A week later I have only just recovered from the chemo. Sunday I was vomiting all night, not pleasant! I was not sure if I had got a bug or if it was still from the chemo. I was fine in the day and by 8 the weirdest sensation came over me and I started to feel sick. I do not cope with being ill very well with having a bad pain thresh hold. I did not know what to do with myself when I started to feel very strange. Vomiting took away that feeling but soon came back. It was hard to sleep that night, I was very restless.
The next day I was shattered! I stayed in bed all day which is probably what my body needed. For the next two days I still did not feel quiet right. The unusual feeling came over me the next night unexpected. There was not a lot I could do other then go to bed and think of lovely thoughts until I feel asleep. I thought about something I wanted in the future and pictured the whole scene. It was beautiful, and worked a treat.
I still feeling sick the next day, the nurse told me I should keep taking my anti sickness pills. I had not been as I did not think I could take them for so long and was fed up of taking pills that had other side effects. I started taking them again and felt better. I was so bored and fed up of still feeling unwell and desperate to get out the house.
I rang the oncologist about the steroids. He said they affected people in different ways and that one patient wanted to kill her family when on them. He told me to try and keep positive and that it will help me get through it. In other words it was like was telling me to just get a grip and get on with it. Not very sympathetic at all. I obviously have a sensitive head as well as everything else and really struggle on the steroids.
I was slightly annoyed at what he told me because I have been incredibly positive but when your feeling so unwell for a while and the pills that are meant to be helping you are causing other horrible side effects its kind of hard to feel great about stuff.
In the end he told me I had to take the steroids before the chemo or I would suffer the awful side effects of the next lot, but he would not give them too me after.
It was not until yesterday when I started to feel a lot better. I had an appointment at the hospital to talk about getting a wig. I must say the lady was not the most helpful. She told me they only did synthetic wigs which was not actually true. Thank goodness I had gone to Trendco in Nottingham (their suppliers) as I knew I could have a real hair wig. Instead of the lady kindly saying she would ring up I had too ring and find out what it was called. When I had found out the name the lady said "Oh yes I know now."
I assumed it was because it cost more that they do not tell you they do real hair ones. So, I have ordered a plain long brown wig which I will get the wonderfully talented Jenny Chase to cut into the style I want. It should arrive in about 10 days. I think I will find it very strange at first but I am sure I will get used to it. I am not planning on wearing it all the time, probably when I am out and about. It will keep my head warm in this freezing weather we are having too.
The nurse came round to flush my PICC line in the afternoon. She was not able to do so which meant I had to go into the hospital this morning to see if they could flush it. When we drove in I knew something was going to be up because I kept seeing the number 11, the number tells me my guardian angel is here for me.
I was right, the line would not flush. I had an X-ray to see if it had gone up against a wall. The nurse was shocked at the length of the line coming out of my arm anyway saying it rang alarm bells for her. I had the X-ray and she was shocked at what she saw. The line is meant to be a peripherally inserted central catheter and the line should sit in a large blood vessel above my heart. It was no where near! The line was only just under my collar bone near the top of arm. The nurse was horrified, as was I that it had been left like that. It could have easily been infected to. It did not affect my chemo but was pointless being there, it was just a glorified cannula.
The only choice was for it to be taken out. I was infuriated that I had gone through all that for just 2 chemos and it to be taken out. My options are now, another possible line, depends on how the hole heals up. The nurse is reluctant to put another on in the same hole anyway in fear of infection, a hickman line which is for more long term chemo, this goes in through the chest or back to having needles. Obviously none of these appeal. I have to make a decision to which is the best option. Right now I have no idea what I want to go through.
The Hickman line does not seem appealing to me and also worried as I am allergic to all the dressing and the dressing I have been having was exposing the entrance too much and can have easily been infected. I was lucky it had not been. Having needles stuck into my tiny veins that run away is also not a pleasant thought either. I am hoping to talk to someone next week about it so she can help me decide what will be the best option.
So I arrive home very pissed off. The only good thing is that I no longer have this long line coming out of my arm! I needed cheering up, and it happened. I got a call from a lady at BBC radio Leicester saying she had read my blog, was bowled over by it and was interested in interviewing me. I was so pleased. I have the interview on the 22nd January. Some good news at least.
