The last few days I have been scrolling through twitter reading blogs some old, some new. I have read of an incredibly brave young lady using her fight with terminal cancer to raise awareness. a friends blog about recent major surgery,not to prolong her life but too make it more comfortable.
I also came across the blog of a young man facing the stigma of being HIV+. His awful treatment at his local job centre, and subsequent meetings with job centre officials that now means all employees will be given mandatory training in dealing with clients with this medical condition. Well done to that young man.
So after a hospital free year I tentatively stepped into 2013 hoping that this year would be the same . . cue sound effects and screeching brakes! We're only 46 days into the year and I'm back in hospital.
A few weeks ago I kept being woken up in the night by stomach cramps and a change in bowel habit (PANIC). Miracle of miracles I managed to get a doctors appointment the next day. The GP diagnosed bug/food poisining, I will add here she is lucky to still have all her front teeth as after every sentence she said "you do understand what I'm saying dont you" and "its nothing to do with your cancer". Note to self even if she is the only doctor available in the whole of London DO NOT see her again!! A few days later the cramps started again,slightly worse and again accompanied by amazing belching. An old washer woman on 6 pints of cider for breakfast would have been proud of me. Anyway being a sunday had to go to the local out of hours doctor and saw a much more understanding doc. She diagnosed excessive stomach acid and prescribed Omeprazole (flash back to chemo days) and Gaviscon.After a few days this seemed to have done the trick and I carried on with life.
Cue screeching brakes again because a few days later the symptoms started up again,as before I sipped cooled boiled water and managed to sleep most of the night. The next day was Valentines day *yawn* and had promised to babysit for my daughter so she could go out with her partner.On the promise of them buying us a chinese meal hubby and I made our way to look after the 2 mini-monsters!
Within an hour of eating I was again in awful pain this time more in my back.The pain was like full blown labour I began to wonder if maybe I had been taken by aliens,impregnated and about to give birth to a monster with 5 eyes,6 legs and 4 arms!
Again I managed to get some sleep but the pain was still bad in the morning so thats when I phoned an ambulance. Family and close friends were shocked I had made the call, having had many disagreements in the past about not being ill enough!!
After blood tests (liver blood tests all over the place) and an ultra sound it was confirmed I had an inflammed gall bladder and gall stones one of which was blocking bile duct and was admitted to hospital on the friday evening. FFS!!! I was only in for three nights and started on strong anti-biotics. I asked the doctor if they would remove the gall bladder and he said probably not :( Mainly because they cant do keyhole procedure as there is probably too much scar tissue from previous surgeries.
On the sunday,while in hospital it dawned on me that it was 7 years to the day since I had been admitted. Sunday 19th feb 2006. Being in hospital again was quite surreal. So much has happened since then and now a new problem! The surgery when they found and removed the tumour and part of my bowel happened on weds 22nd feb but I didnt find out it was a malignant tumour until 6wks later at post op check up.
So yet again bowel cancer is getting in the way, because now I'm scared to eat certain foods. The annoying thing is I dont eat fried food,pastry or any foods with a high fat content. People have told me what they found set the gall stones off . . cheese,spicy foods.
Appoinment with gall bladder consultant is in a couple of weeks and I will try and fight my case to have gall bladder removed. With the question mark of whether the cancer will return hanging over me I now dont want a second qestion mark every time I eat something different, and I certainly dont want to experience that pain again. If they cant do keyhole would I be able to endure invasive surgery again, hell yes a few weeks recovery compared with not knowing if my new lodgers (gall stones) are going to act up again seems a good option!
Aswell as that tomorrow I have an appointment at the Haematuria clinic and another potential problem.
I was hoping that this year would again be free of problems and hospitals but it hasnt started too well. Hey ho . . . onwards and upwards!!
Sunday, 24 February 2013
Tuesday, 15 January 2013
The Aftermath . . .
So the new year has arrived,in some respects I was quite sorry to say goodbye to 2012. It was a good year for me in many ways. Clear scans therefore no cancer or surgery! My 6th grandchild and only grandaughter was born. I also got to meet some amazing people.
I know I've said it before but going to Beating Bowel cancers patient day was one of the best things I have done. The people I met through that day and since on twitter and facebook have given me a new outlook on life.
The scars that cancer leaves behind physically, emotionally and physiologically can not be felt or understood unless you have been there. Not to be judged or berated for having one of 'those days' is amazing. Once you have had cancer you can understand and feel other cancer patients highs and lows. We have all been on the same journey except our paths have taken different routes.
