31.1.14
Im so grateful to be feeling a lot better. Still tired, but on the way back up. I find if i talk too much i get tired. Ok, ok, i hear you - shut up then. Still feel a little bit spacey, and headachy, but i don't care about that, i can cope.
My main issue is food!!! No change there then. Im hoping now I've finished my steroids for this cycle of chemo, i will stop feeling the need to eat anything that isn't screwed down.
Do you know what i did last night? Of course you don't, so that gives me the opportunity to tell you.
Well it started yesterday morning. I got in from work at 8.30am and had what has become my regular breakfast of bacon, scrambled eggs and beans. I sat there all morning, doing what i do best, playing games on the laptop, chatting with friends online and answering txts and phone calls. I tried to think about what i actually fancied to eat. My taste buds have diminished somewhat and i feel theres a lot of things i can't stomach at the moment. An ad came on the tv - burger and chips. My eyes nearly popped out of my head! I looked like Popeye with a thyroid problem. I haven't eaten a McD's for years. But in the words of Kylie, 'I just can't get you outta my head!'
I carried on the day as 'normal', i had lunch, i had some pineapple, a cube of jelly for my nails, and then on my way to work, i stopped off at McD's. Quarterpounder and fries. Oh it was heavenly. Didn't taste of anything, but it hit the spot. I sat in Halfords carpark and wolfed it down like id not eaten in years. Well technically, i hadn't eaten a McD's in years!
So just had my last cooked brekky for now. Its time to behave. I will be incorporating fruit today, as i usually do.
Onwards and upwards.
Friday 31 January 2014
Thursday 30 January 2014
30.1.14
Good morning, and i mean GOOD.
Feeling so much better today. I have a couple of niggles which I'm gonna bore your with, but on the whole I'm feeling better.
First of all.... the word positive is starting to feel like a negative. It feels like a pressure that i have to adhere to, and its not supposed to be. So I'm gonna change it!
I thought empowered - to give authority or power to do something, or optimistic - hopeful and confident about the future.
Ill go with empowered for now and hope to move to optimistic further down the line.
All my support friends on the HL site empower me. They've been there, and some are still there and going through the same as me, so they understand and can empathise well and truly. I hope i can be an equally good empowerer as i get further along my journey.
Linda empowers me. Its nice she's there. She lets me talk or cry or laugh, and she lets me do what i want to do, although i still haven't talked her into rubbing my feet!
Linzi's empowered me with her stories of her own journey. She bought me ginger too and chocolate. Strangely I've not felt sick as yet so not needed the ginger, and I've had no cravings for chocolate at all. Thats very very strange, cos I'm a chocoholic. Im sure it will be back, maybe next week. In the meantime i will hide the chocolate so nobody nicks it!
Rochelle who also has her own ongoing battle has been wonderful. I was friends with her when i was about 17 - 18 and we lost contact until the last year or so. Its nice to be friends again. She gives me lots of advice and we laugh about silly things. She's amazing. She is an inspiration. Her battle is huge and ongoing. Possibly life long. And she is so empowered as well as empowering. Never have i seen her down.
Lots of friends have made offers of help and send me messages. It really helps to know they're there.
Lots of people on FB have got in contact that i haven't spoken to for a while. Thats nice. It reminds you of things in your past, gives you food for thought.
And of course my blog is empowering to me.
My other niggles are as follows:-
I have indigestion, not desperately bad, but irritating, so I've taken to chewing on orange flavoured tabs which seem to help a bit.
I also have a strange tongue!! No rude comments from the cheap seats, thank you very much. It feels like I've been sucking an ice lolly. I suppose the word I'm looking for is numb, comfortably numb.
And i don't wish to talk about such matters, but feel its important to put it all out there. Constipation. Caused by the anti emetic (anti sickness) drug that i had, steroids and chemo. A triple whammy delight. But the least of my problems.
I have become intolerant - yes, even more than i already was!!! I keep turning the radio over if the DJ's keep repeating the same story, and Jeremy Kyle is a no no at the mo. All the shouting! I can't cope with it.
Now I've told you I've gone off chocolate. Well its also coffee. I find it difficult to think about what i fancy to eat. So Sam (middle son) is constantly nipping to the supermarket, bless him. My weakness at the moment is bacon, scrambled eggs (well cooked cos we shouldn't be eating runny eggs apparently) and baked beans. Im hoping its just the steroids doing it, but its very disconcerting. Im morphing into a different person. Wonder who I'll be in 6 months?
Good morning, and i mean GOOD.
Feeling so much better today. I have a couple of niggles which I'm gonna bore your with, but on the whole I'm feeling better.
First of all.... the word positive is starting to feel like a negative. It feels like a pressure that i have to adhere to, and its not supposed to be. So I'm gonna change it!
I thought empowered - to give authority or power to do something, or optimistic - hopeful and confident about the future.
Ill go with empowered for now and hope to move to optimistic further down the line.
All my support friends on the HL site empower me. They've been there, and some are still there and going through the same as me, so they understand and can empathise well and truly. I hope i can be an equally good empowerer as i get further along my journey.
Linda empowers me. Its nice she's there. She lets me talk or cry or laugh, and she lets me do what i want to do, although i still haven't talked her into rubbing my feet!
Linzi's empowered me with her stories of her own journey. She bought me ginger too and chocolate. Strangely I've not felt sick as yet so not needed the ginger, and I've had no cravings for chocolate at all. Thats very very strange, cos I'm a chocoholic. Im sure it will be back, maybe next week. In the meantime i will hide the chocolate so nobody nicks it!
Rochelle who also has her own ongoing battle has been wonderful. I was friends with her when i was about 17 - 18 and we lost contact until the last year or so. Its nice to be friends again. She gives me lots of advice and we laugh about silly things. She's amazing. She is an inspiration. Her battle is huge and ongoing. Possibly life long. And she is so empowered as well as empowering. Never have i seen her down.
Lots of friends have made offers of help and send me messages. It really helps to know they're there.
Lots of people on FB have got in contact that i haven't spoken to for a while. Thats nice. It reminds you of things in your past, gives you food for thought.
And of course my blog is empowering to me.
My other niggles are as follows:-
I have indigestion, not desperately bad, but irritating, so I've taken to chewing on orange flavoured tabs which seem to help a bit.
I also have a strange tongue!! No rude comments from the cheap seats, thank you very much. It feels like I've been sucking an ice lolly. I suppose the word I'm looking for is numb, comfortably numb.
And i don't wish to talk about such matters, but feel its important to put it all out there. Constipation. Caused by the anti emetic (anti sickness) drug that i had, steroids and chemo. A triple whammy delight. But the least of my problems.
I have become intolerant - yes, even more than i already was!!! I keep turning the radio over if the DJ's keep repeating the same story, and Jeremy Kyle is a no no at the mo. All the shouting! I can't cope with it.
Now I've told you I've gone off chocolate. Well its also coffee. I find it difficult to think about what i fancy to eat. So Sam (middle son) is constantly nipping to the supermarket, bless him. My weakness at the moment is bacon, scrambled eggs (well cooked cos we shouldn't be eating runny eggs apparently) and baked beans. Im hoping its just the steroids doing it, but its very disconcerting. Im morphing into a different person. Wonder who I'll be in 6 months?
Wednesday 29 January 2014
29.1.14
I didn't wanna do this!
This is my blog - someone going through the battle of fighting cancer. I wanted it to be positive and fun so that anyone else that finds themselves in the same situation as me would feel positive and see it can be ok.
I feel i would be doing a disservice to everyone if i didn't tell them about how I'm feeling today.
Shit! Excuse the french but thats how i feel.
Yesterday i felt rotten from the chemo, last night i slept better and woke feeling a bit more upbeat. I came home from work this morning and all was well. I walked the dogs, fed them. And then i cooked myself bacon, beans and scrambled eggs. Damn you hunger making steroids!!!
Sat and played games on my laptop before heading upstairs for a bath and hair wash before seeing me Linda. Then it hit me! What hit me exactly I'm not sure, but i cried, and i cried. I stopped and then started again. For no reason that i was aware of, it wasn't even about the war going on in my body.
I got in the bath and cried a bit more. The landline rang and someone left a message so i got out and went to investigate. It was the PET scan department booking in my scan after my 4th dose of chemo. 26th March. I'll only have 8 more doses after that!
Im ok now, i think. I went on the HL support site on FB and typed in 'is it normal to be tearful at this stage?' A barrage of responses came shooting in offering advice, sympathy, even a video of Lizzie singing 'These boots are made for kicking'. What a wonderful bunch of people. They're like snipers waiting to shoot any negativity away.
So what does this prove? It proves that no matter how strong I am, how positive I am, I am allowed to feel down, to cry. Im human. An if anyone reads this, and if anyone is going through a similar battle, its ok, and it is gonna happen. They don't all describe it as a roller coaster for nothing.
Im gonna go kick some ass now! Im gonna have lunch (have you noticed, food is mentioned quite often!), and then me Linda is round for a cup of tea and piece of cake. And I'm gonna fill my head with my usual positivity!
See ya later
I didn't wanna do this!
