I’ve tried many times to write about this, and always found it too emotional and too much to deal with. Even almost a year on from finally getting a diagnosis I still feel the same. Part of me doesn’t know where or even how to start but the other part feels very strongly I need to get this down and out of my head, for my own sake and also so maybe other people can pick up some advice if appropriate.
Warning!! Will contain gory symptoms of the “lady” variety (sorry, kind of vital, can’t escape it), look away now if not ready for that!
So, here we go.
Rewind to 2012 where I was a fairly fit and generally healthy woman. Gradually I was experiencing more and more trouble at that time of the month. It began with very heavy periods, which I’d always been prone to, but things were just getting worse and worse, enough to make me think it was time to do something. They would suddenly go on for much longer than normal too. Pain was a big factor, it was stopping me from doing things. So I went to see my GP who did the usual thing of putting me on medication to slow the bleeding, been there before. Only this time it didn’t work. At all. So back I went and after a few tries of different medications equally useless it was decided I should have an ultra sound scan. Probably fibroids I was told. By now a few months have gone by and things are getting much worse.
Off I went to Hospital Number 1 for my scan where I was very impressed they were really thorough and there and then then radiographer said to me I had nothing to worry about, “only one, small fibroid.” It was a relief to have that information straight away and not have to wait and worry. I was told to go back to my GP to discuss the results and the way forward.
This is where it gets me every time.
On ringing to make an appointment I was told by the receptionist the scan was clear, there was no need to see the doctor. Err, excuse me? I am so very lucky I had more information to hand and felt strong enough to over rule this and demand an appointment. Had I not, this one moment could’ve changed my life in a way I really can’t bear to think about. From now on I had a fight on my hands all the way, starting with a flippant receptionist who thought she knew better.
I returned to my GP and she was very good, discussed the scan and yes there was a fibroid there so the next step was to send me to see a gynaecologist and they would decide what treatment would be. It was now October and every month was causing me considerable distress, I was lucky it coincided with weekends mainly so I wasn’t missing work but I was incapable of doing anything at home during the worst and would have to spend a lot of time resting and willing painkillers to work. I wasn’t sleeping much either, having to get up numerous times in the night to sort myself out. So the GP took all this into consideration and marked her referral to the consultant as “urgent”.
I waited a few weeks and then gave the hospital a call. After the usual being passed around from department to department finally I was informed my referral had been down graded to “routine” and I was on a waiting list of up to 26 weeks. 26 weeks??? That’s over 6 months!! I could be waiting half a year to see someone, just a consultation, that’s not even any treatment! I was bowled over by this and asked them to re grade it as the GP had done. No they couldn’t do that, I’d have to go back to my GP, who’d have to write to them once again to get it re graded. It makes me so angry even now. The stupidity of it all, and the amazing waste of time and money. Having to go over everything all over again. Just trying to get an appointment to see my GP is difficult enough and can take a week.
Back I went and another letter was sent. Thank goodness my GP was supportive and not dismissive of me. I was also asked if it mattered to me which hospital I was seen at and if I’d mind being seen by student doctors (under supervision obviously) so I agreed to anything and everything that would speed up the process.
Eventually I got my appointment and in January 2013 off I went by myself to Hospital Number 2. There’s nothing nice about being examined and having to discuss lots of embarrassing problems but at last I was in the system, being looked after and on the way to getting this thing dealt with, hooray!
It didn’t really turn out like that sadly. Having seen my previous history of Hodgkin’s Lymphoma and examining me the consultant wasn’t convinced it was a fibroid. I had never considered it would be anything else. In fact I’d already been told that’s exactly what it was. Utterly shell shocked and all of a sudden felt very alone. I remember sitting in the car ringing John and crying my eyes out.
I was now at the stage where I had been bleeding for 40 days non stop. I had incredible pain and sometimes couldn’t go into work. I had fevers where one minute I was freezing cold, wrapped up in a blanket by the fire, next thing I was roasting hot with the sweats. I was exhausted, after work I’d be in bed by 8pm every night just to give myself a chance of being ok to go in the next day. I knew I’d be up every couple of hours in the night.
The next stage was to see another consultant at the same hospital who was more specialized. This happened fairly quickly and I made sure I had John with me for support this time. By the end of another examination she didn’t know what was wrong with me either but said it may be polyps. This gave me some hope, that’s ok, I can deal with that, not as scary as we thought. Next, another referral, another consultant and another hospital!!
Referred to a gynae oncologist. Oncologist… Cancer doctor.
“Don’t be worried, it’s just because he’s a specialist in that area of the body not because we think you have cancer.” I look back now and wonder if they knew then but were putting off telling me until they knew exactly what it was.
More wating to get an appointment, constant ringing to chase it up and push things onwards.
Next stop Hospital Number 3, Consultant Number 3. Sat in a tiny waiting room crammed with people surrounded by cancer care leaflets screaming at me it seemed. My admiration for Consultant Number 3 knows no bounds. He was brilliant. He talked in a way I could understand, he didn’t avoid things and was very honest. “I think it’s cancerous. It’s not a recurrence of the Lymphoma and it’s not cervical.”
BOOM. Back there again. Back 10 years. How could my family deal with cancer AGAIN?? This would be the 4th time for us.
I would need an MRI scan (Hospital Number 4!) to determine if there was any spread. Whilst that was happening someone in a lab somewhere was trying to decipher what on earth I did have. So you’d think by now things are speeding up and running smoothly but no. I had to chase and chase a scan appointment. Trying to get through to the department was such hard work and when I finally did I was told it would be in 10 weeks. Oh ok here we go again. NOT acceptable. By now I was on first name terms with Consultant Number 3’s secretary and rang her to get her on the case. In next week. WHY is it so difficult? I am so incredibly frustrated at the “system”. I was so angry that at every stage I was being slowed down, passed onto someone else, sent away. NOTHING went smoothly.
