Continuing on with our guest blogs for September's awareness campaign, here is another survivor's story!
Being in our 60s, “romantic interludes” between my husband and I are for high days and holidays! It was two days after one such occasion, his birthday, that I started bleeding. My last period had been about 7 years previously and the bleeding I had reminded me of either the first day or last couple of days of a period. Not too heavy but needing a pad. About 9 years previously I had had a polyp removed from my cervix which had caused heavy bleeding and I just thought it must be another of these.
My GP examined me and couldn’t see anything. She did not think there was anything to be concerned about but said if I wanted she could refer me to the hospital for a thorough examination. When I went I saw the Macmillan CNS Gynaecology/Oncology who examined me and took biopsies. She said there was thickening and my cervix was “spongy”. Without her saying it I got the strong impression that she thought there was something seriously wrong, especially when she asked if I had anyone with me. I hadn’t.
When I went back for the results and saw the Consultant Gynaecologist I had my daughter with me while my husband waited in the Waiting Room. The Senior Macmillan Cancer Nurse was there and there was a box of tissues on the table. I was told the results were bad, I had endometrial cancer and possible cervical cancer. It was Carcinosarcoma, a rare and aggressive type. My daughter had hoped I was being pessimistic and had not expected this. She was extremely upset as was my husband. I was quite calm as I had expected bad news.
I had my operation and was put in a Gynaecological/Oncology Ward amongst other ladies who were in for non cancer hysterectomies, prolapses, etc. I was very ill after the operation and they couldn’t figure out why my temperature was so high and why I was so sick. For four days and nights I had doctors coming to me for blood samples, I had “umpteen” drips of various things and the worst thing was I overheard other patients talking about how difficult it was to sleep with the doctors coming to me throughout the night.
I had combined chemotherapy for one dose but it made me very ill and my liver was being affected. They cut the drug out that can cause liver damage and gave me another single session. Again I was very ill so they decided to stop it. They said my body could not cope with the chemotherapy.
The upside is they are pretty confident they got it all after removing my uterus, cervix and lymph nodes and in a way my husband saved my life.
So ladies do not ignore any unusual bleeding.
Wednesday, 19 September 2012
Sunday, 16 September 2012
My Story - by JH
Continuing on with our guest blogs for September's awareness campaign, here is another survivor's story!
I've never liked fair ground rides; I remember once screaming so loud on a ferris wheel my mum had to get it stopped for me; but in May 2011 I started on a rollercoaster ride that I couldn't stop, I just had to hang on for the ride.
My journey started by a simple trip to the Docs, an oddity for me, I very rarely went. I had found a small lump on my vaginal wall, quite painful. I thought it was a cyst, which it was, but my GP noticed something; she said I looked really pale, anaemic in fact and ran some blood tests.
I got an urgent call the next day, they wanted to see me straight away. I was borderline needing a transfusion I was so anaemic. My GP asked me about my periods. I had always had really heavy long periods, from being 18, they had got worse over the last three years, but I had just dealt with them.
My GP was fab and said it needed looking into. She referred me but I heard nothing. In the meantime she fitted me with a mirena coil. This lasted a week, I had a bad reaction to it and hemorrhaged, so my GP removed it and was horrified by the amount of blood and clots. She said I needed to see a consultant urgently; things were not right. I was put on meds to slow the bleeding, but it didn't stop, this was in October.
She got on to the hospital, they finally sent me an appointment for November.
November came I was still bleeding, I saw a young registrar who took biopsies and examined me, did some scans, didn't say much, just said I needed more tests!
December came, I was given a hysteroscopy, it was agonising, I was still bleeding, no-one really answered my questions.
By now I was feeling quite ill; my GP was seeing me every week, checking my blood levels and giving me lots of support, hounding the hospital for answers and results; she felt now my only option was a hysterectomy.
January came; the hospital said all biopsies were negative. I had an enlarged twisted tilted womb, with lots of cysts and fibroids; however they wanted to try an ablative first, I said I felt a hysterectomy would be better, but the consultant said they had to at least try, so I put my faith in them.
January 25th the ablative failed; my womb was too enlarged and twisted.
By now I was in agony. I spent a week.in hospital after the ablative, but no-one seemed to listen; they just gave me pain meds and more meds to slow the bleeding.
My GP was outraged; she wrote to the hospital to speed up my appointment, I was by now unable to work,
The hospital finally saw me in March.
The consultants first words were "I hear you think you need a hysterectomy", I just broke down; all my agony, pain, frustration just flew out. I think I even screamed at him; another consultant came in, "we will see what we can do" she said. I walked out feeling like a mad women who was faking it and putting on.