This is my blog - someone going through the battle of fighting cancer. I wanted it to be positive and fun so that anyone else that finds themselves in the same situation as me would feel positive and see it can be ok.
I feel i would be doing a disservice to everyone if i didn't tell them about how I'm feeling today.
Shit! Excuse the french but thats how i feel.
Yesterday i felt rotten from the chemo, last night i slept better and woke feeling a bit more upbeat. I came home from work this morning and all was well. I walked the dogs, fed them. And then i cooked myself bacon, beans and scrambled eggs. Damn you hunger making steroids!!!
Sat and played games on my laptop before heading upstairs for a bath and hair wash before seeing me Linda. Then it hit me! What hit me exactly I'm not sure, but i cried, and i cried. I stopped and then started again. For no reason that i was aware of, it wasn't even about the war going on in my body.
I got in the bath and cried a bit more. The landline rang and someone left a message so i got out and went to investigate. It was the PET scan department booking in my scan after my 4th dose of chemo. 26th March. I'll only have 8 more doses after that!
Im ok now, i think. I went on the HL support site on FB and typed in 'is it normal to be tearful at this stage?' A barrage of responses came shooting in offering advice, sympathy, even a video of Lizzie singing 'These boots are made for kicking'. What a wonderful bunch of people. They're like snipers waiting to shoot any negativity away.
So what does this prove? It proves that no matter how strong I am, how positive I am, I am allowed to feel down, to cry. Im human. An if anyone reads this, and if anyone is going through a similar battle, its ok, and it is gonna happen. They don't all describe it as a roller coaster for nothing.
Im gonna go kick some ass now! Im gonna have lunch (have you noticed, food is mentioned quite often!), and then me Linda is round for a cup of tea and piece of cake. And I'm gonna fill my head with my usual positivity!
See ya later
Tuesday 28 January 2014
28.1.14
Oh I'm so tired.
Well go to bed and have a nap i hear you all shout. Stop your flipping whinging!
Ive been in bed for 2 and half hours and normally i would just doze off, but no, not today. Its obviously these flipping steroids. Id stop them but they're doing me some good, other than insomnia.
At least i don't feel ill and that is the more important thing.
Luckily the steroids don't stop my mind wandering into a strange land that i would expect someone on LSD to go to.
For example, I walked the dogs round the park this morning. I noticed a lovely bird from afar. I thought it was a jay. It was definitely like a jay but i couldn't see the blue feathers at the top of the wing. My thought was, 'maybe its had chemotherapy!' I do like the fact that my mind is a little 'off the wall', but really i wonder if I'm insane at times.
My other wandering is this. If you shave your head before you're likely to lose your hair from chemo, will anything fall out? Is there like, 2mm of hair that is under your skin that will fall out?
And, what do you wash your head with, soap and water, shower gel, or shampoo? Where do you stop with the cleanser toner and moisturiser on your face? Do you go over the top of your head?
Then of course, theres the eyebrows. Ive watched a couple of tutorials on You Tube. One drew some on a woman who still had her eyebrows. She did the '3 dot technique'. Draw three dots and fill in the line - a bit technical for me. And then theres stencils. The obvious problem is you have to get them symmetrical on your face! And is it obligatory that you do them a lot darker than you should and very stark and pointed? It seems to be the fashion at the mo, and it looks ridiculous. Nearly as ridiculous as what I'm gonna look with no hair! Im really not a Sinead O Connor lookalike. Im more like Telly Savalas!
What I'm really hoping for when the drugs get hold of my follicles, is that they manage to grab the bikini line follicles, the underarm follicles and the full leg follicles. That will save me some time, effort, and some pain.
Now here is the sensitive bit..........moustache and beard! Mother Nature is a wicked wicked witch really. She lets us gals go through periods, PMT, child bearing, the change and then she lets us turn into men! Hairs in places we should never have hairs. A moustache and little goatee. I, of course, don't have any of these strategically placed hairs!!! But if i did, and if they fell out, do they sell stencils on Amazon to draw them back on? Think on, and look smart!
Monday 27 January 2014
28.1.14
Little prick!
In this instance i must agree that size matters. I would rather have a little prick than a big prick when having a cannula fitted.
I apologise for my smutty innuendo, but thats what i do. Its not meant to offend, its meant to make people smile. I like to see the funny side of things.
Well, its nearly 2am and I'm wide awake. I blame the steroids and I'm aware i have another 4 days of them. I will have to take everything a bit easy over the next few days, if not the next few months.
One of my new lymphoma friends who had her first chemo on friday told me she felt her blood sugar dropping had caused her to become nauseous , so I'm here, wide awake, writing a blog, eating digestives. I don't feel nauseous but i think it only right i protect myself! The only problem is crumbs! Digestives are quite crunchy beggars and i know I'm gonna roll over in a bit and feel like I'm laying on broken glass. In the grand scheme of things, i suppose thats not a huge problem.
Anyway, more important matters.
Ive done it. Ive had my first chemo. Let me tell you about it.
We arrived at the hospital at 11.30 and was greeted by a lovely nurse called Laura who was gonna administer my drugs. I say we, it was me and the lovely Linda.
She settled me in and asked me questions. Then i waited for the haematologist, Dr Jack to arrive with more info for me and a consent form. His first bit of info was not what i was hoping for. The PET scan shows the lymphoma has spread to both sides of my pelvis, higher up in my peritoneum, (the lining of the abdominal cavity), and to my spleen. I still remain a grade 2a, but it means i will be having 12 sessions of chemo over 6 months, instead of 6 sessions over 3 months. And no radiotherapy as the area is a lot larger than thought. Bummer! But some people have it far worse than that. So pick myself up and get on with it.
He chatted about so much other stuff.
1. Don't worry too much about germs, were all a bag of germs. Just don't mix with people with hacking coughs, or infections. Any temperature and i should ring the unit and discuss with the nurses who will advise.
2. He told me alcohol was ok but don't go getting 'trollied'. I believe that is a medical term!!
3. No to the dentist and hygienist. Wait till all the chemo is over. Now that is a shame. I shall have to cancel this fridays appointment!!! A silver lining, me thinks.
4. No to any sugaring (hair removal). It opens the pores so could lead to bacteria entering the body and causing an infection. He said don't worry cos you'll probably lose most of your hair anyway!
5. He commented on my head hair loss and i told him i had bought myself a wig. He was keen to question my choice of colour. I think he's picked up on my personality already cos he asked if it were bright pink!
6. Id heard i couldn't have any massages cos of the lymph being pushed round the body and possibly spreading. He said he didn't have a problem with it, but he felt he didn't like the thought of someones hands all over his body! What a strange response. I wasn't expecting that. However i will be giving a massage a miss. You gotta be careful at times like this!
There was so much other stuff, but its overload at that moment. More will come to me as time goes on, I'm sure. He's a nice man. Obviously very clever, and very funny. And just a little bit cheeky. He got me to sign a consent form. Actually, he signed it for me himself and then had to cross it out and get me to do it! Bless him. Maybe a little absentminded too. He had a little joke with us and then left us to it.
Laura returned and this is where the little prick comes into it. I was all 'cannulad up' (thats not a proper word by the way, but i like it), and normal saline was left to steadily drip into the vein that Laura felt was her favourite.
Lunch arrived. Roast pork. It was ok, i was very hungry at that time!
Then back to the drugs.
I was given some Hydrocortisone. This is to relieve any inflammation i may have from the chemo, prevent allergic reactions, to help with nausea and vomiting, to stimulate appetite in cancer patients. I think, and i could be mistaken, this is the drug that gave me the feeling of 'ants in my pants'. Another medical term! It was a weird feeling where everything in the underpants department was very very itchy! Not horrid, just a bit weird. It does however have some side effects which i won't go into other than to say, it can cause insomnia!!! Oh yes, so it can!!!
Then i had an injection of an anti-emetic (anti sickness drug). A fairly strong one was given which should cover me for a couple of days, which was nice! Then back onto the saline whilst the stronger drugs were prepared.
Now it begins - Doxorubicin - bright red in colour and causes your wee to be bright red, don't panic!
Bleomycin was next, Vinblastine, and then an infusion of Dacarbazine over 2 hours, a quick flush with normal saline again, i was finished.
None of this caused me any real pain or discomfort. I think it could for some people, but it was fine for me. It could be a little boring sitting there for a few hours, but i had my Linda.
Linda is my bestie! She has lovingly offered to come with me for EVERYTHING. Scans, lung tests, chemo, consultations. She is what is known in the trade as 'a rock'. Luckily we get on like a house on fire, and spend many an hour chatting and laughing. And today was no different.
I have nicknamed her my chemo slave, and i feel it only right that i use her in that capacity. She got me drinks, turned the tv on, passed me things when i need them, unwrapped sugar free polos and starbursts after finding me the red ones. She hasn't yet rubbed my feet, but I'm working on it!
I was very glad she was there. We laughed about so much. The seagulls flying outside which i renamed vultures, she photographed them. The unwrapping of the red starbursts. She even laughed when i told Laura i had saved her from a life of prostitution and drug taking many years ago. I don't know where that came from, but its not strictly true. We met when our children started school. Enough to make anyone take drugs!
