-mp-make-menopause-matter-in-healthcare-the-workplace-and-education-makemenopausematter
.

image courtesy of Menopause Matters

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Happy Birthday to Us.

11/4/2021

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Well, today’s the day. We finally hit double figures!!! WCSUK is 10 years old!!
What started out as a simple FB page offering support to other women who, like me, had been diagnosed with womb cancer has grown into a national not for profit organisation with over 4,000 followers on FB; a well-used website; a great social media presence and over 20,000 womb cancer awareness leaflets distributed around the UK. All done from my kitchen table in a tiny flat on Isle of Bute, off west coast of Scotland.

Of course, as I’ve always said, WCSUK is not all about me – it’s about the many, many women who come to us looking for support, information, advice; those who want to help raise awareness of a cancer that, like me, they had never heard of before they were diagnosed.
We have a small but very dedicated group of ladies, some of whom have been part of WCSUK for many years who help us raise awareness by holding awareness events or putting leaflets in their local area. Some have done radio interviews or articles in their local paper. Some have written guest blog posts for our website – nearly 60 #PeachSisters have shared their story to help raise awareness.
Every bit helps. When we started out all those years ago, our aim was to offer support to those who had been diagnosed but it soon became very apparent that there was a lack of awareness of what was, and still is, the most common gynaecological cancer. So we became a support & awareness organisation. Both equally as important as each other.

When I started this back in 2011 I never imagined that I would still be doing it 10 years on. At one time, in the early days I had wanted to make WCVSUK into a charity but that wasn’t possible due to various reasons. Over the past few years my own health has deteriorated significantly so I am thrilled that back in September 2020 Peaches Womb Cancer Trust, a dedicated womb cancer charity sprang into life. It means that WCSUK can take a step back and concentrate on what we were originally set up to do; offer online support to those women who have been diagnosed with womb cancer.
Of course, we fully support Peaches Trust in what they do and look forward to them growing and helping raise yet more awareness & also doing research in womb cancer, something that has sadly been lacking over many years.

Right, time for some Birthday cake.

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My womb cancer story - by Sam Rose

8/11/2020

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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.

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Introducing Peaches Womb Cancer Trust

30/9/2020

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It is a pleasure to have been asked by Kaz, to write a blog post for the WCSUK website. Please allow us to introduce ourselves, we are Peaches Womb Cancer Trust, the first UK charity dedicated to research, awareness and improving the lives of those affected by womb cancer.

Earlier this year a group of researchers within the womb cancer team at St Mary’s Hospital, Manchester had an idea to start up a charity dedicated to womb (endometrial) cancer following some incredibly generous donations offered to Professor Emma Crosbie to further her research. Unfortunately, these donations could not be accepted directly, but instead were kindly offered to the University of Manchester with whom Professor Crosbie has her chair. The donors were disappointed that the funds could not be protected specifically for womb cancer research. We realised that there was a significant gap in the charitable sector for a charity dedicated to womb cancer…and so Peaches Womb Cancer Trust was created.

The team at Peaches Womb Cancer Trust consists of Dr Chloe Barr, Dr Helen Clarke, Professor Crosbie, Dr Eleanor Jones, Dr Helena O’Flynn and Anne Lowry. We are a dedicated team of Gynaecologists, a General Practitioner and a Gynaecological Oncology Clinical Nurse Specialist. In addition, we also have a non-medical trustee, Rosemary Pike, who is a retired solicitor. On the whole, we are active translational researchers and healthcare professionals – this means our clinical research directly impacts patient care.

Why have we set up Peaches Womb Cancer Trust?

For such a common disease, there is a distinct lack of public awareness of womb cancer and many people have never heard of it. There is also comparatively little research dedicated to womb cancer. One of our main aims is to raise funds to further research into womb cancer, principally for the research undertaken within the womb cancer team at the University of Manchester. This research group, led by Professor Crosbie focuses its efforts on the prevention, early detection and treatment of womb cancer. In doing so, it also supports the careers of budding gynaecological oncologists and researchers.

The research team has several ongoing studies looking into the use of non-invasive tests for the early diagnosis of womb cancer, with the aim that one day these might be able to be used within GP surgeries. They are also developing womb cancer risk prediction tools that will identify those at higher risk of womb cancer who might benefit from prevention strategies. Over the last few years, there have been an increasing number of younger women diagnosed with womb cancer, and the womb cancer research team are looking into more conservative treatments so that these women might keep their womb and have children in the future. Last year, as a direct result of their extensive research into the inherited condition Lynch syndrome, which increases the risk of womb and bowel cancer, changes have been made in national guidelines regarding screening for Lynch syndrome in women diagnosed with womb cancer, having a huge impact on their future health and the health of their families.

Then Covid-19 happened…

When the Covid-19 pandemic hit, many of our research team were called back into full-time clinical work. Because of this, both our research and our progress with setting up Peaches Womb Cancer Trust temporarily stalled. Dr Clarke had previously volunteered to run the Manchester 10K in May for Peaches Womb Cancer Trust, but this was cancelled owing to the pandemic. However, in an attempt to protect both mental and physical health during lockdown, Dr Clarke still ran her own version of the Manchester 10K, albeit around the canal tow paths and roads of Cheshire instead. A JustGiving page for the run attracted huge support and she raised a staggering £1155! This gave Peaches Womb Cancer Trust the vital initial funds required to set up a website and email address and to get ready for our official launch in September 2020.

