Monday 22.05.2017
So it's been a good weekend! I haven't manage to sleep too well at night but I have been resting well during the day so it sort of balances out - a good night's sleep will become the norm again soon I am sure. I have spent the weekend trying to increase moving around to build up the strength especially in my legs that are so weak and feeble at the moment it's ridiculous. I look like a 90 year old climbing the stairs and at stair nine I then have to haul myself up the last few steps clinging like mad with both hands to the bannister! I have also managed to help Reno cook a Sunday Roast! I just wanted things to generally be as normal as possible and great news........ I have not had any mouth wash since Friday 19.05.2017 and I am managing to chew food!! I feel this is a big step towards my mouth getting back to normal and not having to mash my food (which I have been doing for about 6 weeks now) feels so good!! Can't say too much for the taste still but that's not too big an issue so long as I can eat that's all that matters - plus I think now that I am chewing again my teeth will feel less sharp - especially if Reno really does give me that bit of wood to gnaw on as he keeps threatening - bless him!!!
Today I have had another appointment with the breast specialist nurse and my surgeon. Surgery is going ahead provided I am well and strong of course, mid June! So much to take on board - all the do's and don'ts, how incapacitated I am going to be after surgery, the risks etc. etc. and what bras I need to buy from Marks and Spencer as I will have to put one on straight after surgery!!! But, the forms are all signed and boy am I ready!!! Bring it on!!! Let's do this!!!
One slightly comical incident today whilst I was at the breast clinic with the surgeon - "Let's get you measured up" she said " come behind the curtain". As I sat on the couch and started to undress the surgeon asked "where did you get those trousers? I really like those" When I said I couldn't remember she quick as a flash was reaching round the back of me looking for the label!! " F&F" she proclaimed "wow that's Tesco - they're great for Tesco's" I just found it really funny that there she is looking for my trouser label while I am sat there with nothing on my top half waiting for breast measurement for surgery - guess you had to be there!
So all sorted now I am just concentrating on eating well a little more exercise each day to get me stronger along with restful times for my body to continue it's recovery.
Monday, 22 May 2017
Friday, 19 May 2017
I'm Back! Lets catch up!
Thursday 18.05.2017
Hello again to all my blog readers so sorry it's been a while but as Sam blogged I have been in hospital again returning home Monday 15.05.2017 early evening. Unfortunately the chemo got me again and I ended up being taken into hospital by ambulance during the very early hours of Monday 8.05.17. It all started with lower back and pelvic pain which I now know was caused by the chemo attacking my nerves and muscles, the pain grew and grew until it was excruciating and when gas and air didn't help the ambulance crew had to call a paramedic to try and give me morphine intravenously before they would move me on the journey to hospital. Unfortunately the paramedic after trying 5 times to find a vein he could put the morphine in had to give up but gave it straight into my upper arm which works but not quite as quickly. On the way to hospital my temperature was also spiking so they were concerned about my infection levels once again. Rightly so because it turns out I was once again not only in pain but Neutropenic Sepsis inspite of all the measures that had been put in place to prevent it! That Chemo is definitely out to get me!!! Anyway because there was no room on the Oncology Ward I spent the day in a side room to reduce the risk of infection to me on the assessment unit and then moved to the oncology ward late Monday evening. I was sorted once again with a syringe driver administering diamorphine and cocaine mouthwash to try and sort the oral thrush which also returned very quickly along with my skin on my hands peeling like a lizard!! Anyway as always I received the best care I could wish for and am now back home feeling very tired and weak but improving slowly day by day building and gaining strength bit by bit. I feel about 90 but hey I'm here to tell the tale!
On Thursday 11th May I was told I was being taken for an ultra sound scan to see how things were progressing. So let's get to the good news - first I had a mammogram and then the doctor came through to do the ultra sound. I asked the nurse if I would be able to see the screen for myself and she assured me the doctor would talk me through everything. I so wished Reno was with me. So the doctor got started and within a couple of minutes I heard the words "I can no longer see your tumour on the screen" I burst into tears (Why is it that I don't cry when I hear the bad bits of news and yet I am a mess whenever I hear good news?) "Please look in my armpit too" I said because I wanted to be sure that there was nothing new to see there either. The doctor said once the nurse had helped me put myself back together he would talk me through all the images. It was amazing he showed me the images taken on January the 6th which is when they inserted the marker into my tumour and then showed the images from that day and sure enough the tumour is not visible. The doctor explained that of course the images do not show single rogue cancer cells and these will only be seen if they are there under microscopic conditions when I have tissue and lymph nodes removed during surgery.