I rang my GP in floods of tears; she reassured me she would hound them again.
The letter came a week later; I had to see another consultant the following week.
Progress I thought! The appointment was brill, I could have the op in May; a long wait but I could manage, even if by now I was on 45 tablets a day and still off work.
The day came; they wanted to try it by Lap, I put my faith in them. I came round on HDU, the operation had took 7 hours, I ran into breathing difficulties as my womb was so hard to remove, they had finished up leaving my ovaries and cervix, no biggy I thought at least no more bleeding, after a long year the ride was over.
I came home 4 days later but I still felt so ill, just part of it I thought.
On 30th May 2012 at 1pm the hospital rang; could I come in tomorrow /I knew then it had to be bad news. I wanted the roller coaster to stop, but the driver wasn't listening!
I didn't sleep; my Hubby and I arrived at the hospital at 10:00 am; finally at 10:45am we were taken to see a consultant; the same one who asked me why I wanted a hysterectomy! She dropped the bomb shell; I just wanted to scream at her. I was being transferred to Sheffield for my care; Chesterfield didn't deal with cancer! All I could think was, thank god for that!
Sheffield rang me the next day; "could I be there by 4:00pm"; god its happening fast, I thought, but good!
Mr Gillespie was brilliant; he talked through what had been found but said it was hard to know exactly as my womb had been shredded! "What??" I asked, I didn't know, Chesterfield hadn't told me! He was appalled; He said my treatment had been dealt with wrongly from the start, but we had to move on.
I was booked in for a open abdominal BSO and cervical stumpectomy, plus abdominal washings on the 21st of June. I saw another consultant Miss Kew, who would do the op; a consultant anaesthetist Miss Bland, because of the issues I'd had before, and my CNS Angela, they were all amazing. For the first time I felt listened to, I felt confident in them.
My GP rang me when I got home, she was stunned with my diagnosis but she too was happy I was at Sheffield.
Op day came; the nurses and doctors were wonderful, so attentive. I had a melt down, think it finally hit me.
I finished up on intensive care but Miss Bland never left my side till I was stable. The op went well but they couldn't get my pain under control, or my blood pressure.
A week later I was home, sore and tired, but I didn't feel ill like last time.
On the 2nd of July, my hubbies 50th birthday, we were given the results. My pelvis was clear, no cancer was found anywhere else; however because of the uterus being shredded they were not sure yet if I needed radiotherapy. Never the less I was elated!
The hospital called the next day, they felt to be sure I should have Brachytherapy. They knew my cancer was 1b but thought it likely to be a grade 2 but because of the mess Chesterfield had made they couldn't guarantee it.
On the 4th of August I went into Weston Park. Again all staff were excellent. I have to say it wasn't the best experience I have had, it was a hard 3 days of treatment but the staff got me through.
So here I am, hopefully at the end of my rollercoaster journey. I hung on tight, gritted my teeth; through the loops, bumps, and terrifying moments, I can finally slow it down. My GP; Sheffield team; my family and friends got me through. I survived. I am still here, still smiling and that is all that matters!
I've never liked fair ground rides; I remember once screaming so loud on a ferris wheel my mum had to get it stopped for me; but in May 2011 I started on a rollercoaster ride that I couldn't stop, I just had to hang on for the ride.
My journey started by a simple trip to the Docs, an oddity for me, I very rarely went. I had found a small lump on my vaginal wall, quite painful. I thought it was a cyst, which it was, but my GP noticed something; she said I looked really pale, anaemic in fact and ran some blood tests.
I got an urgent call the next day, they wanted to see me straight away. I was borderline needing a transfusion I was so anaemic. My GP asked me about my periods. I had always had really heavy long periods, from being 18, they had got worse over the last three years, but I had just dealt with them.
My GP was fab and said it needed looking into. She referred me but I heard nothing. In the meantime she fitted me with a mirena coil. This lasted a week, I had a bad reaction to it and hemorrhaged, so my GP removed it and was horrified by the amount of blood and clots. She said I needed to see a consultant urgently; things were not right. I was put on meds to slow the bleeding, but it didn't stop, this was in October.
She got on to the hospital, they finally sent me an appointment for November.
November came I was still bleeding, I saw a young registrar who took biopsies and examined me, did some scans, didn't say much, just said I needed more tests!
December came, I was given a hysteroscopy, it was agonising, I was still bleeding, no-one really answered my questions.
By now I was feeling quite ill; my GP was seeing me every week, checking my blood levels and giving me lots of support, hounding the hospital for answers and results; she felt now my only option was a hysterectomy.