So heres a photo of my chemo slave. Isn't she lovely?
Im sure you realise I'm joking about Linda. I can't thank her enough. She makes it all a bit easier for me. And if ever she needs me for anything, ill be there, as long as theres nothing good on tv.
Anyway, that was it. I was de-cannulaised (another made up word), and set free. We got home and had a cup of tea and a piece of cake and then Linda left me in the capable hands of my middle son, and favourite (i gotta say that) Sam.
I spent the rest of the evening (we didn't leave till 5pm), watching tv with Sam making me a hot water bottle, turning lights off for me, sorting the dogs, and generally being slave number 2. Bless him.
I normally go to Rock Choir on a monday night, but felt i didn't want to push it. I need to pace myself (she said, writing a blog at 3am!). So my lovely Rock Choir buddy Jenni recorded a little of the choir singing Adele's, 'Someone like you' for me with her own little rendition of the chorus at the end of it, and sent it to me. At that stage, I had started to 'come down' a little. I was feeling a little exhausted and had the occasional very mild feeling of nausea (thats where the eating of the digestives came in to force). So to receive that audio message made me laugh so loud, i nearly had the 'ants in my pants' feeling again. Then i cried, not sure what for. But i played it again, and laughed, and recovered from the tears. I think that was allowed. Its been an emotional, fun filled, frightening, unnecessarily frightening, day. And i think i will allow myself a team point for getting through it.
Now i think its time for me to attempt some shut eye. Time to roll over onto the digestive crumbs.
Thanks for listening to my ramblings, people. I hope you enjoy reading it as much as i enjoyed writing it.
Little prick!
In this instance i must agree that size matters. I would rather have a little prick than a big prick when having a cannula fitted.
I apologise for my smutty innuendo, but thats what i do. Its not meant to offend, its meant to make people smile. I like to see the funny side of things.
Well, its nearly 2am and I'm wide awake. I blame the steroids and I'm aware i have another 4 days of them. I will have to take everything a bit easy over the next few days, if not the next few months.
One of my new lymphoma friends who had her first chemo on friday told me she felt her blood sugar dropping had caused her to become nauseous , so I'm here, wide awake, writing a blog, eating digestives. I don't feel nauseous but i think it only right i protect myself! The only problem is crumbs! Digestives are quite crunchy beggars and i know I'm gonna roll over in a bit and feel like I'm laying on broken glass. In the grand scheme of things, i suppose thats not a huge problem.
Anyway, more important matters.
Ive done it. Ive had my first chemo. Let me tell you about it.
We arrived at the hospital at 11.30 and was greeted by a lovely nurse called Laura who was gonna administer my drugs. I say we, it was me and the lovely Linda.
She settled me in and asked me questions. Then i waited for the haematologist, Dr Jack to arrive with more info for me and a consent form. His first bit of info was not what i was hoping for. The PET scan shows the lymphoma has spread to both sides of my pelvis, higher up in my peritoneum, (the lining of the abdominal cavity), and to my spleen. I still remain a grade 2a, but it means i will be having 12 sessions of chemo over 6 months, instead of 6 sessions over 3 months. And no radiotherapy as the area is a lot larger than thought. Bummer! But some people have it far worse than that. So pick myself up and get on with it.
He chatted about so much other stuff.
1. Don't worry too much about germs, were all a bag of germs. Just don't mix with people with hacking coughs, or infections. Any temperature and i should ring the unit and discuss with the nurses who will advise.
2. He told me alcohol was ok but don't go getting 'trollied'. I believe that is a medical term!!
3. No to the dentist and hygienist. Wait till all the chemo is over. Now that is a shame. I shall have to cancel this fridays appointment!!! A silver lining, me thinks.
4. No to any sugaring (hair removal). It opens the pores so could lead to bacteria entering the body and causing an infection. He said don't worry cos you'll probably lose most of your hair anyway!
5. He commented on my head hair loss and i told him i had bought myself a wig. He was keen to question my choice of colour. I think he's picked up on my personality already cos he asked if it were bright pink!
6. Id heard i couldn't have any massages cos of the lymph being pushed round the body and possibly spreading. He said he didn't have a problem with it, but he felt he didn't like the thought of someones hands all over his body! What a strange response. I wasn't expecting that. However i will be giving a massage a miss. You gotta be careful at times like this!
There was so much other stuff, but its overload at that moment. More will come to me as time goes on, I'm sure. He's a nice man. Obviously very clever, and very funny. And just a little bit cheeky. He got me to sign a consent form. Actually, he signed it for me himself and then had to cross it out and get me to do it! Bless him. Maybe a little absentminded too. He had a little joke with us and then left us to it.
Laura returned and this is where the little prick comes into it. I was all 'cannulad up' (thats not a proper word by the way, but i like it), and normal saline was left to steadily drip into the vein that Laura felt was her favourite.
Lunch arrived. Roast pork. It was ok, i was very hungry at that time!
Then back to the drugs.
I was given some Hydrocortisone. This is to relieve any inflammation i may have from the chemo, prevent allergic reactions, to help with nausea and vomiting, to stimulate appetite in cancer patients. I think, and i could be mistaken, this is the drug that gave me the feeling of 'ants in my pants'. Another medical term! It was a weird feeling where everything in the underpants department was very very itchy! Not horrid, just a bit weird. It does however have some side effects which i won't go into other than to say, it can cause insomnia!!! Oh yes, so it can!!!
Then i had an injection of an anti-emetic (anti sickness drug). A fairly strong one was given which should cover me for a couple of days, which was nice! Then back onto the saline whilst the stronger drugs were prepared.
Now it begins - Doxorubicin - bright red in colour and causes your wee to be bright red, don't panic!
Bleomycin was next, Vinblastine, and then an infusion of Dacarbazine over 2 hours, a quick flush with normal saline again, i was finished.
None of this caused me any real pain or discomfort. I think it could for some people, but it was fine for me. It could be a little boring sitting there for a few hours, but i had my Linda.
Linda is my bestie! She has lovingly offered to come with me for EVERYTHING. Scans, lung tests, chemo, consultations. She is what is known in the trade as 'a rock'. Luckily we get on like a house on fire, and spend many an hour chatting and laughing. And today was no different.
I have nicknamed her my chemo slave, and i feel it only right that i use her in that capacity. She got me drinks, turned the tv on, passed me things when i need them, unwrapped sugar free polos and starbursts after finding me the red ones. She hasn't yet rubbed my feet, but I'm working on it!
I was very glad she was there. We laughed about so much. The seagulls flying outside which i renamed vultures, she photographed them. The unwrapping of the red starbursts. She even laughed when i told Laura i had saved her from a life of prostitution and drug taking many years ago. I don't know where that came from, but its not strictly true. We met when our children started school. Enough to make anyone take drugs!
So heres a photo of my chemo slave. Isn't she lovely?
Well we laughed and laughed about so much. It was almost good fun to be there. Im glad we did though. Imagine how worried me Linda must have been. Supporting someone through a rough time like this is not easy. It drags you down, its depressing. Well i don't want it to be like that. If i gotta go through it, and if I'm gonna drag her along with me, then we must make it as positive and have as much fun as we can. However Linda, your abuse of me must stop here! She's so rude to me! I will forgive her though cos she did cut up my roast pork lunch for me. And a couple of times, uninvited, she did push a bit of food about on my plate! Ideas above her station, i believe.
Anyway, that was it. I was de-cannulaised (another made up word), and set free. We got home and had a cup of tea and a piece of cake and then Linda left me in the capable hands of my middle son, and favourite (i gotta say that) Sam.
I spent the rest of the evening (we didn't leave till 5pm), watching tv with Sam making me a hot water bottle, turning lights off for me, sorting the dogs, and generally being slave number 2. Bless him.
I normally go to Rock Choir on a monday night, but felt i didn't want to push it. I need to pace myself (she said, writing a blog at 3am!). So my lovely Rock Choir buddy Jenni recorded a little of the choir singing Adele's, 'Someone like you' for me with her own little rendition of the chorus at the end of it, and sent it to me. At that stage, I had started to 'come down' a little. I was feeling a little exhausted and had the occasional very mild feeling of nausea (thats where the eating of the digestives came in to force). So to receive that audio message made me laugh so loud, i nearly had the 'ants in my pants' feeling again. Then i cried, not sure what for. But i played it again, and laughed, and recovered from the tears. I think that was allowed. Its been an emotional, fun filled, frightening, unnecessarily frightening, day. And i think i will allow myself a team point for getting through it.
Now i think its time for me to attempt some shut eye. Time to roll over onto the digestive crumbs.
Thanks for listening to my ramblings, people. I hope you enjoy reading it as much as i enjoyed writing it.
27.1.14
Having been pumped full of poisonous drugs today, I am feeling fine but shattered. It was so much better than i thought it would be.
Normal service will be resumed tomorrow, unless i get a second wind and find some motivation to write my thoughts and feelings about my chemo and all the laughs and giggles I've had all day with me Linda, chemo slave extroadinaire!
Don't go too far, Ill be right back!!
Having been pumped full of poisonous drugs today, I am feeling fine but shattered. It was so much better than i thought it would be.