The main thing is the chemo has obviously been doing it's job and I can almost forgive it for putting me into hospital twice so poorly!
Once back on the ward I called Reno to give him the news and he was of course thrilled as was Sam when she visited that evening along with all the staff on the ward too as the news was communicated during staff change over. The next day my oncologist Dr Ram came to see me and apologised that I had been affected by the chemo so badly again and assured me that I would not be getting the last two doses of the chemical that causes all the problems as my body really couldn't deal with any more. He also told me that I needed to rest and eat plenty so that they could get me home.
I was hoping that I would be home during the weekend but the nurses made me see sense along with the physiotherapists that I really wasn't strong enough and Monday was there preferable option. So I accepted what they said - deep down I know they were right - just walking to the loo was like a marathon and after washing and dressing I would sleep for about an hour!
Dr Ram came to see me again on Monday 15th and said he was happy for me to go home later that day and Rachel my oncology nurse would be coming to see me to start to discuss surgery! Wow I wasn't expecting that! When Rachel came she explained that Dr Ram had confirmed there would be no more chemo as such before surgery but I would still have Herceptin which I know has to continue every three weeks for a year, and also an appointment had been made for me for Wednesday 17.05.17 to see the surgeon Miss Mortimer to try and book a slot for my surgery! As soon as she left I phoned Reno as I knew he would want to be there with me and he arranged to have the day off.
Wednesday 17.5.17 turned out to be a long day! Reno and I arrived to see the surgeon and after sometime of waiting were called into one of the smaller rooms by a nurse who explained that apparently today I was going to have my pre-operation assessment! A total surprise to me! The nurse suggested that as Miss Mortimer was still busy with a patient we do the assessment first and then come back - so off we went - they were happy with my blood which had been checked when I was discharged and so continued on to the ECG which was apparently fine then we went onto blood pressure - would you believe it - all the problems I had had over the past few weeks never once was my blood pressure a problem but today it was too high for their liking! Well we had been waiting around a while , I was getting hungry and the assessment had been sprung on me - so I was guessing that must be the cause. The nurse said it would need checking again but we could now go back to clinic to see the surgeon. Once Miss Mortimer arrived she discussed my options for surgery ( I don't want to go into too much detail yet as I am still making decisions - it's quite an emotional and personal thing to think about the options given and it takes time and discussion and looking ahead) and proceeded to say that they wanted to operate sooner rather than later as if there are any rogue cells they don't want them to have time to grow - so the plan is that I will have surgery around the middle of June - 6 weeks at least before I ever imagined it would be thought about! I have another appointment on Monday 22nd May to discuss things further with the surgeon and then hopefully a better idea on when it will all happen. We then had to go back to the pre op assessment unit to get my blood pressure re-checked but ....you guessed it..... still too high! It was suggested that we purchase a monitor and I take it regularly at home for a few weeks recording it each time because in a relaxed atmosphere it's probably fine - so that's exactly what we are doing! It will be checked again nearer the operation and hopefully all will be well! By the time we left the hospital it was 2.45p.m.! What a day!
So much to take on board but I am so excited to look forward to another very positive step on this journey - I have said it before - such a tough journey but with my family at my side with me all the way it's a journey that I am making great progress at and inspite of all the bad bits my mind is only focused on the good - and for that I am truly thankful and blessed.
Hello again to all my blog readers so sorry it's been a while but as Sam blogged I have been in hospital again returning home Monday 15.05.2017 early evening. Unfortunately the chemo got me again and I ended up being taken into hospital by ambulance during the very early hours of Monday 8.05.17. It all started with lower back and pelvic pain which I now know was caused by the chemo attacking my nerves and muscles, the pain grew and grew until it was excruciating and when gas and air didn't help the ambulance crew had to call a paramedic to try and give me morphine intravenously before they would move me on the journey to hospital. Unfortunately the paramedic after trying 5 times to find a vein he could put the morphine in had to give up but gave it straight into my upper arm which works but not quite as quickly. On the way to hospital my temperature was also spiking so they were concerned about my infection levels once again. Rightly so because it turns out I was once again not only in pain but Neutropenic Sepsis inspite of all the measures that had been put in place to prevent it! That Chemo is definitely out to get me!!! Anyway because there was no room on the Oncology Ward I spent the day in a side room to reduce the risk of infection to me on the assessment unit and then moved to the oncology ward late Monday evening. I was sorted once again with a syringe driver administering diamorphine and cocaine mouthwash to try and sort the oral thrush which also returned very quickly along with my skin on my hands peeling like a lizard!! Anyway as always I received the best care I could wish for and am now back home feeling very tired and weak but improving slowly day by day building and gaining strength bit by bit. I feel about 90 but hey I'm here to tell the tale!
