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.
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.
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