Very nervously returned to see Consultant Number 3 for the results of what it was and whether it had spread.
Good news: no spread!! Massive relief….
Bad news: still no idea what it was
Decision made: hysterectomy. Procedure week beforehand to “see what’s going on in there” before actual op.
Now we’re getting somewhere. I’m sent off along a long corridor stopping off at various departments for pre op tests and the horrendous task of ringing my family to tell them once again we may well be dealing with cancer.
At the end of February 2013 I was signed off work by my GP. I had no idea then it would be for a year. I just couldn’t cope with the symptoms or the stress. Work were and continue to be incredibly understanding and caring. They have constantly supported me throughout this. I appreciate how lucky I am, so many people have a very different experience.
My parents came to stay while I was due to go in for my pre op procedure. I went off to pack my bag before dinner, bit nervous but I’d only be in for a few hours. 6pm and the phone rings. It’s Consultant Number 3. Now I know something’s very wrong. Why is he calling the night before at this late stage?? Even if it was to cancel, he wouldn’t be ringing.
And there it was, a diagnosis, almost… He was sorry to tell me I had neuroendocrine cancer. It’s very rare, very serious and very aggressive. I would be having the full radical hysterectomy the very next day.
Tears. Confusion. Terror.
I can remember John driving me to the hospital that night and I really really struggled to hold it together. I was very frightened. Rare and aggressive are words you never want to hear. Having been through so much with my family and also close friends with cancer I knew a fair bit but had never ever heard of this variety which only added to my worry. I decided from that moment I would resist the urge to “google it” and find out more. Nothing I read would apply to me, why scare myself with statistics and prognosis?? I just needed to concentrate on what my doctor told me about me, nothing more.
I was put on a women’s surgical ward and was ok overnight. The next day was extremely difficult. I knew I was 2nd on the list to go to surgery but no idea when that might be. Two anaesthetist’s came to see me, neither of them knew of the new plan and kept telling me I was having the pre op investigation. I was totally confused. So am I having the hysterectomy or not?? Then the surgeon, Consultant Number 3, came to see me and reassured me I absolutely was having the full operation. By now all I wanted was whatever was in there gone. But I will never forget him sitting on the end of my bed, looking me in the eye and telling me this was very serious. I felt like this was it, all my family had been through and overcome, our luck was running out.
Nurses discussed the procedure with me but no one, not one nurse even mentioned the fact I had just had a very frightening cancer diagnosis. This angers me in a way I can’t describe. I felt that as they were all avoiding it obviously it was very bad news and no one wanted to talk to me about it. I felt very very alone waiting to be called for that operation. As it happens I had had cancer before, I knew a bit about what may be ahead. What if that had been my first experience?? I thought they were very unprofessional in that sense.
2pm and time to go to theatre, I was really scared! Everyone was brilliant though and put me at relative ease! It took about 5 hours, John and mum were there when I was taken back to the ward and Consultant Number 3 went to tell them all was ok. The tumour was gone (as well as my womb, overies…you get the picture). Apparently it was 9cm x 9cm, pretty big… He couldn’t see anything anywhere else. This is as good as it gets!! It would be sent for tests and I would be on about a 6 week recovery and a lot of medication. I had one good cry about things then decided I would just focus on getting over the operation, “forget” about the test results (not really likely but put to the back of my mind at least) and concentrate on getting well for whatever lay ahead.
I recovered well, with great help from family and friends and I think a lot owed to the fact I was a fairly fit person before so I didn’t struggle as much as I had expected to. Getting up and pottering about definately helped. A lot of people were horrified, “you should be resting” but being mobile helped me recover quicker.
Then came the dreaded time when I had to get the test results and face things. I was utterly convinced it would be the very worst of news, having had weeks to mull things over in my mind at night when I couldn’t sleep for worry.
It’s fair to say I don’t think Consultant Number 3 has ever seen someone so happy to be told they’d be having chemotherapy. I’d had to wait hours in the waiting room to get called through to see him and was an emotional mess by the time I did. He was sure they’d got everything but further treatment was advisable to stop it coming back. This was the best news we could’ve hoped for under the circumstances.
So I was being referred to Hospital Number 5, Consultant Number 4.
Back to Velindre, where I’d been looked after so well ten years ago.
This is where I finally, a year after my journey for a diagnosis began, got told I had Ewings Sarcoma…a type of bone and soft tissue cancer usually found in children and almost never heard of in the womb of a 37 year old woman.
Getting an “early diagnosis” is vital. We know this. It’s common sense the earlier you get a diagnosis the better your chances of being able to treat it are. But as my long garbled story proves, this can be anything but straight forward. So my advice is this:
– keep a record of all your appointments, what the outcome was, what the next step is. You can refer back to this if and when you get fobbed off by someone!!
– Get to know your consultant’s secretary, their name and working hours. I was ringing one department after school run time only to discover they shut at 3pm. Ask for them by name.
– if you’re ok with it, get on any cancellation lists or agree to be seen by students. This just means there are more people looking at your case, you won’t be abandoned by qualified doctors, and they may be more thorough as they have to go through things with students.
– don’t take no for an answer, keep pushing. Make a nuisance of yourself! I gave up on being nice and just made sure I was ringing and chasing at every opportunity.
Being told I had cancer for a second time was a very scary experience. I held in my mind a talk I had heard from an incredible man called Findlay. He was part of the team that I climbed Scafell Pike with, with Cancer Research UK the previous year. He gave a very emotional and inspiring talk, telling us all how he had been treated for cancer 3 times. 3 times and here he was climbing England’s highest mountain! He gave us all so much to think about but for me he gave me hope. If I could do it once, I could do it again.