On Thursday 11th May I was told I was being taken for an ultra sound scan to see how things were progressing. So let's get to the good news - first I had a mammogram and then the doctor came through to do the ultra sound. I asked the nurse if I would be able to see the screen for myself and she assured me the doctor would talk me through everything. I so wished Reno was with me. So the doctor got started and within a couple of minutes I heard the words "I can no longer see your tumour on the screen" I burst into tears (Why is it that I don't cry when I hear the bad bits of news and yet I am a mess whenever I hear good news?) "Please look in my armpit too" I said because I wanted to be sure that there was nothing new to see there either. The doctor said once the nurse had helped me put myself back together he would talk me through all the images. It was amazing he showed me the images taken on January the 6th which is when they inserted the marker into my tumour and then showed the images from that day and sure enough the tumour is not visible. The doctor explained that of course the images do not show single rogue cancer cells and these will only be seen if they are there under microscopic conditions when I have tissue and lymph nodes removed during surgery.
The main thing is the chemo has obviously been doing it's job and I can almost forgive it for putting me into hospital twice so poorly!
Once back on the ward I called Reno to give him the news and he was of course thrilled as was Sam when she visited that evening along with all the staff on the ward too as the news was communicated during staff change over. The next day my oncologist Dr Ram came to see me and apologised that I had been affected by the chemo so badly again and assured me that I would not be getting the last two doses of the chemical that causes all the problems as my body really couldn't deal with any more. He also told me that I needed to rest and eat plenty so that they could get me home.
I was hoping that I would be home during the weekend but the nurses made me see sense along with the physiotherapists that I really wasn't strong enough and Monday was there preferable option. So I accepted what they said - deep down I know they were right - just walking to the loo was like a marathon and after washing and dressing I would sleep for about an hour!
Dr Ram came to see me again on Monday 15th and said he was happy for me to go home later that day and Rachel my oncology nurse would be coming to see me to start to discuss surgery! Wow I wasn't expecting that! When Rachel came she explained that Dr Ram had confirmed there would be no more chemo as such before surgery but I would still have Herceptin which I know has to continue every three weeks for a year, and also an appointment had been made for me for Wednesday 17.05.17 to see the surgeon Miss Mortimer to try and book a slot for my surgery! As soon as she left I phoned Reno as I knew he would want to be there with me and he arranged to have the day off.
Wednesday 17.5.17 turned out to be a long day! Reno and I arrived to see the surgeon and after sometime of waiting were called into one of the smaller rooms by a nurse who explained that apparently today I was going to have my pre-operation assessment! A total surprise to me! The nurse suggested that as Miss Mortimer was still busy with a patient we do the assessment first and then come back - so off we went - they were happy with my blood which had been checked when I was discharged and so continued on to the ECG which was apparently fine then we went onto blood pressure - would you believe it - all the problems I had had over the past few weeks never once was my blood pressure a problem but today it was too high for their liking! Well we had been waiting around a while , I was getting hungry and the assessment had been sprung on me - so I was guessing that must be the cause. The nurse said it would need checking again but we could now go back to clinic to see the surgeon. Once Miss Mortimer arrived she discussed my options for surgery ( I don't want to go into too much detail yet as I am still making decisions - it's quite an emotional and personal thing to think about the options given and it takes time and discussion and looking ahead) and proceeded to say that they wanted to operate sooner rather than later as if there are any rogue cells they don't want them to have time to grow - so the plan is that I will have surgery around the middle of June - 6 weeks at least before I ever imagined it would be thought about! I have another appointment on Monday 22nd May to discuss things further with the surgeon and then hopefully a better idea on when it will all happen. We then had to go back to the pre op assessment unit to get my blood pressure re-checked but ....you guessed it..... still too high! It was suggested that we purchase a monitor and I take it regularly at home for a few weeks recording it each time because in a relaxed atmosphere it's probably fine - so that's exactly what we are doing! It will be checked again nearer the operation and hopefully all will be well! By the time we left the hospital it was 2.45p.m.! What a day!