Normal service will be resumed tomorrow, unless i get a second wind and find some motivation to write my thoughts and feelings about my chemo and all the laughs and giggles I've had all day with me Linda, chemo slave extroadinaire!
Don't go too far, Ill be right back!!
Sunday 26 January 2014
26.1.14
I am looking forward to my 'last supper'.
Such a drama queen!!! Tomorrow is my first chemo.
Ive had a lovely weekend. Walked the dogs with Linzi saturday morning. Coffee with the girls saturday lunch time. The boyfriend was round saturday night and we went out for dinner. Enjoyed his company at breakfast this morning and then he went home to do some gardening in the pouring rain, and I've had a chill out day since then. Louise called round and is returning later with a plate of roast lamb, saves me cooking, And her cooking is divine! And I've caught up on 'The Voice'. Nothing like a bit of Tom Jones to put a smile on my face.
So how am i feeling about tomorrow?
Not too bad. Id rather not have it done, but as i have no choice ..............there are worse things happen at sea!
I am expecting a cannula, iv drugs, which may be sore, lunch (!), some fun and laughter with me Linda, and lots of information that i won't remember so I'm taking a pad and pen. Then I'm expecting to feel quite exhausted, so an early night for me!
The really nice thing is knowing i have people rooting for me. Its nice to know people care. Texts, phone calls, hugs and some cheeky sarcasm from Pete! Far better than Tom Jones for putting a smile on my face.
I will let you know tomorrow - if I'm not too exhausted - how it goes.
Nighty night peeps xxx
I am looking forward to my 'last supper'.
Such a drama queen!!! Tomorrow is my first chemo.
Ive had a lovely weekend. Walked the dogs with Linzi saturday morning. Coffee with the girls saturday lunch time. The boyfriend was round saturday night and we went out for dinner. Enjoyed his company at breakfast this morning and then he went home to do some gardening in the pouring rain, and I've had a chill out day since then. Louise called round and is returning later with a plate of roast lamb, saves me cooking, And her cooking is divine! And I've caught up on 'The Voice'. Nothing like a bit of Tom Jones to put a smile on my face.
So how am i feeling about tomorrow?
Not too bad. Id rather not have it done, but as i have no choice ..............there are worse things happen at sea!
I am expecting a cannula, iv drugs, which may be sore, lunch (!), some fun and laughter with me Linda, and lots of information that i won't remember so I'm taking a pad and pen. Then I'm expecting to feel quite exhausted, so an early night for me!
The really nice thing is knowing i have people rooting for me. Its nice to know people care. Texts, phone calls, hugs and some cheeky sarcasm from Pete! Far better than Tom Jones for putting a smile on my face.
I will let you know tomorrow - if I'm not too exhausted - how it goes.
Nighty night peeps xxx
Saturday 25 January 2014
25.1.14
Private v NHS
I have no problem with the NHS treatment. I use it most times when i need to. BUT.....i have private insurance. No big fancy la di da insurance which allows me to visit Harley Street and stay in sumptuous hospitals. Its a Trust Care Insurance, which means sometimes you use NHS hospitals, but you may get in quicker. There are a few other benefits but I'm not sure what they are! I have the insurance because I was a carer to my disabled son for many years and it was to ensure i was able to get myself fixed if need be, so i could carry on looking after him. Its worked for about 15 years.
Now i have cancer.
I have been able to get scans etc a little quicker and i have a wonderful Consultant Haematologist, who is also head of haematology at the NHS i will be using for my chemo. So in some way i am lucky to have insurance, but i do have to pay for it.
However imagine my horror when i find I am not allowed help with a wig, free prescriptions, amongst other benefits that NHS patients get.
My argument :-
I pay for private insurance, but i also pay tax and insurance so i pay for NHS.
If i want to have something done on the NHS and not private, i am entitled to.
If i had my scans and chemo on the NHS it would cost the NHS thousands of pounds, and i would have help with my wig!
So going privately, I am saving the NHS thousands of pounds.
I strongly believe in fairness.
Im a little annoyed. I have bought a wig, a cheaper one, so its not about that. Its the principle. I really want to fight and point out this is wrong in my opinion so that other people in my position get the help they need. But I'm not sure after i start chemo that i will have the fight in me.
We will see!
Private v NHS
I have no problem with the NHS treatment. I use it most times when i need to. BUT.....i have private insurance. No big fancy la di da insurance which allows me to visit Harley Street and stay in sumptuous hospitals. Its a Trust Care Insurance, which means sometimes you use NHS hospitals, but you may get in quicker. There are a few other benefits but I'm not sure what they are! I have the insurance because I was a carer to my disabled son for many years and it was to ensure i was able to get myself fixed if need be, so i could carry on looking after him. Its worked for about 15 years.
Now i have cancer.
I have been able to get scans etc a little quicker and i have a wonderful Consultant Haematologist, who is also head of haematology at the NHS i will be using for my chemo. So in some way i am lucky to have insurance, but i do have to pay for it.
However imagine my horror when i find I am not allowed help with a wig, free prescriptions, amongst other benefits that NHS patients get.
My argument :-
I pay for private insurance, but i also pay tax and insurance so i pay for NHS.
If i want to have something done on the NHS and not private, i am entitled to.
If i had my scans and chemo on the NHS it would cost the NHS thousands of pounds, and i would have help with my wig!
So going privately, I am saving the NHS thousands of pounds.
I strongly believe in fairness.
Im a little annoyed. I have bought a wig, a cheaper one, so its not about that. Its the principle. I really want to fight and point out this is wrong in my opinion so that other people in my position get the help they need. But I'm not sure after i start chemo that i will have the fight in me.
We will see!
Friday 24 January 2014
24.1.14
Another day, another test!
Respiratory function tests
This is the one i wasn't worried about, and i was right!
It was weird though. I had to put a mouthpiece on the end of a long pipe in my mouth, a clip on my nose, and blow into the pipe which measured :-
1. How much air I took into my lungs.
2. How much air i could blow out, and how fast.
3. How well my lungs deliver oxygen to my blood.
4. How well gases are absorbed into my blood from my lungs.
The technician told me, with a twinkle in his eye, he was gonna make me huff and puff. And he certainly did that. Talk about bossy.....'breath in, hold it, breath out, a little bit more, and hold it, breath normally. Take a deep breath, as deep as you can and then blow out really fast and hold. Im gonna pump some helium in and i want you to hold your breath.........' and so on and so forth of july!!!
He pumped other gases in and made me hyperventilate.
I had it in my mind i was gonna have to run on a treadmill, so i prepared myself for this by wearing high boots! My logic is this. He takes one look at my boots and says, 'never mind about that bit!' But it was never part of the test. I feel cheated.
He said i was normal!! Something i doubt very much.
It was so traumatic that Linda and I had to go for lunch ........again! Third day in a row i think.
Well thats it for the investigations for the moment.
Monday is CH day. I am invited to Poole General Hospital at 11.30 to start my chemo. Something that I'm not looking forward to, but it has to be done. At the moment i have some cancer in my body that i really don't like being there. The chemo is to kill it, so i will look at it positively.
It may make me feel tired. Oh no, don't say i will have to lay on the sofa in front of This Morning on tv, watching Phillip Schofield, with a quilt and a hot water bottle.
It may make me feel rough, possibly nauseous. I will have anti emetics for the nausea.
More worrying, i may not be able to go to lunch with Linda every day!
Another day, another test!
Respiratory function tests
This is the one i wasn't worried about, and i was right!
It was weird though. I had to put a mouthpiece on the end of a long pipe in my mouth, a clip on my nose, and blow into the pipe which measured :-
1. How much air I took into my lungs.
2. How much air i could blow out, and how fast.
3. How well my lungs deliver oxygen to my blood.
4. How well gases are absorbed into my blood from my lungs.
The technician told me, with a twinkle in his eye, he was gonna make me huff and puff. And he certainly did that. Talk about bossy.....'breath in, hold it, breath out, a little bit more, and hold it, breath normally. Take a deep breath, as deep as you can and then blow out really fast and hold. Im gonna pump some helium in and i want you to hold your breath.........' and so on and so forth of july!!!
He pumped other gases in and made me hyperventilate.
I had it in my mind i was gonna have to run on a treadmill, so i prepared myself for this by wearing high boots! My logic is this. He takes one look at my boots and says, 'never mind about that bit!' But it was never part of the test. I feel cheated.
He said i was normal!! Something i doubt very much.
It was so traumatic that Linda and I had to go for lunch ........again! Third day in a row i think.
Well thats it for the investigations for the moment.
Monday is CH day. I am invited to Poole General Hospital at 11.30 to start my chemo. Something that I'm not looking forward to, but it has to be done. At the moment i have some cancer in my body that i really don't like being there. The chemo is to kill it, so i will look at it positively.
It may make me feel tired. Oh no, don't say i will have to lay on the sofa in front of This Morning on tv, watching Phillip Schofield, with a quilt and a hot water bottle.
It may make me feel rough, possibly nauseous. I will have anti emetics for the nausea.
More worrying, i may not be able to go to lunch with Linda every day!