Last week I started a Macmillan survivorship course. We were asked what was the hardest choice we had made through cancer, for me it was going for genetic counselling and now waiting for results. yet again the tears fell, but not only me, others also got emotional and the tissues were passed round the table as they told of their choices.So emotionally am I completely over this whole journey, simple answer . . NO!
Every day I hear about people that are in pain, even though they are free from cancer. Whether it be from neuropathy caused by chemo or scar tissue,adhesions or damage from surgery or radiotherapy. So the aftermath of having had cancer begins.
The fact that maybe years on you, like I am,are suffering,especially in this cold weather,from neuropathy in hands and feet, That sometimes because of this you may get up from a chair and have a 'drunken stumble' or take something out of the fridge or freezer and nearly drop it because it hurt your hands.
Or perhaps you like me are in almost constant pain as a result of damage caused by surgery. I didnt expect to be on pain killers indefinitely and I'm sure some of you didnt expect it either!
I didnt have radiotherapy so I cant comment on it, but I know there a lot of you who do suffer as a result of having it. So physically is my journey over . . .NO!
Off course weighing up the pros and cons, treatment against no treatment, there really is only one answer . . .Yes. There are too many people that dont get that choice.
Its so wonderful to hear of people going back too work. Maybe one day it will be my turn, sadly not my old job but maybe somewhere there is a little niche for me.
Ideally I would like to start selling some of my craft makes so need to look into that.
So there we are a little insight into how I see some things. I dont expect everyone to agree with me.Maybe it might help someone out there who feels they're the only one going through pain or still struggling with accepting their diagnosis.
Just remember we're in this together.
One for all and all for one x
I know I've said it before but going to Beating Bowel cancers patient day was one of the best things I have done. The people I met through that day and since on twitter and facebook have given me a new outlook on life.
The scars that cancer leaves behind physically, emotionally and physiologically can not be felt or understood unless you have been there. Not to be judged or berated for having one of 'those days' is amazing. Once you have had cancer you can understand and feel other cancer patients highs and lows. We have all been on the same journey except our paths have taken different routes.
Last week I started a Macmillan survivorship course. We were asked what was the hardest choice we had made through cancer, for me it was going for genetic counselling and now waiting for results. yet again the tears fell, but not only me, others also got emotional and the tissues were passed round the table as they told of their choices.So emotionally am I completely over this whole journey, simple answer . . NO!
Every day I hear about people that are in pain, even though they are free from cancer. Whether it be from neuropathy caused by chemo or scar tissue,adhesions or damage from surgery or radiotherapy. So the aftermath of having had cancer begins.
The fact that maybe years on you, like I am,are suffering,especially in this cold weather,from neuropathy in hands and feet, That sometimes because of this you may get up from a chair and have a 'drunken stumble' or take something out of the fridge or freezer and nearly drop it because it hurt your hands.
Or perhaps you like me are in almost constant pain as a result of damage caused by surgery. I didnt expect to be on pain killers indefinitely and I'm sure some of you didnt expect it either!
I didnt have radiotherapy so I cant comment on it, but I know there a lot of you who do suffer as a result of having it. So physically is my journey over . . .NO!
Off course weighing up the pros and cons, treatment against no treatment, there really is only one answer . . .Yes. There are too many people that dont get that choice.
Its so wonderful to hear of people going back too work. Maybe one day it will be my turn, sadly not my old job but maybe somewhere there is a little niche for me.
Ideally I would like to start selling some of my craft makes so need to look into that.
So there we are a little insight into how I see some things. I dont expect everyone to agree with me.Maybe it might help someone out there who feels they're the only one going through pain or still struggling with accepting their diagnosis.
Just remember we're in this together.
One for all and all for one x
Sunday, 16 December 2012
All Clear and Tweet ups
It has actually happened a whole year with no surgery! First year in seven and no surgery. Still cant quite believe it but my last CT shows no evidence of change which also means second year in seven NO CANCER. It appears I am winning the battle so do one cancer consider yourself banished!!
Okay Im not naive enough to think there might be a chance it could return but the fact that hosp now only want to scan twice a year not four times a year gives me hope.
Moving on I know in my last post I spoke a lot about the support on twitter from people that may never meet. However on the 1st of Dec there was a tweet up which I hope will lead to more!! It was amazing to meet up with these wonderful people to put not only a face but a voice to a tweet! It was a wonderful,awesome,brilliant day. Some of us met for a coffee at the Royal Festival hall before moving on to meet the rest of our party at a lovely Italian restaurant called Vapiano.