I was due for another hospital appointment in East Grinstead next week. Not really wanting to trek all the way down there I rang up seeing if it was necessary. The appointment was for the surgeon to look to see if I needed my expander filling. The nurse said if I was happy with the size that it was OK to wait till chemo was over. I said I am more then happy and if it was any bigger I would be leaning slightly to the left!
I asked her when I would be having my surgery after the radiotherapy, assuming it would be around a month. She told be it would be 6 months to a year. I had no idea it would be that long and was a little disappointed. I thought I would be getting my new boobs by summer. I guess there will be no bikini wearing for me this year. I would have fitted right in with my fake boobs when I go to California as well.
The next day I was shattered! I stayed in bed all day which is probably what my body needed. For the next two days I still did not feel quiet right. The unusual feeling came over me the next night unexpected. There was not a lot I could do other then go to bed and think of lovely thoughts until I feel asleep. I thought about something I wanted in the future and pictured the whole scene. It was beautiful, and worked a treat.
I still feeling sick the next day, the nurse told me I should keep taking my anti sickness pills. I had not been as I did not think I could take them for so long and was fed up of taking pills that had other side effects. I started taking them again and felt better. I was so bored and fed up of still feeling unwell and desperate to get out the house.
I rang the oncologist about the steroids. He said they affected people in different ways and that one patient wanted to kill her family when on them. He told me to try and keep positive and that it will help me get through it. In other words it was like was telling me to just get a grip and get on with it. Not very sympathetic at all. I obviously have a sensitive head as well as everything else and really struggle on the steroids.
I was slightly annoyed at what he told me because I have been incredibly positive but when your feeling so unwell for a while and the pills that are meant to be helping you are causing other horrible side effects its kind of hard to feel great about stuff.
In the end he told me I had to take the steroids before the chemo or I would suffer the awful side effects of the next lot, but he would not give them too me after.
It was not until yesterday when I started to feel a lot better. I had an appointment at the hospital to talk about getting a wig. I must say the lady was not the most helpful. She told me they only did synthetic wigs which was not actually true. Thank goodness I had gone to Trendco in Nottingham (their suppliers) as I knew I could have a real hair wig. Instead of the lady kindly saying she would ring up I had too ring and find out what it was called. When I had found out the name the lady said "Oh yes I know now."
I assumed it was because it cost more that they do not tell you they do real hair ones. So, I have ordered a plain long brown wig which I will get the wonderfully talented Jenny Chase to cut into the style I want. It should arrive in about 10 days. I think I will find it very strange at first but I am sure I will get used to it. I am not planning on wearing it all the time, probably when I am out and about. It will keep my head warm in this freezing weather we are having too.
The nurse came round to flush my PICC line in the afternoon. She was not able to do so which meant I had to go into the hospital this morning to see if they could flush it. When we drove in I knew something was going to be up because I kept seeing the number 11, the number tells me my guardian angel is here for me.
I was right, the line would not flush. I had an X-ray to see if it had gone up against a wall. The nurse was shocked at the length of the line coming out of my arm anyway saying it rang alarm bells for her. I had the X-ray and she was shocked at what she saw. The line is meant to be a peripherally inserted central catheter and the line should sit in a large blood vessel above my heart. It was no where near! The line was only just under my collar bone near the top of arm. The nurse was horrified, as was I that it had been left like that. It could have easily been infected to. It did not affect my chemo but was pointless being there, it was just a glorified cannula.
The only choice was for it to be taken out. I was infuriated that I had gone through all that for just 2 chemos and it to be taken out. My options are now, another possible line, depends on how the hole heals up. The nurse is reluctant to put another on in the same hole anyway in fear of infection, a hickman line which is for more long term chemo, this goes in through the chest or back to having needles. Obviously none of these appeal. I have to make a decision to which is the best option. Right now I have no idea what I want to go through.
The Hickman line does not seem appealing to me and also worried as I am allergic to all the dressing and the dressing I have been having was exposing the entrance too much and can have easily been infected. I was lucky it had not been. Having needles stuck into my tiny veins that run away is also not a pleasant thought either. I am hoping to talk to someone next week about it so she can help me decide what will be the best option.
So I arrive home very pissed off. The only good thing is that I no longer have this long line coming out of my arm! I needed cheering up, and it happened. I got a call from a lady at BBC radio Leicester saying she had read my blog, was bowled over by it and was interested in interviewing me. I was so pleased. I have the interview on the 22nd January. Some good news at least.
