I had to call on my lovely friend who took me for the bone scan today as GG wasn't available for transport. We met outside school after dropping the children and arrived at the hospital early.
There were loads of people waiting so I thought I'd be in for a long haul but I was called before all of them and was treated immediately, still in the blue room (it's a bit cold in there). I was placed on the machine really quickly and the treatment was over in a flash today.
I was given my hours for next week and they've only scheduled 4 sessions instead of 5. I shall have to call them to ask why and to change Thursday to afternoon not morning so I can double up and do my dr appointment after the treatment, otherwise it's another appointment on Saturday morning which is a bummer. All this is a lot about organisation, every day organising this and that, remembering to take the homeopathic medication before and after, put the cream on, dr, transport, hours, school, husband, children. I am very tired today and my breast hurts again inside.
Anyway I had an orange juice in the hospital cafe with my friend and she took me back home.
Today I'm grateful to my friend for being so kind as to take 90mins out of her day to drop me, offer to wait and take me home. It was much less lonely being able to chat to her and have a drink afterwards. It was a nicer experience.
Friday, 22 November 2013
Radiotherapy # 4, 29 to go
A rainy day meant we arrived just in time. No need to stress as the machine was out of order. I overheard a manipulator telling a fellow patient that they'd left a message for him not to come as they couldn't administer a treatment. I must have groaned out loud as she looked at me and said 'it's ok we can take you on the other machine'. So, I waited and eventually they called me up into the blue room instead of the yellow room and placed me on the machine.
It took ages for them to get me in the correct position on the machine and consulted with their colleagues. I was glad that they took so long to get it right and didn't just think 'oh fuck it, it's about right, let's push the button and get it over with'.
Anyway it was a really long session and my left arm and shoulder really hurt afterwards as I was in position so long.
I then saw the doctor who was just checking in as to how I was doing. I said it was weird having a therapy where you couldn't feel anything. She said 'yes, you said the same thing last week!' Well, I said, it must still be weird alors. She said but you must be feeling something and I explained what I was feeling, electric shocks in my breast and painful and thickening and heat in the breast. She said it was all normal.
She also reassured me that the rays should not touch my heart, maybe touch my lungs but not much and they were not dangerous if they were touched a bit. Hmmm, hope not.
Then GG took me home. He was on time today and didn't depress me with his cancer stories but he did tell me about his time on Prozac. Man that guy really needs to see a psychologist!
Today I am grateful for the help of the pharamacy who helped me locate the reccomended soap that is non agressive to the skin and means that the skin has no chemicals on it before the treatment begins, thus helping to avoid burns (photo below). I mentioned that I really liked a particular brand - Bio by Nuxe (they were advertising it on the counter) so the pharmacian gave me some testers for other products by Nuxe which I'm looking forward to trying.
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It took ages for them to get me in the correct position on the machine and consulted with their colleagues. I was glad that they took so long to get it right and didn't just think 'oh fuck it, it's about right, let's push the button and get it over with'.
Anyway it was a really long session and my left arm and shoulder really hurt afterwards as I was in position so long.
I then saw the doctor who was just checking in as to how I was doing. I said it was weird having a therapy where you couldn't feel anything. She said 'yes, you said the same thing last week!' Well, I said, it must still be weird alors. She said but you must be feeling something and I explained what I was feeling, electric shocks in my breast and painful and thickening and heat in the breast. She said it was all normal.
She also reassured me that the rays should not touch my heart, maybe touch my lungs but not much and they were not dangerous if they were touched a bit. Hmmm, hope not.
Then GG took me home. He was on time today and didn't depress me with his cancer stories but he did tell me about his time on Prozac. Man that guy really needs to see a psychologist!
Today I am grateful for the help of the pharamacy who helped me locate the reccomended soap that is non agressive to the skin and means that the skin has no chemicals on it before the treatment begins, thus helping to avoid burns (photo below). I mentioned that I really liked a particular brand - Bio by Nuxe (they were advertising it on the counter) so the pharmacian gave me some testers for other products by Nuxe which I'm looking forward to trying.
Wednesday, 20 November 2013
Radiotherapy # 3, 30 to go
I'm peed off today. The taxi was 45 mins late. GG said he was stuck in traffic but the roads didn't seem difficult on the way to the hospital.....Anyway he said sorry, it's done with.
I don't like the afternoon manipulator team as much as the morning one. When I went into the room, one of the manipulators didn't even turn to say hello and she forgot to put the electrodes on the side of my body for the second phase today.
There was also confusion about my appointment tomorrow which I had changed last week but the change hadn't been noted on the computer. The dr wants to see me every week on a Thursday so I have to go late, do the treatment then wait to see her. If I can't see her, I have to make an appointment for Saturday morning in another hospital to see her on a weekly basis; No way, I am not taking medical appointments on yet another day of the week, enough already with 5.
I also asked about a few things that were worrying me - I seem to have electric shock type pains in my breast and it was painful to put the cream on last night, so much that I took a painkiller and my throat hurts and my voice is hoarse. I wanted to know if this was normal just 2 sessions into the treatment (surely not) or if this is something else. That's the problem when you're doing a treatment like this that you can't see; you don't really know what's causing what. Anyhow, the manipulator just said 'ask the doctor', whereas the morning team had indicated that they are the link to the doctor and I should tell them anything I need to.
