Got to face I have incurable cancer : Chemotherapy No.5
Well Chemo 5 is now done and dusted its# has been a very emotional and stressed three weeks. I am so glad I am about to have chemotherapy 6 which is hopefully going to be my last, at least for some time anyway.
Bristol Oncology department has a fire
The hospital where I receive my treatment had a fire that caused a lot of smoke damage to the oncology department. The hospital was closed and there was a lot of disruptions to people’s chemotherapy, outpatient’s appointments, and radiotherapy. I understand that this is a disaster that can not be helped but surely in this day and age when contingency plans are in place for everything it could have been handled a lot better. One of my friends had a delay in having her new chemotherapy treatment and this can caused added stress to someone who is going through an already shite time.
I attended my pre-chemo appointment which I must be a few days before chemotherapy for my oncologist to check I am well and prescribe the chemotherapy. This is a chance to discuss any problems I have had during chemotherapy in case things need to be altered and for him to give the go ahead for the next chemotherapy. Also, this time round I should have been receiving my ½ way point scan results which is very nerve racking.
I knew my oncologist was away but since I was on Breast Cancer Care – Younger Women’s with Secondaries workshop which I will talk about later this is the only day I could have the appointment We agreed that I would see his registrar, but I said I do not want any new information or scan results from a registrar. My oncologist said he would mention this. You might think this is strange and you would want to know about any results straight away, but I have a bad experience with registrars. They don’t know the patient, they don’t read the notes fully and they don’t seem to have a good bedside manner. When my dad was going through cancer treatment and we saw a registrar they always gave the wrong information or information that should not have been shared at that point and caused undue stress, so I did not want this to happen and it did.
Registrars really need to learn about the patient before giving news!!
I was already a little anxious about this appointment as I had, had an emotional time over the previous few weeks and due to the fire at the hospital I had to attend a different part of the building for my appointment which seems a little lame but little changes like this take me out of my comfort zone and do cause anxieties.
The registrar seemed nice and she explained that she did not have my main notes with her due to the fire and then before I could stop her she said it was good and bad news with the scan. Now there was no way I could leave without knowing further information, but I didn’t have a choice anyway as she ramble on.
“It was good news the Cancer has now gone from my lungs and it is also working on the liver however there is bad news as there is now cancer in the spine and sternum”
This was a total shock and I asked if the Cancer could have been there before and hadn’t been noticed the scans, but she said no it is new cancer as it wasn’t there before.
So, I was now aware that the cancer is spreading even though I am having chemotherapy this is now scary as F**k as it means that its more aggressive than I thought. To top it off she could not answer any questions as she had no further information, so I left numb and in shock not really knowing what is going on.
She did explain I would now need a bone strengthening injection ever 3 weeks and explained the side effects. She said it can really affect your mouth, so it is important to visit a dentist asap and they would also be giving me calcium supplements as it can cause lock jaw. She said something else and I cannot remember her exact words, but I got home and told my mum that had to take these tablets every day otherwise my jaw is going to fall off, god knows what she said but I am convinced it was something along these lines. So now my mum says have you taken your tablet, so your jaw doesn’t fall off every day I tell you something it is really making sure I do take the tablet as I don’t fancy waking up one morning with my jaw on the pillow next to me,
I managed to get an appointment with the Dentist 2 days later before I started this new injection and was told I needed a filling, but I needed to check with my oncologist as I was told I could not have any dental work done during chemotherapy but when I asked him at the next appointment he confirmed I could have a filling but no extractions.
Anyway, after this heart-breaking news I stupidly went on Google and straight away it pops up with how long I might have left, and it wasn’t long so obviously I am now distraught, and I wrote my first post about getting a terminal diagnosis and it was full of emotion as I was when I wrote it. I felt better after writing it and I had lots of comments from friends that said they didn’t realise it was that serious, even though I have been saying it all along I don’t think they have been listening. Throughout this whole situation I have learnt to be honest I am not hiding anything from anyone if they don’t want to listen or read about it then stop looking at my Facebook. During my primary diagnosis I kept comforting others saying it’s OK I will get through this and it was tiring, this time I need to think about myself it might sound selfish but I do.
I will fight this, but I am not hiding things this time people need to realise I might not be able to fight it as it is now incurable and yes, it’s scary don’t I know.
So even though it was excellent news that it has worked in the lungs and nearly the liver I just can’t now get my head around how it has now spread to the bones. I think what I fear the most is pain as having bone mets is supposed to be painful. She did ask if I was in any pain, but I am not but now I know it is there it is like I am now having phantom pains.
I am absolutely devastated I feel as though the years I thought I had now being ripped away from me and I could only be weeks or months so it’s a scary time.