The food was good,more importantly the company was excellent. Laughter and conversation flowed as though we had been friends for years. It did occur to me that other customers might have thought that some of us may have been carers for others because of the noise but the table of santas next to us seemed to be getting stranger looks. There was almost an incident involving a basil plant but I wont dwell on that.
We had a wander down Regent St.,a quick visit to the Apple store before visiting the Nespresso Boutique where there was nearly another incident! A member of staff accidently head butted one of our party, luckily our personal lawyer rushed in to work out damages and we were able to queue jump to a coffee sample! It also seems that Jedward has a third member working in the store!
It took us a while to find a pub with enough room for us all,being a saturday and pre-theatre time, but we did. It was a day I will remember for a long time :-)
For me this month has been mostly highs but there has been a few lows thrown in. Being diagnosed with osteo-arthritis has added a few lows. Having to finally admit getting in and out of bath was difficult but I now have a bath chair which helps but isnt ideal. I've also been given a walking stick for those wobbly days which again I'm not happy about!
Something strange happened aswell. Last week I was invited to a survivorship group at the Macmillan centre at Kings.The first two talks about exercise and diet were interesting. Then came a talk about the emotional impact of cancer and to my suprise I couldnt stop the tears. I dont know what triggered it I thought I had got past all the hurdles but obviously I havnt.
Maybe it was because I was so worried about the scan results I hadnt had then. Maybe I still havnt accepted everything that has happened.
Right now though I'm focusing on the new year. I want to really start doing my crafts more,when I eventually get my room sorted, and try to sell some work. I want NO I need to start feeling 'normal' and get out more. I want to break free from all the restraints cancer has placed on me but that really isnt entirely possible because of the pain left from surgeries.
So as someone said to me earlier onwards and upwards. I dont know what the new year has in store for me, none of us do,but I hope/want to be a stronger person.
Okay Im not naive enough to think there might be a chance it could return but the fact that hosp now only want to scan twice a year not four times a year gives me hope.
Moving on I know in my last post I spoke a lot about the support on twitter from people that may never meet. However on the 1st of Dec there was a tweet up which I hope will lead to more!! It was amazing to meet up with these wonderful people to put not only a face but a voice to a tweet! It was a wonderful,awesome,brilliant day. Some of us met for a coffee at the Royal Festival hall before moving on to meet the rest of our party at a lovely Italian restaurant called Vapiano.
The food was good,more importantly the company was excellent. Laughter and conversation flowed as though we had been friends for years. It did occur to me that other customers might have thought that some of us may have been carers for others because of the noise but the table of santas next to us seemed to be getting stranger looks. There was almost an incident involving a basil plant but I wont dwell on that.
We had a wander down Regent St.,a quick visit to the Apple store before visiting the Nespresso Boutique where there was nearly another incident! A member of staff accidently head butted one of our party, luckily our personal lawyer rushed in to work out damages and we were able to queue jump to a coffee sample! It also seems that Jedward has a third member working in the store!
It took us a while to find a pub with enough room for us all,being a saturday and pre-theatre time, but we did. It was a day I will remember for a long time :-)
For me this month has been mostly highs but there has been a few lows thrown in. Being diagnosed with osteo-arthritis has added a few lows. Having to finally admit getting in and out of bath was difficult but I now have a bath chair which helps but isnt ideal. I've also been given a walking stick for those wobbly days which again I'm not happy about!
Something strange happened aswell. Last week I was invited to a survivorship group at the Macmillan centre at Kings.The first two talks about exercise and diet were interesting. Then came a talk about the emotional impact of cancer and to my suprise I couldnt stop the tears. I dont know what triggered it I thought I had got past all the hurdles but obviously I havnt.
Maybe it was because I was so worried about the scan results I hadnt had then. Maybe I still havnt accepted everything that has happened.
Right now though I'm focusing on the new year. I want to really start doing my crafts more,when I eventually get my room sorted, and try to sell some work. I want NO I need to start feeling 'normal' and get out more. I want to break free from all the restraints cancer has placed on me but that really isnt entirely possible because of the pain left from surgeries.
So as someone said to me earlier onwards and upwards. I dont know what the new year has in store for me, none of us do,but I hope/want to be a stronger person.