January came; the hospital said all biopsies were negative. I had an enlarged twisted tilted womb, with lots of cysts and fibroids; however they wanted to try an ablative first, I said I felt a hysterectomy would be better, but the consultant said they had to at least try, so I put my faith in them.
January 25th the ablative failed; my womb was too enlarged and twisted.
By now I was in agony. I spent a week.in hospital after the ablative, but no-one seemed to listen; they just gave me pain meds and more meds to slow the bleeding.
My GP was outraged; she wrote to the hospital to speed up my appointment, I was by now unable to work,
The hospital finally saw me in March.
The consultants first words were "I hear you think you need a hysterectomy", I just broke down; all my agony, pain, frustration just flew out. I think I even screamed at him; another consultant came in, "we will see what we can do" she said. I walked out feeling like a mad women who was faking it and putting on.
I rang my GP in floods of tears; she reassured me she would hound them again.
The letter came a week later; I had to see another consultant the following week.
Progress I thought! The appointment was brill, I could have the op in May; a long wait but I could manage, even if by now I was on 45 tablets a day and still off work.
The day came; they wanted to try it by Lap, I put my faith in them. I came round on HDU, the operation had took 7 hours, I ran into breathing difficulties as my womb was so hard to remove, they had finished up leaving my ovaries and cervix, no biggy I thought at least no more bleeding, after a long year the ride was over.
I came home 4 days later but I still felt so ill, just part of it I thought.
On 30th May 2012 at 1pm the hospital rang; could I come in tomorrow /I knew then it had to be bad news. I wanted the roller coaster to stop, but the driver wasn't listening!
I didn't sleep; my Hubby and I arrived at the hospital at 10:00 am; finally at 10:45am we were taken to see a consultant; the same one who asked me why I wanted a hysterectomy! She dropped the bomb shell; I just wanted to scream at her. I was being transferred to Sheffield for my care; Chesterfield didn't deal with cancer! All I could think was, thank god for that!
Sheffield rang me the next day; "could I be there by 4:00pm"; god its happening fast, I thought, but good!
Mr Gillespie was brilliant; he talked through what had been found but said it was hard to know exactly as my womb had been shredded! "What??" I asked, I didn't know, Chesterfield hadn't told me! He was appalled; He said my treatment had been dealt with wrongly from the start, but we had to move on.
I was booked in for a open abdominal BSO and cervical stumpectomy, plus abdominal washings on the 21st of June. I saw another consultant Miss Kew, who would do the op; a consultant anaesthetist Miss Bland, because of the issues I'd had before, and my CNS Angela, they were all amazing. For the first time I felt listened to, I felt confident in them.
My GP rang me when I got home, she was stunned with my diagnosis but she too was happy I was at Sheffield.
Op day came; the nurses and doctors were wonderful, so attentive. I had a melt down, think it finally hit me.
I finished up on intensive care but Miss Bland never left my side till I was stable. The op went well but they couldn't get my pain under control, or my blood pressure.
A week later I was home, sore and tired, but I didn't feel ill like last time.
On the 2nd of July, my hubbies 50th birthday, we were given the results. My pelvis was clear, no cancer was found anywhere else; however because of the uterus being shredded they were not sure yet if I needed radiotherapy. Never the less I was elated!
The hospital called the next day, they felt to be sure I should have Brachytherapy. They knew my cancer was 1b but thought it likely to be a grade 2 but because of the mess Chesterfield had made they couldn't guarantee it.
On the 4th of August I went into Weston Park. Again all staff were excellent. I have to say it wasn't the best experience I have had, it was a hard 3 days of treatment but the staff got me through.
So here I am, hopefully at the end of my rollercoaster journey. I hung on tight, gritted my teeth; through the loops, bumps, and terrifying moments, I can finally slow it down. My GP; Sheffield team; my family and friends got me through. I survived. I am still here, still smiling and that is all that matters!
Thursday, 13 September 2012
My Story - by M.S
Here is another guest blog as part of Womb Cancer Awareness month. It has been reproduced from an existing article.
September is Uterine Awareness Month...if you are able to read this, then you know somebody who is currently fighting Stage 4 of this disease. This disease is very curable if found early, but there are no real tests to find the disease unless you speak honestly to your OB/GYN about any female problems you are having.
In my case, I had a pap smear and full pelvic exam done last October and passed it with flying colors. I was having problems with strong bleeding and was given a pill to control the hormones. By January, I was so anemic I needed weekly iron infusions, and when I went to a follow up visit with my OB/GYN in February, I was bleeding so strongly in the office that they had no choice but to do an ultrasound and schedule me for a D&C. Even after the D&C, the doctor said all is well since I am cleaned out now..it was a week later that the tests came back...Uterine Cancer.