So much to take on board but I am so excited to look forward to another very positive step on this journey - I have said it before - such a tough journey but with my family at my side with me all the way it's a journey that I am making great progress at and inspite of all the bad bits my mind is only focused on the good - and for that I am truly thankful and blessed.
Wednesday, 10 May 2017
Hi it's Sam!
Wednesday 10th May
Hi all you blog readers, this is Sam, Carols daughter. Just to let you know that mum is once again in hospital, same reasons as before but she will update her blog as soon as she is home and well enough, hopefully in the not too distant future.
Hi all you blog readers, this is Sam, Carols daughter. Just to let you know that mum is once again in hospital, same reasons as before but she will update her blog as soon as she is home and well enough, hopefully in the not too distant future.
Thursday, 4 May 2017
6th Treatment done! 3/4 the way there!
Thursday 04.05.2017 - So on Tuesday I had treatment number 6 and am now three quarters of the way through my chemotherapy - I left the hospital Tuesday fully equipped with all sorts of medication so that I am ready for any side effect that wants to be thrown at me! I will rattle well in a couple of weeks but who cares! I have antibiotics for oral thrush, cocaine mouthwash for if my mouth becomes sore as this allows me to continue to eat, steroids to hopefully lessen any side effects, more antibiotics to combat any other infection which may try to occur, cream to ease 'wind burn' on my face and five injections to go into my belly to boost my white blood cells!
So far not too bad, I have a bit of 'wind burn' and my mouth is a little sore but no infections raising their ugly heads! My hands are peeling just like a lizard losing its skin but that's not a problem - I have copious amounts of cream to apply as well as some cotton gloves to keep the cream on once smothered!
Generally since my last post on Friday 28th I am feeling quite well just extremely tired which is always to be expected. I am just listening to my body the whole time and if it says sleep I do just that - I know that sleep is all part of the process of healing. I am not too comfortable with the thought of doing my injections! So my sister, bless her, has come over Wednesday and today during her lunch break and done them for me! On Friday I am going to have a go with her watching me as she is going away for the weekend but if I am still not comfortable doing it I know that Reno has no qualms at all about doing the last two on Saturday and Sunday! I am managing to eat good (soft) meals and having plenty of fluids as instructed, with intermittent ice lollies to help try and keep my mouth cool! My temperature is behaving itself thank goodness and finding a pattern of taking it mid morning, mid afternoon and again at about 8pm works without me getting too paranoid taking it too often. Had a great nights sleep last night but the previous two were not so good but again I don't mind that as I appreciate how long I sleep during the day must have some impact. So all in all everything is jogging along nicely and fingers crossed it continues that way!
Before I finish for today I forgot to mention a couple of funny things that happened whilst I was in hospital which brightened up some quite serious days. The first was when I was given the first cocaine mouthwash I was still communicating by pen and paper to my sister and the doctor. As I was swirling this liquid around my mouth, bearing in mind I was also on diamorphine at the time, my sister asked me how the mouthwash was making my mouth feel. I wrote down 'Wonderful my mouth is going totally numb and so I can feel no pain! However, I am a little scared of all the little Goblins I can see running round the ward floor!' She looked really alarmed as did the doctor and said 'are you hallucinating?' at which I smiled the best way I could with my mouth still holding the cocaine and wrote down 'No, only joking'. Once I got rid of the mouthwash and could speak again we had quite a giggle about it!
The following day both my sisters visited together. My hands had turned quite a strange purple/red colour and I was sat up in bed with a cup of water lodged on my lap with one of my hands behind it. All of a sudden my sister grabbed my hand and said 'Your hands are going really strange - we need to get them looked at.' Needless to say the cup of water tipped over and I could feel it trickling down between my legs on to the bed just like I was wetting the bed!!! Well both my sisters and I giggled and giggled but then I said that one of them would have to come to the loo with me and help me change as now I had a drip in one arm and the diamorphine being fed into the other! So what happens? they decide to toss a coin to see who is going to help me in the loo department and who was going to make a cup of tea and ask a nurse to sort out the wet bed! My younger sister lost the toss so I guess you can guess which job she got!!! Anyway it all made for an amusing afternoon with us thinking that maybe they would be banned from visiting together in future!!!!
I am so glad that these amusing things happen - they all add a bit of brightness to some of the tougher days and being able to recount them makes me laugh which is a great medicine! One that doesn't make me rattle.
Feeling good today!