My mum again has been amazing and a total rock I do hope though that she feels that she can cry and ask me any questions and talk about anything because she is part of this as well.
My mates have also been supportive, and I’ve had so many nice messages. I want to be honest about my treatment and it’s hard to have to go through the same conversations with everybody, so I did just post an update on Facebook maybe it’s not the best place to share this information but I’m not going to hide anything.
It was then a Rollercoaster few days and that was even before chemotherapy and the side effects kick kicked in. I think because I had been to the Penny Brohn centre and on the Breast Cancer Care younger women’s secondary meet up, I was in quite an emotional place anyway and then to be see if this news. I am just thinking this is the end. I need to get my head around it and get back into the positive frame of mind otherwise it is just going to be too hard.
I have a contact for Macmillan and she happened to be visiting the day after I got this news to see how I got on with the course I went on a few weeks ago but bless her I ended up crying on her with this new information. She was supportive and being able to unload it in my own house with a professional did help quite a lot. It’s different talking to friends and family than it is to talk to a healthcare profession, I cannot praise her words of support enough.
Next, I am told I will not be able to have chemotherapy
The day after getting this diagnosis I received a phone call to say that I would not be getting chemotherapy due to the fire I went mad. I explained that yesterday I had received news that my cancer has spread and there is no way I will not have chemotherapy this week it will just blow my mind. The poor girl on the phone was only the messenger bless her she handled it well she said she would go and speak to somebody and get back to me. But I am a little impatient and couldn’t wait so I phoned the chemotherapy booking centre myself and then they confirmed that chemotherapy was going ahead on the day that mine was due as normal As soon as I put the phone down the girl from earlier called me back to say that the chemotherapy was going ahead and she was so apologetic and then I started crying again as I felt bad how I talked to her.
I feel as though I have spent the last two days just crying I didnt realise I had so many tears stored up. If I’m not crying now I am angry it is so hard to receive news like this should I even bother with the next round of chemotherapy but as it is working so well in the organs I’m going to give it a shot.
Side effects from my 5th Chemotherapy
The chemotherapy went ahead without a hitch I had my new injection in my tummy which didnt hurt and surprisingly didnt even bruise. I have had a little more bone pain than normal this time round. I also got a very spotty face again, but this only lasted a couple of days I swear cameline lotion is the best as it is really clearing these spots up quickly. I also got a bad heat rash on my tummy which caused blisters and was so painful as it bled again the cameline lotion helped sooth this as applying it 3 times a day quickly healed it up. The district nurse gave me some sort of barrier cream in case this happened again.
Planning my funeral
I have been putting this off for the last 7 years. When my dad passed away and nothing was in place my mum planned and pre-paid for her funeral and I said I would but then I got diagnosed with breast cancer and it was just too raw to put anything in place but not I have secondary’s and it really is a possibility that I may die sooner than I thought I have decided to do this. Mainly so my mum doesn’t have to.
It was hard going to the funeral directors to get the information pack but that is as far as I have got. I have read the pack and I don’t want anyone at my funeral I don’t want to waste money on coffins, limousine, or flowers. A few people have said I am selfish for not letting them come to my funeral but surely this is my choice. One friend made me laugh when I said I had been to the funeral directors to plan my funeral. He has also had cancer and said when is the date, so I can book the day off work. OK it is not this specific I can’t choice when it will happen as believe me if I could it wouldn’t be at least until 2058 when I will be 77.
I will write a post on planning my funeral when I can get the courage up to actually do it.
Good things this time
It is weird this chemotherapy I wasn’t laid up for as long as normal. I normally need at least 8 days in bed to get over the side effect maybe it was the mentality of thinking it was more progressed that made me get out of bed after 4 days as I didn’t want to waste a minute of the time I had left.
I like to do something in between each chemotherapy and this time I hired a car and went to visit friends and family up north. I met up with school friends that I have not seen in 20 years and it was lovely meet them again rather than just talking on Facebook.
I also decided to get a car on Motability which is the main reason I hired the car it was to go car shopping. All the car showrooms are scattered around Bristol and they are hard to by public so this was the easiest option.
I have now chosen my car and will share in the next post as hopefully I should be able to pick it up after chemotherapy number 6.
I attended a blogging event to try a new afternoon tea menu and find out more about champagne, a little gutted I could not drink as much as I normally would which might be a good thing.
I apologise if this is quite a depressing post, but it has been a lot harder this time round mentally. I don’t want to slip into a dark place, so I have worked on my blog this month and started to research some trips in the UK which I am hoping to do so if you have any advice on Cornwall, Scotland and Ireland please do get in touch as that’s is my plan for the summer.