The head of the OB/GYN office, who gave me the test results, asked me why his doctor even did an ultrasound and D&C on me because at my age, abnormal bleeding is treated with hormones, but also said that thinking outside the box in this case was the perfect thing to do. He also told me that uterine cancer is the cancer to have if you have cancer (two weeks later I learned that my kind is definitely not the kind you want to have)
Five days after my diagnosis, I met Dr. DePasquale, whose first question was "Why do you have this cancer? You don't have the age or the body for it" Both of which are usually a compliment (He meant I was too young and not big enough lol)..but once he checked my uterine, he asked if somebody was with me..to get my mother and to talk. The talk was one of the hardest things I went thru because Dr. D did not give me a good long-term outlook based on the size of my Uterine (which six months earlier during a pelvic exam was called being a normal size).
I had surgery the week later and during the surgery, Dr. D came out to see my mother to tell her the cancer was all over the pelvis and he had to cut me open to make sure nothing spread to the abdomen. I will be forever grateful to the women and men who had come to the hospital to be with Mum during my surgery. Not sure she would have made it without your support. When he came out after the surgery, the news was better...he was able to remove all cancer cells he saw (and based on reports he took his time checking out my pelvis and abdomen to make sure nothing is overlooked)
A week later we received the pathology reports..and the news was mixed. Nothing was in the bladder and bowels, but two "small" lymph nodes were affected. And the cancer was puzzling to the doctors because it is a very rare and aggressive form for which no real clinical research exits. We went with the "normal" treatment plan of chemo and radiation..and started with Chemo four weeks after my total hysterectomy. Time is of essence and Dr. D. said I was young enough to stand it.
Today, I am two weeks away from my last Chemo session...and the outlook seems to be better than we dared to hope in March. Due to an infection six weeks after the surgery, Dr. D ordered a full abdomen and GI track ct scan which came back clear (I told him he took the opportunity to do a full scan which is not normal for uterine cancer..and the doctor who barely smiles...just smiled at me). My CA 125 levels are as low as they probably will ever be (it's one of the blood tests to determine how successful treatment is)..and Dr. D who told me in March my outlook is bleak, told me in August that he thinks there is not much cancer if any cancer left in my blood.
I have decided to tell my story because uterine cancer does kill..but is detectable..if you as the patient make sure your doctor takes your concerns seriously and does some tests..even if he/she has to think outside the box. It occurs to "young" women pre-menopause as well...not just post-menopause. It's scary to be told you don't have much hope...but that's when it is so comforting when the first thing you "hear" during your prayer is "I am the ultimate healer...don't looks at statistics".
The last six months have been a rollercoaster and this journey is not over because we are still fighting..and recurrence is a very distinct possibility...but in all of this I am very thankful for gaining this closer walk with the Lord (the ultimate healer), my friends, people telling me their own cancer stories and showing me cancer is not a death sentence, my family (be it thru our blood or the blood of Christ) and doctors, who have a picture of Christ leading the surgeon's hand during surgery, hanging in their office. BTW..the above is no particular order (after giving my first thanks to Christ)..I am equally thankful for all of you.
Again, September is uterine cancer awareness month...why not schedule a pelvic exam for this month to make sure you will not be part of that statistic? And if you are...feel free to reach out to me...I will pray, cry, talk or do whatever you need me to do with you :)
September is Uterine Awareness Month...if you are able to read this, then you know somebody who is currently fighting Stage 4 of this disease. This disease is very curable if found early, but there are no real tests to find the disease unless you speak honestly to your OB/GYN about any female problems you are having.
In my case, I had a pap smear and full pelvic exam done last October and passed it with flying colors. I was having problems with strong bleeding and was given a pill to control the hormones. By January, I was so anemic I needed weekly iron infusions, and when I went to a follow up visit with my OB/GYN in February, I was bleeding so strongly in the office that they had no choice but to do an ultrasound and schedule me for a D&C. Even after the D&C, the doctor said all is well since I am cleaned out now..it was a week later that the tests came back...Uterine Cancer.