I was due for another hospital appointment in East Grinstead next week. Not really wanting to trek all the way down there I rang up seeing if it was necessary. The appointment was for the surgeon to look to see if I needed my expander filling. The nurse said if I was happy with the size that it was OK to wait till chemo was over. I said I am more then happy and if it was any bigger I would be leaning slightly to the left!
I asked her when I would be having my surgery after the radiotherapy, assuming it would be around a month. She told be it would be 6 months to a year. I had no idea it would be that long and was a little disappointed. I thought I would be getting my new boobs by summer. I guess there will be no bikini wearing for me this year. I would have fitted right in with my fake boobs when I go to California as well.
Comments
I had breast cancer 16 years ago, while pregant with my second son Joshua, and wrote about it at www.IAmAtPeaceWithDestiny.com
There are some things I did, and decisions I made that may assist you in giving you options about different things. Also, at the site, are a lot of links with great info that has helped a lot of people. Please, feel free to contact me anytime. 615.720.2646 IAMOPULENCE@gmail.com
Both my boys had bone cancer (after they turned 13), my oldest, now 18, is still going through treatment for a recurrence and his brother passed on a few months ago, at 16 a year after a recurrence..
Angels be with you :-).
God Bless You for a Miracle Day!!!
Teresa Marie Katherine Angelica Rose :-)
Follow Your Bliss!!!
x x x
Ps. I spoke to Daisy today she said she had been following your blog.
I was so worried about them removing it, me being a wimp, but I sat with you and you were fine. Hey don't you think I was brave I even watched it? xxxx
(Obviously the pain was far far worse when they originally put it in in Brighton and I was expecting the same!)
Well now I have seen the chemo unit in Leicester ........ and it was just as you had described but sort of worse. So many people everywhere - nowhere to seat- no curtains giving you any privacy and as you said nowhere for your partner or mum or whoever to seat with you whilst going through this shit ordeal!
I had been told Leicester had a brilliant cancer unit - maybe so - but from whose point of view - research- certainly not the from the patient.
Maybe it's cos youre not old enough Em - you're young - young people get cancer - you are at that stupid in between age - like when you were 12years old going to the red cross ball and nowhere catered for that age in dresses - now they dont cater for young people with cancer!!!!
What is wrong with this bloody country - spending so much money on the iraq war and not caring for are our young people like you.
Something good will come out of this - not sure what it will be right now - but it's sure got to happen!!!
Thank you for the dance in the kitchen tonight - it was just what I needed to vent my anger. Huh it shouldnt be me that's angry!
I love you - cannot bear to see you in pain - you WILL get better - and then l'll make you have one more dance with me and then you can bugger off abroad! I'll make you a pack up of your favourite soup (the one you dreamed of!) and give you a spotted hankerchief on a stick with maybe 50p in and say bye bye ...... loveyar ......
I came across your blog by accident on Facebook and had to read it. I'm sorry that you have had to go through all this aswell. I was diagnosed with breast cancer back in October last year. It was a complete shock as my consultant said he was 99% sure it was just hard tissue and i shouldn't worry. After biopsys, scans etc i was told i had early stage bc (DCIS with microscopic invasion. Not to bad then just a lumpectomy and off you go- he said. This wasn't to be as i was then told after an mri scan that i needed a masectomy. So after getting my head round that one,i tried to look on the bright side and looked forward to getting a free boob job. I had to wait 7 weeks for an operation which seemed way to long but was reassured by my consultant that it was early stages, nothing to worry about. After the op i had to wait another 6 weeks for the results from that and was then told it had spread to my lymph nodes! Great news!. I am being given a date tomorrow for when my chemo starts. I also have to take tamoxifen and Herceptin and radiotherapy. I am freaked out about losing my hair and might try the coldcap - did you?
All my friends say that i am coping brilliantly and look great. Inside i just feel numb and angry. Like you i am young (37) and a free spirit (2 children). I also hope to have a fullfilling and exciting relationship but confidence doesn't come easy with wonky boobs and no hair! However i am positive and can't wait for the next few months to be over with. Your blog is vey inspiring and i'm sorry for waffling on and i wish you well.
I am on facebook if you want to chat (Krista Grindley)