This is my first blog ever but I thought this might help me out (and maybe some other people going through the same experiences).
A (not so) brief overview of my condition and how it all began:
In November of last year I noticed my neck was swollen and I appeared to be suffering from a 'virus' of some description. Thankfully I worked as a GP receptionist so I was lucky enough to get immediate attention. Several blood tests followed which identified a virus and something else lurking underneath. An urgent 2 week referral ultrasound was then booked to check out my neck. Unfortunately this slipped through the cracks somehow and ended up in the 4 week referral pile but, to cut a long story short, the ultrasound revealed a blood clot on my jugular vein and several enlarged lymph nodes.
I started blood thinning treatment for the blood clot and in the meantime went to see the ENT specialists who performed a biopsy on one of the enlarged lymph nodes. After another 2 week wait for the results (which I wasn't too concerned about to be honest as the 'virus' seemed to have subsided, along with the night sweats), I was given the diagnosis that the biopsy was cancerous but they were unsure where the original source was.
I was then referred to Haematology who said (and I quote) "unfortunately it isn't lymphoma" ..... A CT scan then suggested it could be cervical in nature although the gynecologist I went to see doubted it until he examined me (this is where I left my pride behind!!!). He then broke the news that it was stage 4, grade 3 cervical cancer which had spread to my lymph nodes and therefore surgery was not an option.
Upon seeing my Oncologist, he said that my prognosis was 3-6 months without chemo and 6-12 months with chemo. This came as a bit of a shock as I thought it might be 3 to 5 years! After some short contemplation I decided on chemo because a) I wanted more time with my hubby and new puppy; b) I wanted so see another summer with the sun on my face (I am solar-powered); c) selfishly I wanted a bit more time and I have worked all my life paying taxes to fund the chemo; and d) I'm only 46.
So I embarked on my first chemo session in February (after a horrendous PET scan - I'm claustrophobic). I think I was still in the denial stage at this point as I was planning on going straight back to work the following Monday. However, things took a downhill slide pretty quickly afterwards. Firstly, I went to the chemo session with a slight water infection which was causing me some back pain. They gave me some antibiotics to clear this up so I just got on with it. 2 days later I started to feel rather ill and, upon taking my temperature (which was over 38 degrees), we spoke with the chemo team who advised I went straight to A&E.
Bizarrely, my thermometer was faulty but the back pain I was experiencing was enough to justify my trip to A&E. After being in A&E for nearly 5 hours (most of it without any pain relief until my hubby kicked up a sink) the doctors said I had acute kidney injury and I was then transferred to a ward. After nearly 36 hours they finally did an ultrasound and diagnosed a blocked bowel/constipation despite me insisting the pain was in my back near my kidney. I spent 2 days in hospital being treated for constipation (which was essentially pumping me full of fluids) before they discovered (after another ultrasound, CT scan and x-ray) that my kidneys were blocked and, hence, fluids pumping through me was making the pain a whole lot worse ....... Subsequently they discovered that my right kidney is slightly lower than normal hence why they didn't think it was kidney related because of where I was pointing out the pain to be.
The specialists then got involved and suggested that I needed stents in both kidneys to relieve the pressure. Stents are basically 'tubes' which are inserted into your kidneys that go down through to the bladder to free up the tubes and allow the urine to flow freely. So, off I went to surgery ......
This I am afraid was horrendously painful. The radiologist didn't give me pain relief in my cannula (I can only assume he forgot, or was distracted) and, although he didn't tell me before I got there, he wasn't going to put the stents in he was going to fit me with two nephrostomy bags (a tube goes directly through my back into my kidneys and the urine is collected in an external bag). This was a bit of a let down considering I though I was there to have stents inserted. As he explained afterwards though my blood tests revealed that I had an infection and stents would not have been advisable until it had cleared. He said he would fit the stents when the infection had cleared the following week. He then went on holiday ............. !!!
After my lovely hubby kicked up a stink explaining my prognosis the powers that be in the hospital made several phone calls and I was seen a couple of days later by a 'professor' and he inserted my stents and removed the nephrostomy bags. This, once again, was extremely painful (even though I had some sedation). My hubby could hear my screams from the corridor. I don't think I have a particularly low threshold for pain but apparently kidney pain is akin to labour pains.I was then sent home later that day with just two plasters to show for my efforts.