The head of the OB/GYN office, who gave me the test results, asked me why his doctor even did an ultrasound and D&C on me because at my age, abnormal bleeding is treated with hormones, but also said that thinking outside the box in this case was the perfect thing to do. He also told me that uterine cancer is the cancer to have if you have cancer (two weeks later I learned that my kind is definitely not the kind you want to have)
Five days after my diagnosis, I met Dr. DePasquale, whose first question was "Why do you have this cancer? You don't have the age or the body for it" Both of which are usually a compliment (He meant I was too young and not big enough lol)..but once he checked my uterine, he asked if somebody was with me..to get my mother and to talk. The talk was one of the hardest things I went thru because Dr. D did not give me a good long-term outlook based on the size of my Uterine (which six months earlier during a pelvic exam was called being a normal size).
I had surgery the week later and during the surgery, Dr. D came out to see my mother to tell her the cancer was all over the pelvis and he had to cut me open to make sure nothing spread to the abdomen. I will be forever grateful to the women and men who had come to the hospital to be with Mum during my surgery. Not sure she would have made it without your support. When he came out after the surgery, the news was better...he was able to remove all cancer cells he saw (and based on reports he took his time checking out my pelvis and abdomen to make sure nothing is overlooked)
A week later we received the pathology reports..and the news was mixed. Nothing was in the bladder and bowels, but two "small" lymph nodes were affected. And the cancer was puzzling to the doctors because it is a very rare and aggressive form for which no real clinical research exits. We went with the "normal" treatment plan of chemo and radiation..and started with Chemo four weeks after my total hysterectomy. Time is of essence and Dr. D. said I was young enough to stand it.
Today, I am two weeks away from my last Chemo session...and the outlook seems to be better than we dared to hope in March. Due to an infection six weeks after the surgery, Dr. D ordered a full abdomen and GI track ct scan which came back clear (I told him he took the opportunity to do a full scan which is not normal for uterine cancer..and the doctor who barely smiles...just smiled at me). My CA 125 levels are as low as they probably will ever be (it's one of the blood tests to determine how successful treatment is)..and Dr. D who told me in March my outlook is bleak, told me in August that he thinks there is not much cancer if any cancer left in my blood.
I have decided to tell my story because uterine cancer does kill..but is detectable..if you as the patient make sure your doctor takes your concerns seriously and does some tests..even if he/she has to think outside the box. It occurs to "young" women pre-menopause as well...not just post-menopause. It's scary to be told you don't have much hope...but that's when it is so comforting when the first thing you "hear" during your prayer is "I am the ultimate healer...don't looks at statistics".
The last six months have been a rollercoaster and this journey is not over because we are still fighting..and recurrence is a very distinct possibility...but in all of this I am very thankful for gaining this closer walk with the Lord (the ultimate healer), my friends, people telling me their own cancer stories and showing me cancer is not a death sentence, my family (be it thru our blood or the blood of Christ) and doctors, who have a picture of Christ leading the surgeon's hand during surgery, hanging in their office. BTW..the above is no particular order (after giving my first thanks to Christ)..I am equally thankful for all of you.
Again, September is uterine cancer awareness month...why not schedule a pelvic exam for this month to make sure you will not be part of that statistic? And if you are...feel free to reach out to me...I will pray, cry, talk or do whatever you need me to do with you :)
Saturday, 1 September 2012
This is me!
Today is Saturday 1st September 2012 - the first day of Womb Cancer Awareness Month.
Over the next month, we shall be featuring articles by various guest bloggers to help raise awareness of womb cancer.
Today, I want to share with you my story. This is my journey with womb cancer and how Womb Cancer Support UK came about.
I was diagnosed with womb cancer on 23rd Dec 2009. I had a hysterectomy, then chemo, then radiotherapy. My treatment ended in July 2010 - one week before my 47th Birthday!
To say I've been on a rollercoaster is an understatement and I`m still coming to terms with it all now, over two years later and truth is, my diagnosis came as a complete shock!
I was told that I had fibroids after an ultrasound scan picked them up however, a later MRI scan confirmed that it was cancer and my journey with womb cancer began!
To be honest, I`d had problems for years but never went to see a doctor! I was always scared that they`d find something serious – like cancer!! So I`d put up with things like very heavy bleeding, pain etc for over 30 years!!
Receiving the news was a complete blow and the fact that I received it over the phone (when I was in the house on my own) didn’t help!
Because my Consultant said he was 99.9% sure they could remove it all, I`d figured there was no need to worry my family about something that might not happen, so I decided not to tell anyone about ‘the cancer’ until after my hysterectomy (only my husband knew)
When the pathology results came back they showed there was a high probability cancer cells were still present, so I had to come clean and tell people! I live on a small island off the west coast of Scotland and rumours start quicker than the drop of a hat! So I decided to be completely open about having cancer so they didn’t have me dead and buried before I’d even started the treatment!