Thursday 23 January 2014
23.1.14
What a hairy day! Ive had about 4 inches cut off my bonce, and I've bought a wig. Me Linda cut me hair! We had fun. Im surprised I'm not already bald after all the laughing we did whilst she was cutting it! We went and got some lunch and then found the wig shop in Westbourne, Mwah. Nice name! The wig was not what i would have thought id buy for myself, but i love it. I won't be wearing it till I'm bald tho, so you'll have to wait for it to be unveiled. Ive decided she should have a name. I think Rapunzel would be good.
"Rapunzel Rapunzel, let down your hair!"
Wednesday 22 January 2014
23.1.14
Make sure you don't wear metal. Thats what she said when she rang me about having my PET scan.
No zips, no clips and no underwired bras!
Wear a track suit - my one and only track suit has metal toggles, and its about 10 years old. Oh the shame of admitting that! Wear a fleece cos it can be quite cold in the mobile unit - mine has a zip. Even the knickers I'm gonna wear have a metal bead on top of a little bow. Wear a bra without wire - oh dear i don't have one. I lay in the bath wondering what I'm to do.
Light bulb moment! I have a crop top that i wear to the gym.
Make sure you don't wear metal. Thats what she said when she rang me about having my PET scan.
No zips, no clips and no underwired bras!
Wear a track suit - my one and only track suit has metal toggles, and its about 10 years old. Oh the shame of admitting that! Wear a fleece cos it can be quite cold in the mobile unit - mine has a zip. Even the knickers I'm gonna wear have a metal bead on top of a little bow. Wear a bra without wire - oh dear i don't have one. I lay in the bath wondering what I'm to do.
Light bulb moment! I have a crop top that i wear to the gym.
If I'm brutally honest, i should have inserted 'used to' before, 'wear to the gym'! Its seen many an aerobics class......in the past. And the odd zumba class......in the past. When did i ever have time for these classes? These days not only do i not have the inclination or the skeletal ability, i don't have the time.
Anyway, the reason i insert a photo of the said crop top is this. I thought you'd like to see the offending article. It was like a comedy sketch. I pull the plug on the bath and dry myself and attempt to dress myself ready for my scan. I pull the top over my head and push my arms through the armholes Obviously its a well fitted garment used for support. It was all rucked up at the back where i was still slightly warm and damp from the bath. I felt slightly claustrophobic trying to get it on so i pulled it off again. I dried myself a little better this time and attempted it again. If i pull it down at the front first......then...... pull it down at the side......just a little, it should be easier..... I pull and pull, arm up at the back..... just grab the back...its easy, just grab the back....just grab the back for crying out loud, its too high up, i can't reach. I was jumping up and down, shouting at the mirror, 'just pull it down'. Eventually i managed it, but not before i was hot and sweaty and terribly frustrated and frantic. Not a good start to a hospital appointment.
Scan over and done with, I drive to work following my scan. I work night duties and Im lucky enough to sleep at work. I was far too scared to take it off before bed in case i couldn't get it back on in the morning. When i do take it off I'm gonna cut it into ribbons so i don't have to go through that again! So I'm lying here in bed feeling constricted in a crop top. Its 3.50 and I'm fully awake - thats gonna hurt in the morning.
22.1.14
Pah!
Scans! Nothing to be frightened of.
I am the biggest wimp in the world, but i pfft my lips and raise my eyebrows at scans!
The PET scan was a doddle. I arrived at the hospital and a lovely girlie talked me through what was gonna happen. I was taken into an 'office' full of equipment, in a huge mobile unit. I was asked a few questions and signed some forms giving permission for radiation etc, and when i say 'signed some forms', my arm was aching after id finished. I could see the scanner through the window and i felt a lump in my throat. I wanted to run outside and sit with Linda who was lording it up in the waiting room with a bottle of red bull and a magazine!
Adam the technician inserted a cannula in my arm and i never felt a thing. In fact i complimented him on his technique. I always feel a compliment is nice, and it ensures they like you and continue to be nice to you!!
So all ready with my cannula, i very carefully crept through to my comfy chair. For goodness sake, i had a cannula in my arm and yet i looked like i had a renal dialysis machine strapped to me! Drama queen! I made myself comfortable. iPad, magazine, bottle of water, and emergency call button. Adam carried a humorous looking box in with him with a radiation sign on it and removed a metal syringe. All a bit surreal! Then he asked if i was in agreement to him injecting me with a radioactive solution.
Before I knew it, i was glowing like a good 'un!!! Actually i didn't feel a thing, it had no physical effect on me.
I sat for an hour to let the medium travel to all the active parts of my body - most active being my mouth and the finger that types my pin number in on a credit card machine!
I read my iBook, played a game, messaged people on FB, noticed Linda's comment about her needing a wee but couldn't find a non radioactive loo, she always thinks of herself!!! Don't worry about me and my radiation fallout!
Then I was told to go and have a wee on the radioactive loo and then i was called in to the scanner. Climbed on and was covered with a blanket and lay there waiting, waiting, waiting. It seemed like a lifetime, but was about 2 minutes. My hands were raised above my head and then i felt the trolley raise up and then go through the scanner. I closed my eyes. I was worried about claustrophobic feelings. I forced myself to open them to find there really was no problem. I stayed in one position for about 15 minutes while the scanner zoomed me about (exaggeration there!) and then i was catapulted (also exaggeration) out the way i went in! That was it!
I can quite honestly say the most distressing bit was when i was in my comfy chair and the door wouldn't shut properly and the cold was coming in!
The second most distressing bit was trudging round PGH looking for a loo for Linda.
I am now drinking copious amounts of water to flush the radioactivity out of me. And I've been told to flush the loo twice, just to make sure the radioactivity is flushed away!
Another plus - i was given a cd of my scan. Im so desperate to see it but my macbook doesn't read a windows disc!!! I also had strict instructions not to try and diagnose myself!!!
Another mountain climbed today, which turned out to be a molehill!
Pah!
Scans! Nothing to be frightened of.
I am the biggest wimp in the world, but i pfft my lips and raise my eyebrows at scans!
The PET scan was a doddle. I arrived at the hospital and a lovely girlie talked me through what was gonna happen. I was taken into an 'office' full of equipment, in a huge mobile unit. I was asked a few questions and signed some forms giving permission for radiation etc, and when i say 'signed some forms', my arm was aching after id finished. I could see the scanner through the window and i felt a lump in my throat. I wanted to run outside and sit with Linda who was lording it up in the waiting room with a bottle of red bull and a magazine!
Adam the technician inserted a cannula in my arm and i never felt a thing. In fact i complimented him on his technique. I always feel a compliment is nice, and it ensures they like you and continue to be nice to you!!
Before I knew it, i was glowing like a good 'un!!! Actually i didn't feel a thing, it had no physical effect on me.
I sat for an hour to let the medium travel to all the active parts of my body - most active being my mouth and the finger that types my pin number in on a credit card machine!
I read my iBook, played a game, messaged people on FB, noticed Linda's comment about her needing a wee but couldn't find a non radioactive loo, she always thinks of herself!!! Don't worry about me and my radiation fallout!
Then I was told to go and have a wee on the radioactive loo and then i was called in to the scanner. Climbed on and was covered with a blanket and lay there waiting, waiting, waiting. It seemed like a lifetime, but was about 2 minutes. My hands were raised above my head and then i felt the trolley raise up and then go through the scanner. I closed my eyes. I was worried about claustrophobic feelings. I forced myself to open them to find there really was no problem. I stayed in one position for about 15 minutes while the scanner zoomed me about (exaggeration there!) and then i was catapulted (also exaggeration) out the way i went in! That was it!
I can quite honestly say the most distressing bit was when i was in my comfy chair and the door wouldn't shut properly and the cold was coming in!
The second most distressing bit was trudging round PGH looking for a loo for Linda.
I am now drinking copious amounts of water to flush the radioactivity out of me. And I've been told to flush the loo twice, just to make sure the radioactivity is flushed away!
Another plus - i was given a cd of my scan. Im so desperate to see it but my macbook doesn't read a windows disc!!! I also had strict instructions not to try and diagnose myself!!!
Another mountain climbed today, which turned out to be a molehill!
22.1.14
I was out enjoying brekky with Linzi. I say enjoying, i think i will enjoy my imminent PET scan more. How long can you leave breakfast food on a hot plate before it becomes similar to concrete boots, and twice as lethal?
Well, my beautiful white vajazzled iPhone rang. My latest ringtone is 'Happy" by Pharrell Williams, so upbeat. It does what it says on the tin!
Anyway, it was Dr Jack, my haematologist, ringing to tell me my CT scan results. It seems the lymphoma has spread up my iliac chain without any invitation. However, I look on it as a good result, as i had convinced myself i had it in the stomach, bowel and bone! And it could have been far worse. We chatted about wigs and chemo, a welcome break to the thrice baked bacon and sausage. And i am to start my chemo next week.
Why am i excited? Shouldn't i be a gibbering wreck? Ive managed with all the support I'm getting, somehow to turn myself into a positive beacon.
If i could bottle and sell how I'm feeling i would be a very wealthy woman. I know I'm at the start of my journey, but really, my positivity has really helped, so far. Time will tell how long i can stay like this.