Thursday, 22 November 2012
Emotional Rollercoasters and Genetics
Well its been a while since I last blogged but a lot has happened, not only to me and my family but to my bowel cancer buddies and twitter family.
A few months ago lots of us were going for tests and so many of us had clear results that we climbed high on an emotional rollercoaster, virtual parties on twitter in full swing. Then we came crashing down to earth as we heard the devastating news that one of our twitter family had had very bad news. Instantly the mood on twitter changed instead of raising a virtual glass we were reaching out to hug and hold the hands of a lovely couple.Im sure like me others were going through the 'what ifs' and 'maybes', we're human and always start thinking the worst.
Sadly a few weeks later we lost that member of our twitter family to bowel cancer.
Then more good results came and once again we were off on a high although this time tinged with sadness. Some of our twitter friends were finishing chemo and getting themselves ready to get their lifes back on track, but then again we came hurtling down as one of our bowel cancer buddies had bad news.
It never fails to amaze me that the friends we have made on twitter are all so supportive. We may never meet but they are always there for a virtual hug,advice or a good old fashioned gossip!
Twitter is also an amazing place to raise awareness of bowel cancer and other life changing illnesses.
Im also pleased to be part of Beating Bowel Cancer's facebook support groups so if you or you know anyone with bowel cancer please tell them to have a look for us.
Im so happy to hear of so many people finishing treatment and starting back to work. Their excitement is obvious and rightly so! I do have to admit that I am envious of them, I miss my job,I miss being out in the big wide world! I also miss having money in my bank every month!!
On tuesday I had an appointment at the genetics clinic at Guys hospital. This is the first time that Ive been to a hospital shaking! So nervous, after all this isnt so much about me but my daughters futures. I was 47 when diagnosed with bowel cancer,lost mum aged 44 to ovarian cancer so there is a risk that they may be linked that we have a faulty gene known as Lynch syndrome.
On a positive note if the test result is positive the girls will be offered a blood test and if needed early screening. So actually its a good thing for them as I certainly wouldnt want them to go through what I have.
Next week is my next ct scan, Im more nervous about this one than any others this year. So far all clear and if this one is it will mean the first year in seven that I havnt had any ops and the second in seven that cancer hasnt raised its ugly head!!
FINGERS CROSSED!!!!
A few months ago lots of us were going for tests and so many of us had clear results that we climbed high on an emotional rollercoaster, virtual parties on twitter in full swing. Then we came crashing down to earth as we heard the devastating news that one of our twitter family had had very bad news. Instantly the mood on twitter changed instead of raising a virtual glass we were reaching out to hug and hold the hands of a lovely couple.Im sure like me others were going through the 'what ifs' and 'maybes', we're human and always start thinking the worst.
Sadly a few weeks later we lost that member of our twitter family to bowel cancer.
Then more good results came and once again we were off on a high although this time tinged with sadness. Some of our twitter friends were finishing chemo and getting themselves ready to get their lifes back on track, but then again we came hurtling down as one of our bowel cancer buddies had bad news.
It never fails to amaze me that the friends we have made on twitter are all so supportive. We may never meet but they are always there for a virtual hug,advice or a good old fashioned gossip!
Twitter is also an amazing place to raise awareness of bowel cancer and other life changing illnesses.
Im also pleased to be part of Beating Bowel Cancer's facebook support groups so if you or you know anyone with bowel cancer please tell them to have a look for us.
Im so happy to hear of so many people finishing treatment and starting back to work. Their excitement is obvious and rightly so! I do have to admit that I am envious of them, I miss my job,I miss being out in the big wide world! I also miss having money in my bank every month!!
On tuesday I had an appointment at the genetics clinic at Guys hospital. This is the first time that Ive been to a hospital shaking! So nervous, after all this isnt so much about me but my daughters futures. I was 47 when diagnosed with bowel cancer,lost mum aged 44 to ovarian cancer so there is a risk that they may be linked that we have a faulty gene known as Lynch syndrome.
On a positive note if the test result is positive the girls will be offered a blood test and if needed early screening. So actually its a good thing for them as I certainly wouldnt want them to go through what I have.
Next week is my next ct scan, Im more nervous about this one than any others this year. So far all clear and if this one is it will mean the first year in seven that I havnt had any ops and the second in seven that cancer hasnt raised its ugly head!!
FINGERS CROSSED!!!!
Thursday, 20 September 2012
A Repreive and Broken Ribs!!