Telling my parents was very difficult. It was hard for them to come to terms with their eldest daughter having cancer – as they`d come from a generation where “cancer” meant death and explaining things was pretty difficult, especially as I was having problems finding accurate information about womb cancer!
I resorted to scouring the internet for information and devoured so much stuff that I felt like a walking library!
Time has passed and I still deal with various health issues: some as a result of severe anaemia that I`d had before the hysterectomy and some as a result of the treatment. I have been diagnosed with lymphoedema in both legs, and also an underactive thyroid; both as a result of the treatment. I also have bowels problems as a result of the radiotherapy.
However, life goes on!
I don’t dwell on what`s happened but now use my experience, to help other women, especially those with womb cancer!
I didn't want other people in a similar situation to experience the same loneliness I`d had when first diagnosed and in my seemingly never ending search for information and support, I came across an American Facebook group: My Fight against Uterine Cancer. This is where I met Debra!
We were bemoaning the fact that there didn’t appear to be any UK based womb cancer support groups around and Debra suggested I start one!
So I did!
20 minutes later, on the 11th April 2011, Womb Cancer Support UK made its first post on Facebook!
Debra helps me run the group, and we not only support each other, but raise awareness of womb cancer and support everyone in our group.
What started off as an online support page on Facebook for other women going through womb cancer, has now grown to not only include a private chat group, but a website, a blog, a twitter account, a petition calling for a dedicated womb cancer charity AND fundraising for a womb cancer research project!
I feel humbled by all the remarkable women in the group! They tell us they wouldn’t have been able to get through their own cancer ordeal, without WCSUK!
Doing something positive helps me… and if it helps others in even a small way then I'm happy!
Personally, it`s been a long 2 years and I’m still far from 100% but its good to see how WCSUK has grown and now encompasses awareness as well as support as its main aim.
Over the next month, we shall be featuring articles by various guest bloggers to help raise awareness of womb cancer.
Today, I want to share with you my story. This is my journey with womb cancer and how Womb Cancer Support UK came about.
I was diagnosed with womb cancer on 23rd Dec 2009. I had a hysterectomy, then chemo, then radiotherapy. My treatment ended in July 2010 - one week before my 47th Birthday!
To say I've been on a rollercoaster is an understatement and I`m still coming to terms with it all now, over two years later and truth is, my diagnosis came as a complete shock!
I was told that I had fibroids after an ultrasound scan picked them up however, a later MRI scan confirmed that it was cancer and my journey with womb cancer began!
To be honest, I`d had problems for years but never went to see a doctor! I was always scared that they`d find something serious – like cancer!! So I`d put up with things like very heavy bleeding, pain etc for over 30 years!!
Receiving the news was a complete blow and the fact that I received it over the phone (when I was in the house on my own) didn’t help!
Because my Consultant said he was 99.9% sure they could remove it all, I`d figured there was no need to worry my family about something that might not happen, so I decided not to tell anyone about ‘the cancer’ until after my hysterectomy (only my husband knew)
When the pathology results came back they showed there was a high probability cancer cells were still present, so I had to come clean and tell people! I live on a small island off the west coast of Scotland and rumours start quicker than the drop of a hat! So I decided to be completely open about having cancer so they didn’t have me dead and buried before I’d even started the treatment!
Telling my parents was very difficult. It was hard for them to come to terms with their eldest daughter having cancer – as they`d come from a generation where “cancer” meant death and explaining things was pretty difficult, especially as I was having problems finding accurate information about womb cancer!
I resorted to scouring the internet for information and devoured so much stuff that I felt like a walking library!
Time has passed and I still deal with various health issues: some as a result of severe anaemia that I`d had before the hysterectomy and some as a result of the treatment. I have been diagnosed with lymphoedema in both legs, and also an underactive thyroid; both as a result of the treatment. I also have bowels problems as a result of the radiotherapy.
However, life goes on!
I don’t dwell on what`s happened but now use my experience, to help other women, especially those with womb cancer!
I didn't want other people in a similar situation to experience the same loneliness I`d had when first diagnosed and in my seemingly never ending search for information and support, I came across an American Facebook group: My Fight against Uterine Cancer. This is where I met Debra!
We were bemoaning the fact that there didn’t appear to be any UK based womb cancer support groups around and Debra suggested I start one!
So I did!
20 minutes later, on the 11th April 2011, Womb Cancer Support UK made its first post on Facebook!
Debra helps me run the group, and we not only support each other, but raise awareness of womb cancer and support everyone in our group.