So far not too bad, I have a bit of 'wind burn' and my mouth is a little sore but no infections raising their ugly heads! My hands are peeling just like a lizard losing its skin but that's not a problem - I have copious amounts of cream to apply as well as some cotton gloves to keep the cream on once smothered!
Generally since my last post on Friday 28th I am feeling quite well just extremely tired which is always to be expected. I am just listening to my body the whole time and if it says sleep I do just that - I know that sleep is all part of the process of healing. I am not too comfortable with the thought of doing my injections! So my sister, bless her, has come over Wednesday and today during her lunch break and done them for me! On Friday I am going to have a go with her watching me as she is going away for the weekend but if I am still not comfortable doing it I know that Reno has no qualms at all about doing the last two on Saturday and Sunday! I am managing to eat good (soft) meals and having plenty of fluids as instructed, with intermittent ice lollies to help try and keep my mouth cool! My temperature is behaving itself thank goodness and finding a pattern of taking it mid morning, mid afternoon and again at about 8pm works without me getting too paranoid taking it too often. Had a great nights sleep last night but the previous two were not so good but again I don't mind that as I appreciate how long I sleep during the day must have some impact. So all in all everything is jogging along nicely and fingers crossed it continues that way!
Before I finish for today I forgot to mention a couple of funny things that happened whilst I was in hospital which brightened up some quite serious days. The first was when I was given the first cocaine mouthwash I was still communicating by pen and paper to my sister and the doctor. As I was swirling this liquid around my mouth, bearing in mind I was also on diamorphine at the time, my sister asked me how the mouthwash was making my mouth feel. I wrote down 'Wonderful my mouth is going totally numb and so I can feel no pain! However, I am a little scared of all the little Goblins I can see running round the ward floor!' She looked really alarmed as did the doctor and said 'are you hallucinating?' at which I smiled the best way I could with my mouth still holding the cocaine and wrote down 'No, only joking'. Once I got rid of the mouthwash and could speak again we had quite a giggle about it!
The following day both my sisters visited together. My hands had turned quite a strange purple/red colour and I was sat up in bed with a cup of water lodged on my lap with one of my hands behind it. All of a sudden my sister grabbed my hand and said 'Your hands are going really strange - we need to get them looked at.' Needless to say the cup of water tipped over and I could feel it trickling down between my legs on to the bed just like I was wetting the bed!!! Well both my sisters and I giggled and giggled but then I said that one of them would have to come to the loo with me and help me change as now I had a drip in one arm and the diamorphine being fed into the other! So what happens? they decide to toss a coin to see who is going to help me in the loo department and who was going to make a cup of tea and ask a nurse to sort out the wet bed! My younger sister lost the toss so I guess you can guess which job she got!!! Anyway it all made for an amusing afternoon with us thinking that maybe they would be banned from visiting together in future!!!!
I am so glad that these amusing things happen - they all add a bit of brightness to some of the tougher days and being able to recount them makes me laugh which is a great medicine! One that doesn't make me rattle.
Feeling good today!
Friday, 28 April 2017
OMG What a couple of weeks!!!
Friday 28th April 2017
My apologies for not updating my blog sooner but the past two weeks have been very eventful! Here is the story:-
From Friday 14th April my mouth unfortunately just became more sore each day to the point where from Sunday 16th to Tuesday 18th it was as much as I could do just to take sips of water and even the water felt like it was burning my mouth. Talking was an issue too. Reno had to go back to work early on the Tuesday so my sister said she would call in before work to see how I was doing. On the Monday, Somersham ward had given us some medication to drop onto my tongue but even this caused a burning sensation too so, when my sister arrived she phoned Somersham ward to get some more advice. They said I needed to see my GP who would be able to prescribe something for me. We managed to get an appointment and subsequently a prescription and returned home to start the treatment. I really was in a lot of pain but did my best to do as the dr had said and try the medication. By Wednesday 19th there was no improvement at all I could still only just manage sips of water so my sister once again contacted the surgery so that we could get some advice over the phone. A GP called back and did another prescription which included some pain relief patches so that maybe I could try and get more inside me than just sips of water. However, nothing improved as the day went on and by teatime my temperature began to spike. It seemed to be up really high one minute and then normal again a few minutes later. By this time both my sisters and Samantha were getting concerned and wanted to ring the emergency number I have which I am supposed to ring should my temperature rise above 37.5 or I feel unwell. But, me being stubborn, kept insisting that I didn't actually feel unwell it was just that my mouth was so sore. By about 9.15p.m. my sister decided that whether I liked it or not she was ringing the emergency number. Thank goodness she did. My other sister arrived to look after Sam because we were told I had to go straight to hospital as quickly as possible. I now know that phone call could well have saved my life.