A few days ago my consultant phoned to tell me the bone scan was clear. Oh Yes!! Clear apart from trauma to my ribs?
I havnt told you about that! At last appointment with lung consultant when he was ordering the bone scan the conversation went something like this:
Doc "I will order a bone scan to be on the safe side but I know what it will show"
Me (slightly nervous) "You do"
Doc "Yes it will show trauma to your ribs where I had to break one or two during your surgeries"
Me " Really I didnt know about that"
Doc "If I had told you before surgery would you still have wanted the ops?"
Hmm did I have much choice?? It would explain why it was so impossible to lie flat after the ops and possibly why I still have pain in that area!!
Its evident my consultant has a strange sense of humour, while being prepped for surgery a nurse commented on one of my tattoos and he asked had I got one for him erm no! Oh yes he quipped you have a big scar down your back thats my mark!!
Ok so 2 clear ct's,clear colonoscopy and now a clear bone scan so far this year. To say I'm relieved would be an understatement, now I'm starting to believe that maybe just maybe cancer has given up the fight and surrended!Next ct end of November so we will see.
You would think that I should be out celebrating, dancing on tables and not acting my age but the funny thing is I've actually being feeling quite low. Emotions can be so difficult to control sometimes, you work yourself into a frenzy waiting for the results and the possible 'what ifs' and then you are told everything is ok . . . . . great news off course but why then is there a few days when the world seems to carry on around you as though nothing has happened?
Unless you have been in a similar position its hard for someone else to understand. By writing this blog I hope it helps others to realise that all though things might be great physically,emotionally its still hard to come to terms with everything that has or is going on. The fact cancer is not evident right now doesnt mean I'm over it all.
I have days of feeling isolated, of being inadequate because I can no longer do things I used to. I should be able to pick up and play with my grandchildren (not the 10 or 12yr old they are too big!) but I find it difficult. Today I went shopping with my eldest daughter Nikola and her two youngest Ashley who is 2 and baby Ellie 8wks. I held baby as she was crying while Nik was trying clothes on and it hurt!
I curse cancer every time I take a painkiller or look in the mirror and see the scars. I curse the chemo that made me so sick and has left me with neuropathy in my hands and feet.
I read with real happiness that other cancer survivors are going back to work, and I curse cancer for making me unable to return to a job I loved.
This is why I have volunteered to help Beating Bowel Cancer help raise awareness of this awful disease, to make people aware bowel cancer doesnt care how old you are,how rich or poor or where you live. By hopefully being able to give support to people that are just starting their cancer journey.
Beating Bowel Cancer and Bowel Cancer Uk aim to get the word out on to the street and so do I!!
I havnt told you about that! At last appointment with lung consultant when he was ordering the bone scan the conversation went something like this:
Doc "I will order a bone scan to be on the safe side but I know what it will show"
Me (slightly nervous) "You do"
Doc "Yes it will show trauma to your ribs where I had to break one or two during your surgeries"
Me " Really I didnt know about that"
Doc "If I had told you before surgery would you still have wanted the ops?"
Hmm did I have much choice?? It would explain why it was so impossible to lie flat after the ops and possibly why I still have pain in that area!!
Its evident my consultant has a strange sense of humour, while being prepped for surgery a nurse commented on one of my tattoos and he asked had I got one for him erm no! Oh yes he quipped you have a big scar down your back thats my mark!!
Ok so 2 clear ct's,clear colonoscopy and now a clear bone scan so far this year. To say I'm relieved would be an understatement, now I'm starting to believe that maybe just maybe cancer has given up the fight and surrended!Next ct end of November so we will see.
You would think that I should be out celebrating, dancing on tables and not acting my age but the funny thing is I've actually being feeling quite low. Emotions can be so difficult to control sometimes, you work yourself into a frenzy waiting for the results and the possible 'what ifs' and then you are told everything is ok . . . . . great news off course but why then is there a few days when the world seems to carry on around you as though nothing has happened?
Unless you have been in a similar position its hard for someone else to understand. By writing this blog I hope it helps others to realise that all though things might be great physically,emotionally its still hard to come to terms with everything that has or is going on. The fact cancer is not evident right now doesnt mean I'm over it all.
I have days of feeling isolated, of being inadequate because I can no longer do things I used to. I should be able to pick up and play with my grandchildren (not the 10 or 12yr old they are too big!) but I find it difficult. Today I went shopping with my eldest daughter Nikola and her two youngest Ashley who is 2 and baby Ellie 8wks. I held baby as she was crying while Nik was trying clothes on and it hurt!