The team are all now back into our clinical research roles and are busily working to build the profile of Peaches Womb Cancer Trust. We have decided to continue with our planned launch during September 2020, which is gynaecological cancer awareness month. Due to Covid-19 the launch will have to be virtual, but this has not dampened our enthusiasm

We were absolutely delighted when Womb Cancer Support UK reached out to us, kindly offering to donate funds raised to our charity. This will be used in awareness and patient support projects and will enable us to begin our work in earnest. We were already aware of the amazing work that WCSUK does to provide a vital support service to patients and we hope to have a long and prosperous relationship with WCSUK. We are a new charity with visions to expand our role and purpose as we grow over the coming years and your support at this early stage of our journey is so greatly appreciated.

We thank you so much for your interest in and support of Peaches Womb Cancer Trust. We look forward to meeting many of you over the coming years at one of our many anticipated events.

With very best wishes and thanks from all of us at Team Peaches!

Peaches Womb Cancer Trust are on social media at these links
Facebook
Twitter
Instagram
Email : admin@peachestrust.org.uk
Website - peachestrust.org

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My womb cancer story by R.K

26/9/2020

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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 .

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My story by L.D

23/9/2020

1 Comment

My journey started in 2016 when I had a very heavy bleed the day after we moved house. I was stubborn and left it till two days later due to it being the weekend. I saw a nurse practitioner who arranged an ultrasound scan and bloods. I was anaemic but no problems with the scan. She suggested that I use black cohosh or another alternative to HRT which I tried which didn't help.

Skip to the next year when I had a very watery discharge and seen as I was post menopausal I went to my GP who sent me for another scan and did bloods. A scan appointment, a painful hystroscopy and then a few appointments later I ended up with a diagnosis of both uterine and ovarian cancer which wasn't a surprise as mum had ovarian cancer before she died.
I ended up in James Cook University hospital having a hysterectomy in July 2017, key hole thank goodness. I was waiting for a nurse to help me out of bed and it took so long I did it myself with help from my husband. I slept in that chair overnight as it was more comfortable than the bed. Luckily I was discharged thr next day.
Then came chemo, hair loss, feeling sick and meeting some lovely people in the unit. I had radiotherapy and brachytherapy afterwards. This made me so tired.

I went back to work in June 2018 with 3 monthly oncology appointments with a consultant who is, once you get to know him, a helpful but can be quick asking his questions and doesn't tell you a lot unless you have a list of questions which is his quirkiness. A short while after I went back to work I went for a post nearer to home which I got and it's a great place to be. I told them at the start that I had had treatment for cancer and they were great with me. So I started on the 1st November 2018.

Roll into 2019 where I mentioned to the oncologist I was having issues with my abdomen with more pain than usual. A scan later showed spread to my abdomen so more chemo but a different kind. The spots as he called them reduced slightly but not enough to be in the running for chemo tablets. During this bout of chemo I was anaemic and had 3 units of blood.
So now what? Hormone tablets which, when I returned to work caused me breathlessness and when I was admitted to hospital a pulmonary embolism which they treated with injections for a couple of days. I had a scan the day after I went in which showed no PE but my logic was that the 2 heparin injections they had given me the evening before had got rid of it. I gradually became less breathless and was less tired at work.

Now 2020 and my adventure with the NHS during a pandemic. I had a feeling of pressure in my pelvic area. My appointment was cancelled in early April but it was getting worse so I pushed for an appointment and was quickly scanned afterwards. My cancer was now in my pelvis and abdomen. I am currently having chemo and have got hair loss but hardly any nausea thank goodness. I get tired very easily and get dizzy spells at the moment which scares me at times. I scare my lovely husband at times when I have dizzy spells and he worries about me which is only natural. I had to go to the hospital during the nightime before I started chemo and was catheterised during to me not being able to pee properly after an infection. Thank goodness that it was only in for 3 weeks. I went to see my manager at work who was great with me as she knew what had happened the year before. I was so emotional talking to her and her deputy but I couldn't have a more understanding workplace. I go in now and again to see them which is good for keeping me in the loop.

I now have less pressure in my pelvis and feel that I did the right thing pushing for an appointment as an appointment came through about a month ago which could have been that the cancer had spread more.
I am feeling positive about the outcome of the treatment atm but am anxious about my scan results which will be discussed at an appointment at James Cook on the 4th of September. We'll see what my oncologist says and go from there. Will it be worth all of the side effects I don't know but I try to stay as positive as I can do.
Thanks for reading the rambling of a 55 year old who does rabbit on a bit.

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When September becomes June.

It's our 12th Birthday today!!

The good, the bad and the frustration: My journey so far by CB

My womb cancer story by KU

The crushing womb cancer diagnosis from a family perspective by DH

My experience of endometrial cancer and grief by PK

My womb cancer story by TB

Going, but not gone.

Pelvic Radiation Disease

Menopause Matters.

Happy Birthday to Us.

My womb cancer story - by Sam Rose

Introducing Peaches Womb Cancer Trust

My womb cancer story by R.K

My story by L.D

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