Later that evening the pain in my right kidney kicked in BIG time and I had a rather bad night to say the least. Hubby then called the ward in the morning and they said the pain was to be expected and to see how it went. Later that day I was throwing up everything I ate or drank so off I went back to A&E...........
After another lengthy stay in A&E they were about to discharge me as the pain had subsided (mainly because I hadn't drunk anything). However (after the insistence from hubby again) they did a blood test which revealed an infection so I was admitted to another ward just before midnight. Another couple of days followed in agony (due to being told to drink lots and lots) before the original hole in my back from the nephrostomy 'blew' open due to the pressure and god did I scream! It turned out that the stent in my left kidney worked but the one in my right kidney was not functioning so another trip to theatre was scheduled and the original radiographer inserted a second stent into the right side and another nephrostomy bag as a temporary back-up which he planned to 'cap off' and remove once the stent had settled down.
During all of this I have no idea what effects I was having from my first chemo session as the kidney problems completely overpowered everything else. However I know my immunity did fall as I had to be placed in isolation for several days (which meant several moves around different wards in the hospital!).
Eventually the blood in my nephrostomy bag settled down and the wonderful nurses capped it off. I decided to take my mind off the process by visiting a colleague in another ward (who bizarrely was scheduled for an operation whilst I was there). Within 1/2 hour I was screaming in pain and had to be rushed back to my ward to have the cap removed. It was clear by now that the second stent had also failed so I have been left with a permanent nephrostomy bag on the right side. I was then kept in for another couple of days whilst things settled down and they also removed the 2 failed stents (this was a lot easier than putting them in but still a little bit painful). In hindsight I wish I had both bags because I now have another water infection and two bags would have stopped this, an additional 2 weeks in hospital (I was in for a total of 1 month), and a lot of pain. If only I knew then what I know now ....
Whilst in hospital, I bumped into the ENT specialist who did the original biopsy and he asked if he could write a medical paper detailing my diagnosis as it was all rather unique so fame at last!!
During all of this drama I missed what would have been my second chemo session and my oncologist wouldn't let me have another one until he had seen me. As it was half term and he was on holiday this meant a bit of a delay but, thankfully, he gave me the all clear to go ahead with chemo again once I assured him I was strong enough. He obviously wanted to point out the additional risk of infection should I go ahead as I have an open tube directly coming out of my back.
So my second chemo session finally took place on Friday. All seemed to go well (apart from a slight problem with cannulation and the fact that I had to keep unplugging myself to go to the loo because of my water infection!). This is the main reason for this blog - I wanted to keep a day-by-day diary to see what to expect symptom wise each time.
Other events - it turns out that I will not be going back to work as my immunity will be severely compromised working as a GP receptionist due to my exposure to 'ill' people. To be honest, I think it was rather ambitious of me to think I would be physically up to it as well. Thankfully I am on SSP now and currently in the process of applying for PIP. A life insurance which pays out on terminal illness was also a God-send. I'm on about 6 different tablets and 2 injections each day and the odd glass of wine for sanity :)
So, here goes with what will hopefully be my day-to-day recording of events from now, although I will try and not go into quite as much detail!.
17th March - Day 1 following Chemo session 2.
I actually felt the best I had for a long time - I didn't have to get up in the night (which I had been doing on average 3 times per night to go to the loo) and didn't seem to be suffering any side effects. We even had a trip to the pub and I had a bath for the first time in over a month (I have had showers so don't smell that bad!!).
18th March
I started injections yesterday for my immunity which I was advised would give me flu like symptoms. I do feel a little flu like and tired but wonder if this is just psychological? Other than that I don't feel too bad. It is a little bit painful when I go for a wee but I have not yet finished the antibiotics for the water infection so hopefully that will subside.
19th March
Today wasn't a good day. I woke up feeling very sick and didn’t actually know which end to point at the Ioo first! Thankfully I wasn’t sick but didn't feel I could actually get out of bed until gone midday. My father visited for an hour or so which was nice. Later in the day I had stomach ache and there was a little bit of blood in my urine. Before bed I had to take some Oramorph (liquid morphine) for the first time in a week as I have pain all the way around my middle :(
20th March
I had a reasonably good night’s sleep and the blood in my urine seems to have stopped. Hubby went off to the Dr's to get a sample pot so they can check for a water infection as well as pick up some new anti-sickness tablets (as the ones I am taking do not appear to be working). Unfortunately they won't be in until later today which is annoying, especially as I was then sick for the first time in ages this morning. I managed to get up about 10 and have a little toast but I still feel sick.