I curse cancer every time I take a painkiller or look in the mirror and see the scars. I curse the chemo that made me so sick and has left me with neuropathy in my hands and feet.
I read with real happiness that other cancer survivors are going back to work, and I curse cancer for making me unable to return to a job I loved.
This is why I have volunteered to help Beating Bowel Cancer help raise awareness of this awful disease, to make people aware bowel cancer doesnt care how old you are,how rich or poor or where you live. By hopefully being able to give support to people that are just starting their cancer journey.
Beating Bowel Cancer and Bowel Cancer Uk aim to get the word out on to the street and so do I!!
Wednesday, 12 September 2012
Pitfalls, Picc lines and Pampering
So here we again waiting for yet more results!!
If you have read my previous blogs you will have met the evil villain of my story namely Bowel cancer and his 'off springs' lung mets. Today I had a bone scan, although Im staying positive the wait for these results is making me more nervous. Why? Well IF something is found it will probably mean chemo for me and I dont want to think about it any further.
I have been told off for leaving bits out of my earlier blogs. There are things I didnt want to talk about mainly because I still have days when its hard to comprehend everything that has happened. It has taken me a long time to say the word and admit I had/have cancer. Yes after all all its just a 6 letter word starting with C like camera or carrot, but its a much bigger word if you have been affected by it. So lets all say it together C A N C E R cancer!! A phone call earlier this year changed my life but I will come to that later,
Right bits that I left out that are mentionable. The best bits first. Im sure you will all agree one of the worst things about recovering from surgery is not being able to shower or wash your hair. After my first op my daughter Stacey decided to take matters in her own hands and wash my hair. So we waddled of to the shower, that is I did she walked normally! Now if you have had abdominal surgery its difficult to bend over or lean back so there I am sitting in a chair with Stacey trying in vain to not wet anything but my hair! Hmm I think she got wetter than me in the process!
Then there are those little jobs like cutting toe-nails and shaving legs. Rachael doesnt like my feet and doesnt hide the fact so when it came to these tasks she wore rubber gloves,no not the same ones used for washing up. Another time she thought it would be nice for me to have a bubbly foot spa, warning dont put too much foam bath in a foot spa, yes there was bubbles everywhere!!I have to add that as the only daughter at home she has had the dubious pleasure with helping me wash on many occasions. She has also become a dab hand at wound cleaning, dressing changing and picc line flushing!! On the subject of picc lines when I had mine 'installed' what a to do that was. The chemo nurse said it wouldn't take long, but over an hour later 3 failed attempts in my left arm it was put in the right arm. Off course thats not the end of it, although I didnt like some have a problem with the line itself, I became allergic to every form of dressing they put on it so it was held in place purely by the bandage!
As for the pitfalls along the way it was never my intention to make my blog all doom and gloom so for that reason Im not going to tell horror stories about chemo side effects or surgeries. End of that. Similarly I dont want peoples sympathies, yes Ive been through a lot but who hasnt? Anyone who has been affected by bowel cancer,personally as a carer or losing a loved one has been to hell and back. Many still are :(
Back to the phone call earlier this year. One of my specialist nurses rang to ask if I would like to go to a patients day. After much deliberation Rachael and I went. The day was being run by a wonderful charity called Beating Bowel Cancer and I havnt looked back since (well maybe on the odd bad day). I have met some amazing people and their families. Been to some amazing fundraising events and intend going to many more! Oh and Im not embarrased to say bum or poo in public anymore!!
If you have read my previous blogs you will have met the evil villain of my story namely Bowel cancer and his 'off springs' lung mets. Today I had a bone scan, although Im staying positive the wait for these results is making me more nervous. Why? Well IF something is found it will probably mean chemo for me and I dont want to think about it any further.
I have been told off for leaving bits out of my earlier blogs. There are things I didnt want to talk about mainly because I still have days when its hard to comprehend everything that has happened. It has taken me a long time to say the word and admit I had/have cancer. Yes after all all its just a 6 letter word starting with C like camera or carrot, but its a much bigger word if you have been affected by it. So lets all say it together C A N C E R cancer!! A phone call earlier this year changed my life but I will come to that later,
Right bits that I left out that are mentionable. The best bits first. Im sure you will all agree one of the worst things about recovering from surgery is not being able to shower or wash your hair. After my first op my daughter Stacey decided to take matters in her own hands and wash my hair. So we waddled of to the shower, that is I did she walked normally! Now if you have had abdominal surgery its difficult to bend over or lean back so there I am sitting in a chair with Stacey trying in vain to not wet anything but my hair! Hmm I think she got wetter than me in the process!