When we arrived at the hospital a cannula was put into my hand and antibiotics given as well as blood taken which was sent straight to the lab so that results could be seen as quickly as possible. Then the nurse proceeded to tell me that whenever my temperature spikes above 37.5 I must always ring even if I think its a waste of time I must still ring. She really wanted to make me understand that it could mean there is a problem with white blood cells which would then make someone Neutropenic and this is life threatening, so she told me about a young lady of 33 who phoned in to say that her temperature had gone up but because she felt well she wasn't coming into hospital she was just letting them know. Against the hospitals advice the young lady stayed at home and was found dead in bed the next day. She certainly made me understand and also quite frightened me but I now know why she did. We went to the day room to await the blood test results. After about an hour and fifteen minutes the nurse came through and said 'Carol I am really sorry I have the results but you are not going to like what you hear.' My heart was pounding. 'Your white blood cells are at 0.0 and your infection levels are at 235' she said 'The infection level is double what it should be and you have
Neutropenic Sepsis' my thoughts went back to the young lady she had told me about before. 'Am I going to be ok?' I asked panicing. 'Yes' she said 'because you are here and we are going to admit you and look after you.'
Over the next couple of days until Saturday I had to have fluids intravenously to rehydrate me, 8 Litres in total, and 2 units of blood to boost my own. My mouth continued to be sore until eventually after trying many different mouthwashes which all felt like they were burning me, I was actually communicating by pen and paper and the pain was getting unbearable. Also I still had not eaten and felt really quite weak. A doctor came to see me once again and suggested we try a cocaine mouthwash and a diamorphine syringe driver which is where diamorphine is automatically fed into your arm. So the syringe driver was set up in my arm and the cocaine mouthwash was brought to me.
I carefully parted my lips and poured the small amount of mouthwash in and was told to swill it around my mouth for as long as I could before spitting it out. This I did and once I had spat it out I said 'Thank you so much' My mouth was numb but I was able to speak, drink and put soft food in my mouth and swallow which was exactly what I needed to do to build myself up again and get better. I actually cried because I felt so relieved that for about 2 hrs that the effects of the cocaine lasted I was actually pain free. The nursing staff were pleased that they had found the combination that was going to work for me! So, the mouthwash came about 5 mins before each meal and at bedtime and whilst my mouth was numb I ate and drank as much as possible! I still couldn't chew but that didn't matter the main thing was that I could get nourishment and no longer needed to be drip fed fluids because I could drink plenty myself. From then on I was still given intravenous antibiotics but I really made good progress and was eventually discharged on Tuesday 25th April 7.45 p.m.
During the time I was in hospital I also had a change in my skin, my face looked and felt like it had wind burn and my hands went a very purple/red colour. Apparently another side effect from the chemo which eventually made my face peel and my hands (which are still peeling and I look a bit like a lizard shedding its skin!) I was given cream to apply which thankfully made the areas feel less warm!
All during the time I was in hospital my sisters once again were amazing even my nephew and his wife were helping with school runs for Sam and dropping her off at the hospital for visiting. My sisters shared looking after Sam and staying overnight and at the weekend Reno came home and took over from them. They are all so wonderful I cannot thank them enough. Reno arranged to come home on Wednesday evening 26.04.2017 and have the following two days at home so that he could come with me to my Oncology appointment on Thursday 27.4.17.
All I have done since coming home is rest and been waited on hand and foot!
We went to the oncologist yesterday who said he is very pleased with the way things are going but they are going to lower the dose of chemo I am due to have on May 2nd to try and reduce the side effects. He examined me and can no longer feel the tumour!!!! 'It's working' he said. Hoorah!!!!
He is arranging for me to have more scans and will see me again in four weeks (just after my 7th treatment of 8) when we will start to talk about surgery. He tells me that provided everything goes ok with my other treatments (and if they don't at least they know the combination of drugs I will need to treat me) then it should only take me 3-4 weeks recovery after my last treatment to be ready for surgery. That means that by the middle to end of July my chemo will be done with and so too will the surgery! When we left I was so chuffed that he couldn't feel my tumour that I had a real boost and thought even if I have to suffer with a sore mouth from now until surgery then I really can cope and I can get through it. I just have to make sure I eat well, drink plenty and rest even more. He also gave me a sick certificate for four months so I don't even have to think about work, I just have to concentrate on me and keeping as well as I can and that's exactly what I intend to do.