Time to prepare for my PET scan. iBooks bought, iPad charged, metal free outfit sorted with extra socks cos the mobile unit can be cold.
I could doze off right now. Last night I had another of those dreams where anxiety about something woke me and stopped me from going back to sleep. I remember eventually working out the problem....... i mustn't stretch both legs at the same time! Whats it all about? I think I've gone round the bend.
But i will save my doze for the hour when i have to sit and rest and let the radioactive glucose whizz round my body ready for 'lights, camera, action'. I hope we don't need a 'Take 2'.
I will be back to blog again about my experience later. You'll recognise me.....i'll be the one with the radioactive glow!
I was out enjoying brekky with Linzi. I say enjoying, i think i will enjoy my imminent PET scan more. How long can you leave breakfast food on a hot plate before it becomes similar to concrete boots, and twice as lethal?
Well, my beautiful white vajazzled iPhone rang. My latest ringtone is 'Happy" by Pharrell Williams, so upbeat. It does what it says on the tin!
Anyway, it was Dr Jack, my haematologist, ringing to tell me my CT scan results. It seems the lymphoma has spread up my iliac chain without any invitation. However, I look on it as a good result, as i had convinced myself i had it in the stomach, bowel and bone! And it could have been far worse. We chatted about wigs and chemo, a welcome break to the thrice baked bacon and sausage. And i am to start my chemo next week.
Why am i excited? Shouldn't i be a gibbering wreck? Ive managed with all the support I'm getting, somehow to turn myself into a positive beacon.
If i could bottle and sell how I'm feeling i would be a very wealthy woman. I know I'm at the start of my journey, but really, my positivity has really helped, so far. Time will tell how long i can stay like this.
Time to prepare for my PET scan. iBooks bought, iPad charged, metal free outfit sorted with extra socks cos the mobile unit can be cold.
I could doze off right now. Last night I had another of those dreams where anxiety about something woke me and stopped me from going back to sleep. I remember eventually working out the problem....... i mustn't stretch both legs at the same time! Whats it all about? I think I've gone round the bend.
But i will save my doze for the hour when i have to sit and rest and let the radioactive glucose whizz round my body ready for 'lights, camera, action'. I hope we don't need a 'Take 2'.
I will be back to blog again about my experience later. You'll recognise me.....i'll be the one with the radioactive glow!
Tuesday 21 January 2014
21.1.14
Now we're cooking with gas.
Got my PET scan booked for tomorrow at 5pm. They had a cancellation!
Strange instructions on the leaflet though. No strenuous activity 24 hours before. So I'm holding back on the gym, spin session and half marathon tonight!!! Ill sit quietly and watch tv instead!
Luckily im not particularly worried about it. The CT scan kicked those nerves to the kerb. Id rather not of course, but as its a necessity .......
It says nil by mouth for 6 hours before so I'm out for a breakfast with the lovely Linzi in the morning. And it says to bring a packed lunch to eat before leaving the hospital in case you can't find something you like in the hospital cafe! Haha, they must have been in our particular hospital cafe!!!
The thing i do like about it all, is the fact that i have my own special loo. Cos ill be radioactive, i can't just go in the public loos. Ive known people in my past that i would swear they were radioactive, and they used a public loo!!!
Now we're cooking with gas.
Got my PET scan booked for tomorrow at 5pm. They had a cancellation!
Strange instructions on the leaflet though. No strenuous activity 24 hours before. So I'm holding back on the gym, spin session and half marathon tonight!!! Ill sit quietly and watch tv instead!
Luckily im not particularly worried about it. The CT scan kicked those nerves to the kerb. Id rather not of course, but as its a necessity .......
It says nil by mouth for 6 hours before so I'm out for a breakfast with the lovely Linzi in the morning. And it says to bring a packed lunch to eat before leaving the hospital in case you can't find something you like in the hospital cafe! Haha, they must have been in our particular hospital cafe!!!
The thing i do like about it all, is the fact that i have my own special loo. Cos ill be radioactive, i can't just go in the public loos. Ive known people in my past that i would swear they were radioactive, and they used a public loo!!!
Monday 20 January 2014
21.1.14
Does anyone do what i do? When I'm stressed, even a little, i have the weirdest dreams.
I wake up after an hour or so remembering i have something I've forgotten to do. Something important. At work, I have jumped out of bed (its a sleeping duty in case you're thinking thats strange) and wandered round the place trying to figure which important thing it is that i haven't done. Eventually i see the light and realise, there is nothing. Im far too adept to miss anything!!! Yes, even being menopausal, Im adept. Strike that. Its a preposterous idea!
Anyway, sunday night. I remember waking up thinking there was something i should have done. Oh yes, i haven't taken my medication. In my hazy brain, i took some more and then realised i had taken double the amount. Well, i was mortified. I had it in my mind it was gonna kill me now cos id taken too much. I was panic stricken. I jumped out of bed and felt really scared cos of what id done. Then reality took over. Not only had i not taken twice the dose, i don't even take medication! What a weirdo i am.
Every night now i go through a checklist of all the things i should do, and have done in the hope i have a sleep without these manic dreams.
Better luck tonight.
Does anyone do what i do? When I'm stressed, even a little, i have the weirdest dreams.
I wake up after an hour or so remembering i have something I've forgotten to do. Something important. At work, I have jumped out of bed (its a sleeping duty in case you're thinking thats strange) and wandered round the place trying to figure which important thing it is that i haven't done. Eventually i see the light and realise, there is nothing. Im far too adept to miss anything!!! Yes, even being menopausal, Im adept. Strike that. Its a preposterous idea!
Anyway, sunday night. I remember waking up thinking there was something i should have done. Oh yes, i haven't taken my medication. In my hazy brain, i took some more and then realised i had taken double the amount. Well, i was mortified. I had it in my mind it was gonna kill me now cos id taken too much. I was panic stricken. I jumped out of bed and felt really scared cos of what id done. Then reality took over. Not only had i not taken twice the dose, i don't even take medication! What a weirdo i am.
Every night now i go through a checklist of all the things i should do, and have done in the hope i have a sleep without these manic dreams.
Better luck tonight.
20.1.14
Blue sky! Sun shining! Am i dreaming?
What a lovely day for walking the dogs through mud and puddles.
Today is a good day for finding positives in negatives.
I was wandering amiably through the idea of my imminent hair loss. I say imminent, i have another month or so.
What is the positive, i hear you ask?
It won't take me hours to dry it. It won't cost me so much in products. No more tangles! Im not allowed to dye it for 6 months after treatment, so that will save money and time. But the best positive. I can try lots of different wigs. That actually appeals to me. I can be whatever i want. Brunette, blonde, redhead. Oh the decisions.
The other negative that i have rolling around my brain......... since the menopause, maybe even earlier (but I'm not gonna explore that thought), i have become more forgetful, and at times, positively stupid. Like the time I ran into the garden where my son was relaxing in the sun. I screamed to him, panic-stricken, 'Chris, whats happened to my mobile phone? It won't light up when i press the buttons. Is it broken? Whats wrong with it? Oh my god i can't cope without my phone! You've gotta help me!'
His reply.........'Mum, take your sunglasses off!"
Oh the shame
Well all this type of behaviour has been blamed on the menopause or my age. Now, hurrah, I have an excuse, or i will have soon. Its 'Chemo Brain'. And yes i used capital letters, cos its a proper diagnosis. Ive been told it lasts for 6 months after your treatment finishes, so unfortunately i will have to go back to the cause being the menopause. But i may be able to drag it out a little longer.
So when i commit a faux pas, in a sincere voice i will say, 'Please forgive my forgetfulness, or stupidity, but i have been through a harrowing experience recently which has left me with these endearing attributes.'
'Whats your excuse?'
Blue sky! Sun shining! Am i dreaming?
What a lovely day for walking the dogs through mud and puddles.
Today is a good day for finding positives in negatives.
I was wandering amiably through the idea of my imminent hair loss. I say imminent, i have another month or so.
What is the positive, i hear you ask?
It won't take me hours to dry it. It won't cost me so much in products. No more tangles! Im not allowed to dye it for 6 months after treatment, so that will save money and time. But the best positive. I can try lots of different wigs. That actually appeals to me. I can be whatever i want. Brunette, blonde, redhead. Oh the decisions.
The other negative that i have rolling around my brain......... since the menopause, maybe even earlier (but I'm not gonna explore that thought), i have become more forgetful, and at times, positively stupid. Like the time I ran into the garden where my son was relaxing in the sun. I screamed to him, panic-stricken, 'Chris, whats happened to my mobile phone? It won't light up when i press the buttons. Is it broken? Whats wrong with it? Oh my god i can't cope without my phone! You've gotta help me!'
His reply.........'Mum, take your sunglasses off!"
Oh the shame
Well all this type of behaviour has been blamed on the menopause or my age. Now, hurrah, I have an excuse, or i will have soon. Its 'Chemo Brain'. And yes i used capital letters, cos its a proper diagnosis. Ive been told it lasts for 6 months after your treatment finishes, so unfortunately i will have to go back to the cause being the menopause. But i may be able to drag it out a little longer.