Then there are those little jobs like cutting toe-nails and shaving legs. Rachael doesnt like my feet and doesnt hide the fact so when it came to these tasks she wore rubber gloves,no not the same ones used for washing up. Another time she thought it would be nice for me to have a bubbly foot spa, warning dont put too much foam bath in a foot spa, yes there was bubbles everywhere!!I have to add that as the only daughter at home she has had the dubious pleasure with helping me wash on many occasions. She has also become a dab hand at wound cleaning, dressing changing and picc line flushing!! On the subject of picc lines when I had mine 'installed' what a to do that was. The chemo nurse said it wouldn't take long, but over an hour later 3 failed attempts in my left arm it was put in the right arm. Off course thats not the end of it, although I didnt like some have a problem with the line itself, I became allergic to every form of dressing they put on it so it was held in place purely by the bandage!
As for the pitfalls along the way it was never my intention to make my blog all doom and gloom so for that reason Im not going to tell horror stories about chemo side effects or surgeries. End of that. Similarly I dont want peoples sympathies, yes Ive been through a lot but who hasnt? Anyone who has been affected by bowel cancer,personally as a carer or losing a loved one has been to hell and back. Many still are :(
Back to the phone call earlier this year. One of my specialist nurses rang to ask if I would like to go to a patients day. After much deliberation Rachael and I went. The day was being run by a wonderful charity called Beating Bowel Cancer and I havnt looked back since (well maybe on the odd bad day). I have met some amazing people and their families. Been to some amazing fundraising events and intend going to many more! Oh and Im not embarrased to say bum or poo in public anymore!!
Friday, 31 August 2012
From then till now!
So 2008 comes to an end and I take a deep breath and wait to see what life throws at me in 2009. Okay cancer is one battle,chemo a totally different battle but a brain haemmorage for goodness sake, because that is exactly what happened next, is a completely different kettle of fish.
January 17th started like any normal day. Went shopping,cooked dinner,watched some tv and went to bed about 11pm and that is when the headache from hell 'landed' 'erupted' one minute I was fine the next I was literally holding my head up to go to the bathroom. Standing at the sink I remember wondering why my left leg was shaking . . . . and then I was sitting sideways in the bath, legs hanging over the side being violently sick!
I felt too weak to try and scramble out of the bath and my voice what voice,couldnt seem to shout and despite hubby being asleep in the next room he carried on snoring. Lets face it ladies a lot of our other halves would sleep through the ceiling falling down! Rachael was the only other person in the house and her bedroom was downstairs. This is where our scary (not,unless you are another dog) staf Daisy came into play barking non stop until Rach got up and came to my rescue again. Funny that I didnt want the damn dog as we had cats but thats another story.
Okay having been helped out of the bath Rachael decided to phone an ambulance, we werent sure if this was just a delayed reaction to chemo, but I hadnt had any for 3 months or maybe the neutropenia hadnt quite sorted itself. Fast response medic arrived and everything seemed spot on,temperatue normal,blood pressure ok so what was going on. He asked if I wanted to go and see a doctor at hosp and I thought perhaps I should. Had I not gone to the hosp, laid down and gone to sleep who knows.
I can remember talking to the ambulance crew, nurse at the hosp and then I woke up in a hosp bed a drain in my back,wires and tubes everywhere. Imagine my suprise to find it was friday evening, nearly a whole day lost. Lots had happened none of which I can remember including having coils fitted to stop the bleed.I had suffered a subarachnoid haemorrage. 33% of people dont make it,33% have lasting damage such as memory loss and 33% walk away virtually unscathed. Luck on my side again? I just know I had once again faced my own mortality.
The rest of the year passed fairly uneventfully apart from the birth of grandson number three. I wasnt allowed to drive for 6 long and frustrating months, a small price to pay. Incidentally I will introduce you to the rest of the family in another edition!!