What started off as an online support page on Facebook for other women going through womb cancer, has now grown to not only include a private chat group, but a website, a blog, a twitter account, a petition calling for a dedicated womb cancer charity AND fundraising for a womb cancer research project!
I feel humbled by all the remarkable women in the group! They tell us they wouldn’t have been able to get through their own cancer ordeal, without WCSUK!
Doing something positive helps me… and if it helps others in even a small way then I'm happy!
Personally, it`s been a long 2 years and I’m still far from 100% but its good to see how WCSUK has grown and now encompasses awareness as well as support as its main aim.
Womb Cancer Support UK - No One Fights Alone!
Friday, 31 August 2012
September Song!
Well, September has come around again. Doesn't seem like 12 months since we held our first Womb Cancer Awareness Campaign and yet here we are again!
This year's campaign has had a slow build up as last years was a little bit of a rush job, but nevertheless it was a success and raised our profile - which is good because more women found out about us and are now getting mutual help and support from the women in the group.
We now have 465 people, both male and female, in the main Facebook page. According to FB statistics, we have followers in places like India, Canada, Gibralter, France aswell as US and Ireland.
Its nice to know that we are reaching out to women beyond these shores.
We have 2 events running on FB during September - a month long event to raise awareness https://www.facebook.com/events/488044444558974/ and a one day event to mark International Womb Cancer Awareness Day on 20th https://www.facebook.com/events/185190028280889/ where we are asking people to change their profile pic to something peach to raise global awareness of this cancer.
We have also produced a series of short video's that are available on our youtube channel - the latest of which features some of the women from WCSUK. Check it out here http://www.youtube.com/watch?v=5z0GZNV5Mys
During the month there will be a series of guest blogs from various women who have been affected by womb cancer. I want to thank them for being so brave and open about their experiences.
If you, or anyone you know needs help and support then you can find us on Facebook here https://www.facebook.com/WombCancerSupportUK or via our website here http://wombcancersupportuk.wix.com/home
Stay peachy this September!
This year's campaign has had a slow build up as last years was a little bit of a rush job, but nevertheless it was a success and raised our profile - which is good because more women found out about us and are now getting mutual help and support from the women in the group.
We now have 465 people, both male and female, in the main Facebook page. According to FB statistics, we have followers in places like India, Canada, Gibralter, France aswell as US and Ireland.
Its nice to know that we are reaching out to women beyond these shores.
We have 2 events running on FB during September - a month long event to raise awareness https://www.facebook.com/events/488044444558974/ and a one day event to mark International Womb Cancer Awareness Day on 20th https://www.facebook.com/events/185190028280889/ where we are asking people to change their profile pic to something peach to raise global awareness of this cancer.
We have also produced a series of short video's that are available on our youtube channel - the latest of which features some of the women from WCSUK. Check it out here http://www.youtube.com/watch?v=5z0GZNV5Mys
During the month there will be a series of guest blogs from various women who have been affected by womb cancer. I want to thank them for being so brave and open about their experiences.
If you, or anyone you know needs help and support then you can find us on Facebook here https://www.facebook.com/WombCancerSupportUK or via our website here http://wombcancersupportuk.wix.com/home
Stay peachy this September!
Thursday, 16 August 2012
It's all about September!
Well, its nearly that time of year again - September! Womb Cancer Awareness month!
After our first campaign in 2011 we are aiming again this year to turn Facebook peach by asking people to post a peach themed profile pic, either for the whole month or just for one day, namely 20th September which has been designated International Womb Cancer Awareness Day.
https://www.facebook.com/events/185190028280889/permalink/185660818233810/?notif_t=like#!/events/185190028280889/
Over in the US, our peach sisters at
https://www.facebook.com/uterinecancerawareness have their own event https://www.facebook.com/events/485720588122842/ so you can be sure that we will make the day of 20th September last a lot longer than 24 hours!!!
Throughout the whole month there will be various events taking place both online and in the real world so keep an eye out for any "peachiness" happening near you!!
We are looking for some guest bloggers to write about how womb cancer has affected them so if you fancy having a go then please contact us, either by leaving a comment under this blog or via the Facebook page https://www.facebook.com/WombCancerSupportUK
Don't forget to check out the video's that we have uploaded onto our youtube channel http://www.youtube.com/user/WombCancerSupportUK/videos
See you in September!!
After our first campaign in 2011 we are aiming again this year to turn Facebook peach by asking people to post a peach themed profile pic, either for the whole month or just for one day, namely 20th September which has been designated International Womb Cancer Awareness Day.
https://www.facebook.com/events/185190028280889/permalink/185660818233810/?notif_t=like#!/events/185190028280889/
Over in the US, our peach sisters at
https://www.facebook.com/uterinecancerawareness have their own event https://www.facebook.com/events/485720588122842/ so you can be sure that we will make the day of 20th September last a lot longer than 24 hours!!!
