24 days since my catheter was put back in. What I wasn’t told was that a part of it had to be changed every 5-7 days.
I found out by googling after receiving yet another course of antibiotics for Water Infections. So armed with this new knowledge I rang the GP. ‘No’ says GP, we can’t prescribe you that part you need to speak to hospital. Hospital says ‘No we can’t give you that part, you have to speak to District Nurses’
Now I was told by a rather stuck up practice nurse that I could not have a District Nurse as I wasn’t housebound.
No-one told me that the District Nurses run a cathter clinic and they were in charge of all supplies needed. This may of been why the pharmacy had no supplies in stock. The Pharmacy didn’t think to mention to me that the District Nurses dealt with it all.
So I finally get to speak to a real life District Nurse after going round the houses of the NHS. They don’t hold the supplies either. But they will order them all for me and they will be delivered to my house. They also told me that they run a catheter clinic. Shame not one of the MANY nhs people I’ve seen since February 1st thought to mention that to me.
So today I recieved from Parcelforce a HUGE box of supplies. 24 days after I had my catheter put back in. If I hadn’t googled about my water infection I would be none the wiser that I needed this part changed every 5-7 days.
How can they get it SO wrong ?????
Today I had my appointment with the Radiotherapy Oncologist. I went ready for a fight. I had decided long ago that I didn’t want Radiotherapy, and my mind hadn’t meandered from that decision. I thought today there would be an attempt to persuade me to have it. Which is why, if truth be told, I wanted to go in on my own.
It was a pleasant surprise for Dr Penny to agree with my decision.
Radiotherapy of the vagina is pretty grim. The rays have to go through your bladder on the way in, through your vagina, and out through your bowels on the way out. The side effects for your bladder are incontinence and persistant urinary tract infections. I had already been warned that as I still have a catheter it would be very unpleasant.
The vagina fuses shut. You have to insert vaginal dilators to reopen your vagina and to keep it open.
Your bowels are affected as is your rectum. You suffer from diarrhea and an friend who has gone through this says it is like ‘Shitting scalpels’
Add to that 4 weeks of travelling to Bath every day (Possibly shitting and pissing yourself on the way!)
So I’m mighty glad she agreed with my decision.
There is a 10% chance the cancer will come back. Radio would of reduced that chance but not eradicated the chance of it returning completely.
She said that some in my position would be going for Radiotherapy, but I think I’ve made the right decision.
It wasn’t an easy one to make.
So today a friend took me to a local garden centre for a mosey around and coffee and cake.
I had to have a ‘wee’. At the moment this consists of me standing over the loo holding my tube and flipping the ‘tap’. Holding the tube and letting it flow. I suppose I could sit down but dangling my tube in public toilets probably isn’t the best idea.
As I was standing there I heard another lady come in, and go into the cubicle next to me. I wonder what she thought of the feet of the woman next to her.
She did make a rather hurried exit.
I also encountered my first ‘I’m going to avoid you because I know you’ve had cancer’ moment. The friend I was with has also had more than a brush with cancer. She told me that she has had people actually cross the road when they have seen her coming. Obviously I’ve not been out much, except to hospital/doctors appointments and hadn’t come across this kind of behaviour yet.
But today, someone who knows me pretty well and normally comes up and speaks to me, was also at the garden centre. I am sure he knows of my situation through mutual friends. It was almost comical how I witnessed him stall and be distracted by things so that he didn’t have to walk past us and presumably have to say hello. (He was coming from behind and we were walking slowly).
As we said today. There’s nowt as queer as folk.
Really hard to believe it’s 4 weeks since the Op.
This week has seen me back and forwards to the GP’s. My wound has become infected and needs dressing and obviously I have my ongoing catheter. Just had a call from my GP who has had results back from the swab they sent off and the antibiotics I was prescribed earlier today need to be changed. So another trip down there tomorrow to pick them up from the chemists. All a bit of a pain in the arse while I still can’t drive. A lovely assortment of people have given me lifts.(It cost me £10 round trip in a cab the other day) Thank you. Also thank you to the person who is picking my son up and taking him to school for me. You know who you are!!
Macmillan nurse rang today to see how I was getting on. She has spoken to Nick and he will be referring me to a Urology consultant to see what can be done about my bladder. The hope is that is just needs a little more time to rest and eventually it will kick back into life.
I am knackered continually. The day starts with the whole ‘Get the boy ready for school routine’ then it seems this week at least followed by a trip to the Doc’s. Add a shower, or a bowl of washing up, or cooking a dinner into the mix and that is about my limit for the day.
I did have a trip out into the ‘real world’ this week too which was lovely. A lunch and coffee’s in a local coffee shop. Was great to be out of these four walls!!! Thank you to that friend too.
I’ve been reading stories from other cancer people! (Cancerians?) It’s this time when it’s ‘all over’ that people find the hardest. Friends and family seem to think it’s all good and sorted. I mean, I don’t have cancer anymore right???
In fact the whole diagnosis, treatment part was a case of head down, plough through it. I got through it, with amazing humour and strength. Why? Because I had to.
Now I’ve left battered and wounded physically and emotionally and knackered.
Roll on spring!!!
As you know I am fundraising for Jo’s Trust with a target of £2,500 by the end of the year.
I can ‘earn’ £6 for every referral to groupon (An email discount scheme)and £5 for every referral to Birchbox a home delivered beauty and lifestyle box.
For the sake of an email popping into your inbox I can get £13 off each of you at no cost to you.
If you want me to refer you send me an email at firstname.lastname@example.org
Alternatively visit my just giving page
or simply text TUGS99 £1 to 70070.
And I’m feeling good.
I have some alone time! Don’t seem to have had a lot of that recently. Son went off to school today thanks to a friend picking him up, just had a laugh with another friend who popped in, she has now left for work. Now I have a few hours before a cleaner arrives and an appointment with the practice nurse later.
Yesterday I was supposed to be at hospital for my Radiotherapy Consultation. I made the decision that I’ve had enough for now. I am certainly not in the right frame of mind to deciede if I want further treatment. So I have postponed that appointment for a fortnight. Hopefully I will be feeling stronger mentally and physically by then and can give the proposals more considered thought.
For now I’m going to take a very long overdue shower, put some make up on, and try and do ‘normal’ !