So when i commit a faux pas, in a sincere voice i will say, 'Please forgive my forgetfulness, or stupidity, but i have been through a harrowing experience recently which has left me with these endearing attributes.'
'Whats your excuse?'
Sunday 19 January 2014
19.1.14
Im amazed at the amount of help thats been offered to me by my friends. My new online friends (support group) have been helpful, lovely, kind, understanding, informative, funny, positive, honest. My real life friends have been just as good, and more. Hugs, kisses, offers of lifts, offers of accompanying me to scans or chemo, support, cleaning, cooking, someone to talk to, and even sex!
It really makes you feel good to know people think enough of you that they want to help.
And its weird, having cancer makes you feel a bit special! I mean, id rather not have it, but if you're gonna get it, its nice to feel special and loved. It makes you think though, shouldn't we be making each other feel loved and special, regardless of any health issues?
We're far too busy going about our business to see the important things in life. Not looking at mountains and lakes, not dancing and singing, although these things are nice and enjoyable. The important things are family and friends, love and care, helping and being helped. Theres nothing better than a heart felt cuddle, a stroke, a kiss.
Im gonna make a conscious effort to be more tactile to people that i love, not wait till they're ill.
My 3 sons are gonna love it!!!
Im amazed at the amount of help thats been offered to me by my friends. My new online friends (support group) have been helpful, lovely, kind, understanding, informative, funny, positive, honest. My real life friends have been just as good, and more. Hugs, kisses, offers of lifts, offers of accompanying me to scans or chemo, support, cleaning, cooking, someone to talk to, and even sex!
It really makes you feel good to know people think enough of you that they want to help.
And its weird, having cancer makes you feel a bit special! I mean, id rather not have it, but if you're gonna get it, its nice to feel special and loved. It makes you think though, shouldn't we be making each other feel loved and special, regardless of any health issues?
We're far too busy going about our business to see the important things in life. Not looking at mountains and lakes, not dancing and singing, although these things are nice and enjoyable. The important things are family and friends, love and care, helping and being helped. Theres nothing better than a heart felt cuddle, a stroke, a kiss.
Im gonna make a conscious effort to be more tactile to people that i love, not wait till they're ill.
My 3 sons are gonna love it!!!
Saturday 18 January 2014
18.1.14
Well I'm still here! I had my scan yesterday but it was such a busy day and evening that i didn't have time to blog!
I was quite anxious about the CT scan. And for no reason.
I had the lovely Linzi, one of my supportive friends, and all round ray of sunshine, round for a few hours to keep my mind occupied. She also brought me some choccy bickies. Love her cotton socks. Just wish she wouldn't worry so much about me.
I was Nil By Mouth from 12.30 apart from water. I had some mushroom soup for lunch at 12 and I was starving by 2.30!
Linda, my treatment support angel, and absolute star arrived for me at about 2.30. We set off on our journey to the hospital and i was feeling ok ish. On arrival we couldn't park - a little stressful. Arrived at Xray department and was given a jug of water to drink. Not too difficult. Then i was invited into the X-ray suite. I took every step in trepidation - i was heading to my doom. The radiologist was lovely. She explained everything. Stuck a cannula in my arm and then took a couple of dummy shots.
"Take a deep breath. Hold it, don't swallow." Snap "and breath normally".
She came back in the room and initiated the scanner to inject the dye. This was the bit i was worried about. Would it make me nauseous? I hate feeling nauseous. I felt a very mild metallic taste in my mouth and then a warmth rolling down my body. It was remarkably pleasant. She left the room, and ordered me to hold my breath, took the snap and all done. That easy! I waited for 5 minutes whilst she checked all had gone according to plan. Removed the cannula and sent me on my way.
Im not looking forward to another one, but when i do have to have it, i shan't worry so much.
We then went to the cafe for a hot chocolate and a Twirl.
I then was delivered safely home and transformed myself into a party animal and danced the night away. This scan business....not too bad is it?
Well I'm still here! I had my scan yesterday but it was such a busy day and evening that i didn't have time to blog!
I was quite anxious about the CT scan. And for no reason.
I had the lovely Linzi, one of my supportive friends, and all round ray of sunshine, round for a few hours to keep my mind occupied. She also brought me some choccy bickies. Love her cotton socks. Just wish she wouldn't worry so much about me.
I was Nil By Mouth from 12.30 apart from water. I had some mushroom soup for lunch at 12 and I was starving by 2.30!
Linda, my treatment support angel, and absolute star arrived for me at about 2.30. We set off on our journey to the hospital and i was feeling ok ish. On arrival we couldn't park - a little stressful. Arrived at Xray department and was given a jug of water to drink. Not too difficult. Then i was invited into the X-ray suite. I took every step in trepidation - i was heading to my doom. The radiologist was lovely. She explained everything. Stuck a cannula in my arm and then took a couple of dummy shots.
"Take a deep breath. Hold it, don't swallow." Snap "and breath normally".
She came back in the room and initiated the scanner to inject the dye. This was the bit i was worried about. Would it make me nauseous? I hate feeling nauseous. I felt a very mild metallic taste in my mouth and then a warmth rolling down my body. It was remarkably pleasant. She left the room, and ordered me to hold my breath, took the snap and all done. That easy! I waited for 5 minutes whilst she checked all had gone according to plan. Removed the cannula and sent me on my way.
Im not looking forward to another one, but when i do have to have it, i shan't worry so much.
We then went to the cafe for a hot chocolate and a Twirl.
I then was delivered safely home and transformed myself into a party animal and danced the night away. This scan business....not too bad is it?
Thursday 16 January 2014
16.1.14
Im filling myself with positive thoughts about my CT scan tomorrow. Im a bit picky as to what i put in my mouth, and this 'contrast', I'm wondering what it will taste like! Chocolate would be good, or cheese and onion crisp flavour! Will i be able to lay still whilst in the 'polo'? More importantly, will i be able to shut up for 10 minutes? Luckily my darling angel Linda will be with me, not during the scan of course, but i can chew her ear for an hour before whilst i wait for the 'contrast' to highlight my organs.
Im sure ill have plenty to blog tomorrow so ill finish here on this note. This isn't the end of my story!
Im filling myself with positive thoughts about my CT scan tomorrow. Im a bit picky as to what i put in my mouth, and this 'contrast', I'm wondering what it will taste like! Chocolate would be good, or cheese and onion crisp flavour! Will i be able to lay still whilst in the 'polo'? More importantly, will i be able to shut up for 10 minutes? Luckily my darling angel Linda will be with me, not during the scan of course, but i can chew her ear for an hour before whilst i wait for the 'contrast' to highlight my organs.
Im sure ill have plenty to blog tomorrow so ill finish here on this note. This isn't the end of my story!
Wednesday 15 January 2014
15.1.14
Oooh. Im booked in for a CT scan in 2 days time. That was quick. Apparently nil by mouth for 4 hours before except water. Then they give me a drink, water or contrast, and then inject dye into my veins. I have to wait for an hour and then a 10 minute scan and i can go home again.
I know it has to be done, I'm sure it'll be fine, I'm sure i won't shout and scream like a wimp, but I'm still scared. Man up!!!
Its the fear of the unknown I suppose.
Apparently the bloods i had taken yesterday were all fine. So thats good news.
I had a copy of the letter sent from my haematologist to my surgeon. All very interesting, but one line said. 'Jill is aware HL is a form of white blood cell cancer in the lymph glands and a fatal condition if untreated.' That sounds quite shocking, frightening. That in itself is enough to help me to man up!
Oooh. Im booked in for a CT scan in 2 days time. That was quick. Apparently nil by mouth for 4 hours before except water. Then they give me a drink, water or contrast, and then inject dye into my veins. I have to wait for an hour and then a 10 minute scan and i can go home again.
I know it has to be done, I'm sure it'll be fine, I'm sure i won't shout and scream like a wimp, but I'm still scared. Man up!!!
Its the fear of the unknown I suppose.
Apparently the bloods i had taken yesterday were all fine. So thats good news.
I had a copy of the letter sent from my haematologist to my surgeon. All very interesting, but one line said. 'Jill is aware HL is a form of white blood cell cancer in the lymph glands and a fatal condition if untreated.' That sounds quite shocking, frightening. That in itself is enough to help me to man up!
Tuesday 14 January 2014
14.1.14
Well am I happy? Ive seen my haematologist and he made me feel so good.
He said I had classic hodgkins lymphoma but it started in an unusual place, its normally the neck and i started in the groin.
He examined me and said he couldn't feel any further disease anywhere else. So he feels its in the early stages.
So........ im gonna have a PET scan and a CT scan, bloods, and respiratory function tests. As soon as they're done I'm gonna have 3 months of ABVD chemo followed by one month of radiotherapy.
Lets hope the scans agree with the haematologist!
He said i should eat healthily! I must look after myself. Any temperature or infection i have to contact the hospital straight away.
So much information to remember.
Anyway, I'm absolutely shattered, the stress has got the better of me, so its off to bedfordshire for me.
Nighty night
Well am I happy? Ive seen my haematologist and he made me feel so good.
He said I had classic hodgkins lymphoma but it started in an unusual place, its normally the neck and i started in the groin.