Today I have felt quite good in myself and think I look really well compared to a few days ago but still having to use the mouthwash to be able to eat. I am hoping that over the weekend this will improve greatly and my mouth will stop being sore ready for chemo on Tuesday. (The oncologist says the reason my mouth is so sore is not the thrush (that's all gone now) its because just like my face and hands my tongue has been stripped of a layer of skin underneath!)
Anyway, as you can see quite an eventful couple of weeks but I stay strong and expect the worst after treatment then when the worst doesn't happen I can look on it as a bonus!
Lets bring it on and get this cancer beat!
My apologies for not updating my blog sooner but the past two weeks have been very eventful! Here is the story:-
From Friday 14th April my mouth unfortunately just became more sore each day to the point where from Sunday 16th to Tuesday 18th it was as much as I could do just to take sips of water and even the water felt like it was burning my mouth. Talking was an issue too. Reno had to go back to work early on the Tuesday so my sister said she would call in before work to see how I was doing. On the Monday, Somersham ward had given us some medication to drop onto my tongue but even this caused a burning sensation too so, when my sister arrived she phoned Somersham ward to get some more advice. They said I needed to see my GP who would be able to prescribe something for me. We managed to get an appointment and subsequently a prescription and returned home to start the treatment. I really was in a lot of pain but did my best to do as the dr had said and try the medication. By Wednesday 19th there was no improvement at all I could still only just manage sips of water so my sister once again contacted the surgery so that we could get some advice over the phone. A GP called back and did another prescription which included some pain relief patches so that maybe I could try and get more inside me than just sips of water. However, nothing improved as the day went on and by teatime my temperature began to spike. It seemed to be up really high one minute and then normal again a few minutes later. By this time both my sisters and Samantha were getting concerned and wanted to ring the emergency number I have which I am supposed to ring should my temperature rise above 37.5 or I feel unwell. But, me being stubborn, kept insisting that I didn't actually feel unwell it was just that my mouth was so sore. By about 9.15p.m. my sister decided that whether I liked it or not she was ringing the emergency number. Thank goodness she did. My other sister arrived to look after Sam because we were told I had to go straight to hospital as quickly as possible. I now know that phone call could well have saved my life.
When we arrived at the hospital a cannula was put into my hand and antibiotics given as well as blood taken which was sent straight to the lab so that results could be seen as quickly as possible. Then the nurse proceeded to tell me that whenever my temperature spikes above 37.5 I must always ring even if I think its a waste of time I must still ring. She really wanted to make me understand that it could mean there is a problem with white blood cells which would then make someone Neutropenic and this is life threatening, so she told me about a young lady of 33 who phoned in to say that her temperature had gone up but because she felt well she wasn't coming into hospital she was just letting them know. Against the hospitals advice the young lady stayed at home and was found dead in bed the next day. She certainly made me understand and also quite frightened me but I now know why she did. We went to the day room to await the blood test results. After about an hour and fifteen minutes the nurse came through and said 'Carol I am really sorry I have the results but you are not going to like what you hear.' My heart was pounding. 'Your white blood cells are at 0.0 and your infection levels are at 235' she said 'The infection level is double what it should be and you have
Neutropenic Sepsis' my thoughts went back to the young lady she had told me about before. 'Am I going to be ok?' I asked panicing. 'Yes' she said 'because you are here and we are going to admit you and look after you.'
Over the next couple of days until Saturday I had to have fluids intravenously to rehydrate me, 8 Litres in total, and 2 units of blood to boost my own. My mouth continued to be sore until eventually after trying many different mouthwashes which all felt like they were burning me, I was actually communicating by pen and paper and the pain was getting unbearable. Also I still had not eaten and felt really quite weak. A doctor came to see me once again and suggested we try a cocaine mouthwash and a diamorphine syringe driver which is where diamorphine is automatically fed into your arm. So the syringe driver was set up in my arm and the cocaine mouthwash was brought to me.