Also because of the delayed appointment, dh was obliged to ask a neigbour to look after Loic so he could take my other son swimming. So it was a bit of a crappy session. Also, I was thinking about the session all day. I'd much prefer the morning sessions to the evening.
The thing I'm grateful for today is our neigbours who looked after Loic without hesitation and urged me to ask them if and when I needed them.
I don't like the afternoon manipulator team as much as the morning one. When I went into the room, one of the manipulators didn't even turn to say hello and she forgot to put the electrodes on the side of my body for the second phase today.
There was also confusion about my appointment tomorrow which I had changed last week but the change hadn't been noted on the computer. The dr wants to see me every week on a Thursday so I have to go late, do the treatment then wait to see her. If I can't see her, I have to make an appointment for Saturday morning in another hospital to see her on a weekly basis; No way, I am not taking medical appointments on yet another day of the week, enough already with 5.
I also asked about a few things that were worrying me - I seem to have electric shock type pains in my breast and it was painful to put the cream on last night, so much that I took a painkiller and my throat hurts and my voice is hoarse. I wanted to know if this was normal just 2 sessions into the treatment (surely not) or if this is something else. That's the problem when you're doing a treatment like this that you can't see; you don't really know what's causing what. Anyhow, the manipulator just said 'ask the doctor', whereas the morning team had indicated that they are the link to the doctor and I should tell them anything I need to.
Also because of the delayed appointment, dh was obliged to ask a neigbour to look after Loic so he could take my other son swimming. So it was a bit of a crappy session. Also, I was thinking about the session all day. I'd much prefer the morning sessions to the evening.
The thing I'm grateful for today is our neigbours who looked after Loic without hesitation and urged me to ask them if and when I needed them.
Tuesday, 19 November 2013
Radiotherapy # 2, 31 to go
Seen quickly. Electrodes measuring the dose are just during the first week to check things out. Still weird and a bit frightening with the big machine so near the face and the bed so high up. I have to put cream called Dexeryl on the area a few hours after the treatment and wash the cream off in the shower the next day before the next treatment.
I am struck by the politeness and gentleness of everyone in the oncology wing - everyone in the waiting room says hello and goodbye to each other and smiles, a small way of acknowledging that we'd all really rather be doing something else but here we are anyway so we might as well smile and wish each other a good day. There is a certian complicity in cancer; we are all in the same boat more or less after all.
Today I am grateful for the lady who brings the tea trolley and serves a nice mint tea and the fellow patient who gave me her biscuit allocation when she heard me say that I hadn't eaten breakfast yet.
I am struck by the politeness and gentleness of everyone in the oncology wing - everyone in the waiting room says hello and goodbye to each other and smiles, a small way of acknowledging that we'd all really rather be doing something else but here we are anyway so we might as well smile and wish each other a good day. There is a certian complicity in cancer; we are all in the same boat more or less after all.
Today I am grateful for the lady who brings the tea trolley and serves a nice mint tea and the fellow patient who gave me her biscuit allocation when she heard me say that I hadn't eaten breakfast yet.
Radiotherapy #1, 32 to go
So the taxi arrived on time, we arrived early at the hospital. I was seen almost immediately, just in time to see St L arriving to support me for this milestone morning.
My photo was taken for the files so I can be recognised by all of the staff. It's interesting that they ask me every time for my personal details, name, address, date of birth. I wondered if there were perhaps imposters who penetrated the oncology wing and impersonated people to get a dose of radiotherapy just for kicks!
The session began with a new thing - I had electrodes taped to my upper breast then on the side to check the amount of dose I was getting so the only way I knew I was in the treatment phase is that the electrodes were taped on then taped to the side, so the treatment is in two short phases. They also took more x rays to check the area because of my 'generous' breast area. What they really mean is the chunk of fat on my back but they are too polite to say so!
When I'm feeling uncomfortable or upset or anxious, I realise that quite frequently I feel angry with the person who is giving me the test or treatment and although I'm not rude, I feel antipithy towards them. Today I started feeling like this but suddenly half way through the treatment I just felt really grateful for them for being so nice and trying to put me at ease and do a good job. I hope I can continue the next 32 times to feel like that, it was a nicer feeling than fear or anger.
I didn't feel anything when the treatment was taking place. No particular noise, no heat, nothing. I find it very bizzare that it's totally invisible and soundless, it's still a bit creepy to me.
I had chance to chat to St L in the waiting room for a bit and we made our way upstairs. My taxi took me home and for a 9h30 appointment I was home at 10h30. It was good to have a chat afterwards, I think I'd have felt a bit 'flat' and alone if she hadn't been there.
Gaston Garrolous the taxi driver kept me entertained with his stories on the way home.
When I got home I did have some little electric shock feelings in my treated breast, more than usual but I'm not sure it was about the radiotherapy. I took it easy for the rest of the day.