Oh hell here comes 2010 and this time I face it head held high, not literally like a year ago! I had to be ready for anything life had ready for me. Come on then I shouted come and get me Im ready. Oh buggar it did a scan in April showed a new lesion on my right lung. After the usual appointments my lung consultant decided I was a good candidate for RFA(Radio Frequency Ablation) in his words lets fry this one out . . nice!.So in June, the same week as previous hospital ventures,I was in and out of hosp in three days how amazing and hardly any recovery time. The only downside I dont like about RFA is there isnt any sample for histology but would still recommend to anyone. Oh and also became nan to two more grandsons this year.
Are you bored yet because here comes 2011, last year and you guessed it scan showed another lesion in right lung. RFA? No to near the edge of lung so in August another thoracotomy, not going to go over all the ins and outs just that they had to reopen the old scar and yes it bloody hurt!! Histology came back . .malignant.My oncologist wanted to start chemo again but a PET scan had shown hot spots between right lung and ribs. Eventually after much toing and froing my consultant decided to 'get in there and have a look' and 4 days before Christmas he did just that opening the same scar which he had so carefully patched up four months earlier. Finding nothing strange wahoo! However this ment I had missed the six week window for chemo oh dear thats a shame!!
So there we are. Its now 2012 and two clear scans and a clear colonoscopy so far. Just waiting for scan results again. Question is can I actually have a surgery free year??
January 17th started like any normal day. Went shopping,cooked dinner,watched some tv and went to bed about 11pm and that is when the headache from hell 'landed' 'erupted' one minute I was fine the next I was literally holding my head up to go to the bathroom. Standing at the sink I remember wondering why my left leg was shaking . . . . and then I was sitting sideways in the bath, legs hanging over the side being violently sick!
I felt too weak to try and scramble out of the bath and my voice what voice,couldnt seem to shout and despite hubby being asleep in the next room he carried on snoring. Lets face it ladies a lot of our other halves would sleep through the ceiling falling down! Rachael was the only other person in the house and her bedroom was downstairs. This is where our scary (not,unless you are another dog) staf Daisy came into play barking non stop until Rach got up and came to my rescue again. Funny that I didnt want the damn dog as we had cats but thats another story.
Okay having been helped out of the bath Rachael decided to phone an ambulance, we werent sure if this was just a delayed reaction to chemo, but I hadnt had any for 3 months or maybe the neutropenia hadnt quite sorted itself. Fast response medic arrived and everything seemed spot on,temperatue normal,blood pressure ok so what was going on. He asked if I wanted to go and see a doctor at hosp and I thought perhaps I should. Had I not gone to the hosp, laid down and gone to sleep who knows.
I can remember talking to the ambulance crew, nurse at the hosp and then I woke up in a hosp bed a drain in my back,wires and tubes everywhere. Imagine my suprise to find it was friday evening, nearly a whole day lost. Lots had happened none of which I can remember including having coils fitted to stop the bleed.I had suffered a subarachnoid haemorrage. 33% of people dont make it,33% have lasting damage such as memory loss and 33% walk away virtually unscathed. Luck on my side again? I just know I had once again faced my own mortality.
The rest of the year passed fairly uneventfully apart from the birth of grandson number three. I wasnt allowed to drive for 6 long and frustrating months, a small price to pay. Incidentally I will introduce you to the rest of the family in another edition!!
Oh hell here comes 2010 and this time I face it head held high, not literally like a year ago! I had to be ready for anything life had ready for me. Come on then I shouted come and get me Im ready. Oh buggar it did a scan in April showed a new lesion on my right lung. After the usual appointments my lung consultant decided I was a good candidate for RFA(Radio Frequency Ablation) in his words lets fry this one out . . nice!.So in June, the same week as previous hospital ventures,I was in and out of hosp in three days how amazing and hardly any recovery time. The only downside I dont like about RFA is there isnt any sample for histology but would still recommend to anyone. Oh and also became nan to two more grandsons this year.
Are you bored yet because here comes 2011, last year and you guessed it scan showed another lesion in right lung. RFA? No to near the edge of lung so in August another thoracotomy, not going to go over all the ins and outs just that they had to reopen the old scar and yes it bloody hurt!! Histology came back . .malignant.My oncologist wanted to start chemo again but a PET scan had shown hot spots between right lung and ribs. Eventually after much toing and froing my consultant decided to 'get in there and have a look' and 4 days before Christmas he did just that opening the same scar which he had so carefully patched up four months earlier. Finding nothing strange wahoo! However this ment I had missed the six week window for chemo oh dear thats a shame!!
So there we are. Its now 2012 and two clear scans and a clear colonoscopy so far. Just waiting for scan results again. Question is can I actually have a surgery free year??
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