After reading the leaflet on the new tablets it stated they were for hallucinations and other mental health problems – a tad weird. However, good ‘ole Google also stated they were used for anti-sickness as well. I took one immediately but it didn’t seem to have much effect.
The water sample suggested that the infection had not cleared up so I was given some different antibiotics which smell (and taste?) like cat wee!
21st March
Woke up once again feeling sick as a parrot. Hubby decided that ‘enough was enough’ and called the chemo team as my temperature was 37.5 on more than one occasion as well. The chemo team scheduled an appointment for midday. Thankfully I managed to get myself out of bed in time as I was due to see some medical students early morning as part of their training package (although as it turned out they didn’t show due to mixed communication!).
The chemo nurse reviewed all my symptoms and ‘berated’ me for not calling sooner. I naturally assumed that sickness was part and parcel of chemo but not to the level I was experiencing ….. They took bloods and hooked me up to an IV anti-sickness and drip (Ondansetron – the only thing that seems to work for me). 6 hours later I was feeling so much better. So much so that I was starving and could only think about McDonalds (other fast food chains are available!!!). Went home feeling much relieved and rather stupid for having left it so long.
Lesson learnt – always call the chemo team first (rather than the GP); they know what they are dealing with and don’t leave it so long!
22nd March
Woke up today feeling much better thank God. Hubby cooked me a splendid brunch from the Macmillan cook book which went down rather well.
We went into town later in the day so I could purchase some new clothes (I have lost a stone and a half recently and gone down a dress size). After that we had a brief interlude to the local pub for our dog to have a play date with his ‘girlfriend’.
Hubby once again cooked a lovely meal for tea which consisted of pork fillets, spaghetti and kale (I’ve not had kale before and thoroughly enjoyed it).
I decided to try to do without my 4 hourly paracetamol . My body doesn’t seem to have noticed the omission but I did need some late at night as my back hurt near my nephrostomy bag. I also had chest pain later in the evening. Not sure if this is because I ate too much?
All in all today was a good day : 0 )
23rd March
Today I went to the local hospice for a tour (Shakespeare Hospice in Stratford on Avon). I have booked up to attend on Wednesdays. It consists of chatting to people in the same situation, doing crafts, complimentary therapy (such as reflexology, massage etc.), counselling (if required) and a free lunch! Hubby has also signed up for Mondays as a carer.
Popped to the local pub again which was packed (probably not a good idea when my immunity is at its lowest but we forgot that it was ‘psychic evening’). There were a lot of women there hoping to make contact with Patrick Swayze (I would imagine). I happened to be wearing a turban and gold hoop earrings – I think most of the pub thought I was the entertainment!
24th March
Didn’t really do much today (other than had my weekly bath as my nephrostomy bag was due for a change). I needed to restart the paracetamol after my bag change as this always leaves me a little bit sore.
I have started to feel a little bit fatigued; I fell asleep on the sofa twice without warning!
25th March
Today was my lovely hubby’s birthday so we decided at short notice (can’t really plan anything at the moment), to book a night away in a hotel. We decided to go to Stratford which, although only 6 miles down the road, has lots to offer. We got a really good last minute deal so headed off.
Friends of ours were just down the road in Coventry so we arranged to meet them in a local pub which was nice to catch up. Spent a great deal of the conversation talking about my prognosis as, although they knew I had cancer, didn’t know the timescale. I think this is going to be one of many conversations to come; a real shame to have this dominate.
After going back to the hotel to change we headed off to a Thai/Tapas restaurant for a meal. I completely overdid it and tried to have a starter and main course. Half way through the main I felt really uncomfortable and couldn’t finish the rest of it (thankfully they offered me a doggy bag). I had to excuse myself to the loo for a tear or two as it upset me not eating my meal (I’m a big foodie), and it also dawned on me that it would probably be the last birthday I will share with my hubby.
I’ve started to experience a couple of odd symptoms which I’m not sure if they are related to chemo or just psychological – mild nosebleeds and numbness in my big toes.
26th March
I didn’t have a particularly good night’s sleep in the hotel due to the fact I had eaten so much and was feeling sick/uncomfortable. Later in the day I nodded off again twice – this is becoming a regular occurrence. I tried a hot water bottle at bedtime to try and settle my stomach. All it seemed to achieve was create an awful lot of rumblings!
The dog is coming out in sympathy with me I think and he was decidedly ‘under the weather’ during the evening!