Throughout the whole month there will be various events taking place both online and in the real world so keep an eye out for any "peachiness" happening near you!!
We are looking for some guest bloggers to write about how womb cancer has affected them so if you fancy having a go then please contact us, either by leaving a comment under this blog or via the Facebook page https://www.facebook.com/WombCancerSupportUK
Don't forget to check out the video's that we have uploaded onto our youtube channel http://www.youtube.com/user/WombCancerSupportUK/videos
See you in September!!
Sunday, 5 August 2012
It's over to you..............................
In the run up to September's womb cancer awareness month, I have asked some of the ladies in WCSUK to have a go at writing a piece for the blog. The first one is by joint admin at WCSUK, Debra Parry.
"On Thursday afternoon I sat with my daughter while she made quill pens. She has always insisted on ‘mother-daughter bonding time’, so what better way to achieve that than by being involved with her work and researching and learning new things - or, in this case, old things - together.
I am just over two years post-op for endometrial adenocarcinoma, otherwise known as womb cancer. I had never heard of womb cancer/endometrial cancer/uterine cancer when given my diagnosis in June 2010. Now I know more about womb cancer than I would normally ever have wanted to know and, sadly, am no longer shocked at how commonplace the story of never having heard of womb cancer before diagnosis is among women.
Cervical cancer. I’d had one or two ‘abnormal’ smear test results many years ago – anomalies that cleared up on their own – and nothing from then on. But smear tests were never intended to detect changes to the cells inside the womb cavity itself. There was no evidence of cancer found in my cervix after it was removed in July 2010.
"On Thursday afternoon I sat with my daughter while she made quill pens. She has always insisted on ‘mother-daughter bonding time’, so what better way to achieve that than by being involved with her work and researching and learning new things - or, in this case, old things - together.
I am just over two years post-op for endometrial adenocarcinoma, otherwise known as womb cancer. I had never heard of womb cancer/endometrial cancer/uterine cancer when given my diagnosis in June 2010. Now I know more about womb cancer than I would normally ever have wanted to know and, sadly, am no longer shocked at how commonplace the story of never having heard of womb cancer before diagnosis is among women.
Cervical cancer. I’d had one or two ‘abnormal’ smear test results many years ago – anomalies that cleared up on their own – and nothing from then on. But smear tests were never intended to detect changes to the cells inside the womb cavity itself. There was no evidence of cancer found in my cervix after it was removed in July 2010.
Skin cancer. I’d developed a growth on my leg but the biopsy had shown it wasn’t cancer.
Breast cancer. I’d found a lump but the mammogram and ultrasound etc had shown it wasn’t cancer.
Oral cancer. I’d developed a lump inside my lower lip but, after removal of the lump , it was found to not be cancer.
So far so good...
So, how did the quill pens go? My daughter made twelve in total and I got to try them all. It was fun , but I can safely say I understand why ballpoint pens were invented!"
In late 2006 I passed out on the stairs at home, fell and broke my foot. I’d never passed out before. In 2008 I developed a persistent cough and breathing problems that were diagnosed as asthma. I’d never had asthma before. In 2009, only days after my 50th birthday, I came down with ‘flu’. Several bouts complete with temperature spikes and rashes followed over several months – swine ‘flu’ was doing the rounds, I was ‘unlucky’. And then the bleeding set in. Only minor at first. I noticed I’d begun spotting some months leading into my period. Then I noticed more spotting some months at the end of my period until it happened at the beginning and the end of my periods and they became slightly longer but remained quite regular. Then came some spotting mid-period and the age-old excuses were going through my head: I’m 50, here we go! It must be hormone changes. It must be my age. It must be the start of the menopause.
In April 2010 - following four months or so of abnormal bleeding that, by then, was almost constant and at times worryingly heavy - a lightbulb finally went on in my head. “This isn’t normal, this isn’t the menopause!”and I booked myself in to see my GP. From the moment that month when I told Dr B, “I think we’re looking at something potentially very serious here,” through to the day he telephoned me after my womb cancer diagnosis to say, “We knew there was something there, didn’t we, because of the ultrasound, but I was hoping it wouldn’t be this,” he had never doubted me. Not once. And I shall forever be grateful to him.
So, how did the quill pens go? My daughter made twelve in total and I got to try them all. It was fun , but I can safely say I understand why ballpoint pens were invented!"
(c) Debra Parry
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