He examined me and said he couldn't feel any further disease anywhere else. So he feels its in the early stages.
So........ im gonna have a PET scan and a CT scan, bloods, and respiratory function tests. As soon as they're done I'm gonna have 3 months of ABVD chemo followed by one month of radiotherapy.
Lets hope the scans agree with the haematologist!
He said i should eat healthily! I must look after myself. Any temperature or infection i have to contact the hospital straight away.
So much information to remember.
Anyway, I'm absolutely shattered, the stress has got the better of me, so its off to bedfordshire for me.
Nighty night
14.1.14
Its D day, or should I say HL day!
Ive had loads of info on the support group page that I joined on Facebook. Its been tremendous to hear everyones stories, although a little frightening now and again when i realise the reality of my health issue. But id rather know! All my new friends sound so brave and inspirational.
Off of Facebook i have my lovely friends that are being so supportive. Too many to name, but Linzis been wonderful, Rachel, Pete, my boys, and many others. But Linda.... what can i say? I always knew she was something special. A heart as big as the world. She has all her own problems but couldn't be there for me more if she tried. How can i ever repay her?
All of the support is gearing me up ready for my visit to the haematologist. This appointment makes it real! Im really interested to find out all the info, but its like a minefield. So much to digest. The thing I'm not looking forward to is finding out where i have lymphoma. In my head i have given myself the stage 1a. '1' cos I've only had it in my enlarged lymph glands.............so far!!! And 'a' cos i don't seem to have any symptoms, although I've given it my best shot at making any other symptoms i have, a lymphoma symptom! Why do we do this to ourselves? I suppose I'm looking at worse case scenario and hopefully to get told its not that bad. Fingers crossed.
I think stress makes a difference too. Im fairly positive but there is an underlying niggle. Every so often i remember and i feel nauseous. Im hoping this stress is making me feel worse and not the fact that i have lymphoma in far more places than id like it to be!
Anyway, onwards and upwards. I am off for a nice soak in the bath, a relaxing soak.
I will be back on later, all being well, with all the info I've had from my rendezvous with Dr Jack.
See you later alligator!
Its D day, or should I say HL day!
Ive had loads of info on the support group page that I joined on Facebook. Its been tremendous to hear everyones stories, although a little frightening now and again when i realise the reality of my health issue. But id rather know! All my new friends sound so brave and inspirational.
Off of Facebook i have my lovely friends that are being so supportive. Too many to name, but Linzis been wonderful, Rachel, Pete, my boys, and many others. But Linda.... what can i say? I always knew she was something special. A heart as big as the world. She has all her own problems but couldn't be there for me more if she tried. How can i ever repay her?
All of the support is gearing me up ready for my visit to the haematologist. This appointment makes it real! Im really interested to find out all the info, but its like a minefield. So much to digest. The thing I'm not looking forward to is finding out where i have lymphoma. In my head i have given myself the stage 1a. '1' cos I've only had it in my enlarged lymph glands.............so far!!! And 'a' cos i don't seem to have any symptoms, although I've given it my best shot at making any other symptoms i have, a lymphoma symptom! Why do we do this to ourselves? I suppose I'm looking at worse case scenario and hopefully to get told its not that bad. Fingers crossed.
I think stress makes a difference too. Im fairly positive but there is an underlying niggle. Every so often i remember and i feel nauseous. Im hoping this stress is making me feel worse and not the fact that i have lymphoma in far more places than id like it to be!
Anyway, onwards and upwards. I am off for a nice soak in the bath, a relaxing soak.
I will be back on later, all being well, with all the info I've had from my rendezvous with Dr Jack.
See you later alligator!
Sunday 12 January 2014
12.1.14
Following my super positive post yesterday, I'm down! I had a lovely evening with my boyfriend. He was very sweet when I told him how I felt and how positive I was feeling. He walked out of the door to go home, and bang. I hit the floor. I was gobsmacked, I even cried. Im feeling a bit better again now, but maybe this is what i have to get used to?
Following my super positive post yesterday, I'm down! I had a lovely evening with my boyfriend. He was very sweet when I told him how I felt and how positive I was feeling. He walked out of the door to go home, and bang. I hit the floor. I was gobsmacked, I even cried. Im feeling a bit better again now, but maybe this is what i have to get used to?
Saturday 11 January 2014
This blog is a record of my journey after being diagnosed with Hodgkins Lymphoma.
Its weird to have no idea what is to become of me. What will I go through? Who will help me, and who will I help? Who will I meet? And will it make me a better person?
Firstly I spose I should give an account of how I came to this.
In June 2013 I moved house and there was nothing but trouble associated with the conveyancing and the house move. I moved from my sons home, to a friends empty house for 2 months until my house was vacated and ready for me to move in and make my mark on it.
So June it was. I found I had a few health problems, all stress related. Bloated, vomiting, stomach pains. The doctor diagnosed Irritable Bowel Syndrome and i was treated and responded well. I happened to mention i had a gland up in my groin. It wasn't even commented on by my GP, so i assumed it was just 'one of those things'. My bloods were a little raised, ESR and Eosinophils. But, I was reassured it was nothing to worry about as we couldn't find a problem that would cause these abnormalities.
About October time I revisited the surgery and saw a different doctor. She suggested we scan the annoying article.
About 6 weeks later I received my appointment for the scan so off I toddled. I was told it was inconclusive so I needed surgery to remove the glands and send them to histology to find out what they were.
The doctor was very sweet! He told me he was very sorry to give me this news just before Christmas. It could be nothing, but it could be sinister so we need to act quickly. Put the fear of God into me. 'They will want to give you a full body scan to see where else it is!' I felt he had jumped the gun. The report said it could be nothing. What a scaremonger I thought. It seems he was right.
The gland was removed, tested and the surgeon told me, 'I'm sure its nothing, you have no other symptoms. Don't worry.' Result day, I called in to the hospital just before going to work on a night duty and he told me I had Lymphoma. 'Its nothing,' he said, 'Its completely curable, nothing to worry about.' I wonder if he would have been worried if it were him that had the diagnosis, or his family member.
I went to work in a state of shock. I really thought it was nothing. I told my friend and my children (23, 25 and 27), my nursey friend, who really made me feel a bit better, and my boyfriend. A few others were told throughout the evening. I cried a bit, not much. Whats the point? It just gives me a headache and a blocked nose!
Thats where I am now. Ive told quite a few of my friends. Ive joined a support group on Facebook. Everyones been very kind and very helpful. And the support group is an absolute must. Im happy knowing I can lean on them all there, and as payment for all their kindness and help, I will be there for future sufferers.
Now on with my journey. My first appointment with my haematologist is on tuesday. Im sort of looking forward to it to get some personal information about my very own lymphoma. A little scared, but hey ho, thats life.
Its weird to have no idea what is to become of me. What will I go through? Who will help me, and who will I help? Who will I meet? And will it make me a better person?
Firstly I spose I should give an account of how I came to this.
In June 2013 I moved house and there was nothing but trouble associated with the conveyancing and the house move. I moved from my sons home, to a friends empty house for 2 months until my house was vacated and ready for me to move in and make my mark on it.
So June it was. I found I had a few health problems, all stress related. Bloated, vomiting, stomach pains. The doctor diagnosed Irritable Bowel Syndrome and i was treated and responded well. I happened to mention i had a gland up in my groin. It wasn't even commented on by my GP, so i assumed it was just 'one of those things'. My bloods were a little raised, ESR and Eosinophils. But, I was reassured it was nothing to worry about as we couldn't find a problem that would cause these abnormalities.
About October time I revisited the surgery and saw a different doctor. She suggested we scan the annoying article.
About 6 weeks later I received my appointment for the scan so off I toddled. I was told it was inconclusive so I needed surgery to remove the glands and send them to histology to find out what they were.
The doctor was very sweet! He told me he was very sorry to give me this news just before Christmas. It could be nothing, but it could be sinister so we need to act quickly. Put the fear of God into me. 'They will want to give you a full body scan to see where else it is!' I felt he had jumped the gun. The report said it could be nothing. What a scaremonger I thought. It seems he was right.
The gland was removed, tested and the surgeon told me, 'I'm sure its nothing, you have no other symptoms. Don't worry.' Result day, I called in to the hospital just before going to work on a night duty and he told me I had Lymphoma. 'Its nothing,' he said, 'Its completely curable, nothing to worry about.' I wonder if he would have been worried if it were him that had the diagnosis, or his family member.
I went to work in a state of shock. I really thought it was nothing. I told my friend and my children (23, 25 and 27), my nursey friend, who really made me feel a bit better, and my boyfriend. A few others were told throughout the evening. I cried a bit, not much. Whats the point? It just gives me a headache and a blocked nose!
Thats where I am now. Ive told quite a few of my friends. Ive joined a support group on Facebook. Everyones been very kind and very helpful. And the support group is an absolute must. Im happy knowing I can lean on them all there, and as payment for all their kindness and help, I will be there for future sufferers.
Now on with my journey. My first appointment with my haematologist is on tuesday. Im sort of looking forward to it to get some personal information about my very own lymphoma. A little scared, but hey ho, thats life.
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