Taking a leaf out of my friend's FB countdown to Thanksgiving posts, I've decided to find something each day that I'm grateful for, trying to keep it up for the duration of the treatment.
Today there are lots of things. I'm grateful for:-
The company of St L this morning
For a taxi driver who arrived on time and is very pleasant and kind
For the care and attention of the manipulators whilst I was on the table and their discretion
For the fact that I'm not the driver's 42yr old patient with an inoperable brain tumour who is going to die of cancer
My photo was taken for the files so I can be recognised by all of the staff. It's interesting that they ask me every time for my personal details, name, address, date of birth. I wondered if there were perhaps imposters who penetrated the oncology wing and impersonated people to get a dose of radiotherapy just for kicks!
The session began with a new thing - I had electrodes taped to my upper breast then on the side to check the amount of dose I was getting so the only way I knew I was in the treatment phase is that the electrodes were taped on then taped to the side, so the treatment is in two short phases. They also took more x rays to check the area because of my 'generous' breast area. What they really mean is the chunk of fat on my back but they are too polite to say so!
When I'm feeling uncomfortable or upset or anxious, I realise that quite frequently I feel angry with the person who is giving me the test or treatment and although I'm not rude, I feel antipithy towards them. Today I started feeling like this but suddenly half way through the treatment I just felt really grateful for them for being so nice and trying to put me at ease and do a good job. I hope I can continue the next 32 times to feel like that, it was a nicer feeling than fear or anger.
I didn't feel anything when the treatment was taking place. No particular noise, no heat, nothing. I find it very bizzare that it's totally invisible and soundless, it's still a bit creepy to me.
I had chance to chat to St L in the waiting room for a bit and we made our way upstairs. My taxi took me home and for a 9h30 appointment I was home at 10h30. It was good to have a chat afterwards, I think I'd have felt a bit 'flat' and alone if she hadn't been there.
Gaston Garrolous the taxi driver kept me entertained with his stories on the way home.
When I got home I did have some little electric shock feelings in my treated breast, more than usual but I'm not sure it was about the radiotherapy. I took it easy for the rest of the day.
Taking a leaf out of my friend's FB countdown to Thanksgiving posts, I've decided to find something each day that I'm grateful for, trying to keep it up for the duration of the treatment.
Today there are lots of things. I'm grateful for:-
The company of St L this morning
For a taxi driver who arrived on time and is very pleasant and kind
For the care and attention of the manipulators whilst I was on the table and their discretion
For the fact that I'm not the driver's 42yr old patient with an inoperable brain tumour who is going to die of cancer
Saturday, 16 November 2013
How not to say the wrong thing
http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407
This is very excellent advice from the Los Angeles Times through the blog 'Cancer is not a Gift', for those who find themselves with a friend or relative who is ill. The rule is comfort IN dump OUT.
I wish certain people had read this and taken note before dumping IN!!
This is very excellent advice from the Los Angeles Times through the blog 'Cancer is not a Gift', for those who find themselves with a friend or relative who is ill. The rule is comfort IN dump OUT.
I wish certain people had read this and taken note before dumping IN!!
Free free it's all free!
Speaking to an American colleague, who is very supportive and always wants to find the bright side of everything, we were discussing the health systems in UK, France and US. He made me remember this:-
On Thursday
I saw a psychologist for free
I was taken by taxi from her office to the hospital, free
I was looked after by the manipulators finding the correct position for me for half an hour, for free
I had an appointment with the oncology radiation specialist, free
I had a free cup of tea from the nice lady with the tea trolley
I was taken home in a free taxi by a driver who had been waiting for me
There is no money exchanged for any of these exams and services, no need to use the health plan. If you have cancer, everything is taken care of 100%. This was enormously reassuring once we were forced to embark on this sad adventure.
Just a small example but it costs 14€ for me to get to and from the hospital (one bus, one stop on the train, one bus so 3 tickets) and if you multiply that by 36 times, that's quite a cost considering that my ability to work has already been vastly reduced, thus my earnings. And this is just one of the costs involved.
I know the French health system is on the edge in terms of funding and the President is having to bring in some very unpopular reforms to pay for it, but just right now I am very glad it exists and it's supporting me and helping me to hang on in there.
So, thank you France!
On Thursday
I saw a psychologist for free
I was taken by taxi from her office to the hospital, free
I was looked after by the manipulators finding the correct position for me for half an hour, for free
I had an appointment with the oncology radiation specialist, free
I had a free cup of tea from the nice lady with the tea trolley
I was taken home in a free taxi by a driver who had been waiting for me
There is no money exchanged for any of these exams and services, no need to use the health plan. If you have cancer, everything is taken care of 100%. This was enormously reassuring once we were forced to embark on this sad adventure.
Just a small example but it costs 14€ for me to get to and from the hospital (one bus, one stop on the train, one bus so 3 tickets) and if you multiply that by 36 times, that's quite a cost considering that my ability to work has already been vastly reduced, thus my earnings. And this is just one of the costs involved.
I know the French health system is on the edge in terms of funding and the President is having to bring in some very unpopular reforms to pay for it, but just right now I am very glad it exists and it's supporting me and helping me to hang on in there.
So, thank you France!
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