I carefully parted my lips and poured the small amount of mouthwash in and was told to swill it around my mouth for as long as I could before spitting it out. This I did and once I had spat it out I said 'Thank you so much' My mouth was numb but I was able to speak, drink and put soft food in my mouth and swallow which was exactly what I needed to do to build myself up again and get better. I actually cried because I felt so relieved that for about 2 hrs that the effects of the cocaine lasted I was actually pain free. The nursing staff were pleased that they had found the combination that was going to work for me! So, the mouthwash came about 5 mins before each meal and at bedtime and whilst my mouth was numb I ate and drank as much as possible! I still couldn't chew but that didn't matter the main thing was that I could get nourishment and no longer needed to be drip fed fluids because I could drink plenty myself. From then on I was still given intravenous antibiotics but I really made good progress and was eventually discharged on Tuesday 25th April 7.45 p.m.
During the time I was in hospital I also had a change in my skin, my face looked and felt like it had wind burn and my hands went a very purple/red colour. Apparently another side effect from the chemo which eventually made my face peel and my hands (which are still peeling and I look a bit like a lizard shedding its skin!) I was given cream to apply which thankfully made the areas feel less warm!
All during the time I was in hospital my sisters once again were amazing even my nephew and his wife were helping with school runs for Sam and dropping her off at the hospital for visiting. My sisters shared looking after Sam and staying overnight and at the weekend Reno came home and took over from them. They are all so wonderful I cannot thank them enough. Reno arranged to come home on Wednesday evening 26.04.2017 and have the following two days at home so that he could come with me to my Oncology appointment on Thursday 27.4.17.
All I have done since coming home is rest and been waited on hand and foot!
We went to the oncologist yesterday who said he is very pleased with the way things are going but they are going to lower the dose of chemo I am due to have on May 2nd to try and reduce the side effects. He examined me and can no longer feel the tumour!!!! 'It's working' he said. Hoorah!!!!
He is arranging for me to have more scans and will see me again in four weeks (just after my 7th treatment of 8) when we will start to talk about surgery. He tells me that provided everything goes ok with my other treatments (and if they don't at least they know the combination of drugs I will need to treat me) then it should only take me 3-4 weeks recovery after my last treatment to be ready for surgery. That means that by the middle to end of July my chemo will be done with and so too will the surgery! When we left I was so chuffed that he couldn't feel my tumour that I had a real boost and thought even if I have to suffer with a sore mouth from now until surgery then I really can cope and I can get through it. I just have to make sure I eat well, drink plenty and rest even more. He also gave me a sick certificate for four months so I don't even have to think about work, I just have to concentrate on me and keeping as well as I can and that's exactly what I intend to do.
Today I have felt quite good in myself and think I look really well compared to a few days ago but still having to use the mouthwash to be able to eat. I am hoping that over the weekend this will improve greatly and my mouth will stop being sore ready for chemo on Tuesday. (The oncologist says the reason my mouth is so sore is not the thrush (that's all gone now) its because just like my face and hands my tongue has been stripped of a layer of skin underneath!)
Anyway, as you can see quite an eventful couple of weeks but I stay strong and expect the worst after treatment then when the worst doesn't happen I can look on it as a bonus!
Lets bring it on and get this cancer beat!
Friday, 14 April 2017
Treatment 5 of 8! Getting there!!
Tuesday 11th April - Didn't have too good a night last night - woke several times and found it difficult to work out whether I was still on the boat or at home! Seriously it was a really weird feeling which I put down to the new steroids I started yesterday in preparation for the new course of chemo I start today. The new steroids should help with any side effects of the different drugs apparently. It was a long day today Reno and I arrived at the hospital at 9a.m. for my appointment but my drugs had not yet come up from pharmacy, by the time I had my cannula inserted and the anti sickness drug and saline it was 10.30 when we started with the hard core drugs the ones making me well again! These last four doses are all administered by drip so time seems to go a little slower and it was 3.10 p.m. by the time all the drugs had been fed in - however I felt absolutely fine - just tired which is the norm! Went home and rested for the rest of the evening.
Wednesday 12th April - Had a more restful night last night though I was awake for a two hour period between 2.30a.m. and 4.30a,m. as the nurse explained yesterday this is probably caused by the steroids so I am not too concerned as I can always nap during the day which I have done. I seem more tired than before with this treatment but apart from that so far so good!
Thursday 13th April - Went into work today after a better nights sleep. Have to admit I found it exhausting although Reno drove me there and picked me up again - it was impossible to catch up with much as there was so much to do from being on holiday but I have done what I can and have had a chat with my boss about getting some help in because I am not really sure how work is going to work out from now even two days a week may be too much when I appear to be needing so much more sleep and rest. Once home I rested up again and had a short sleep before my younger sister visited on her way home from work. It was nice of her to pop in and Reno was preparing dinner so she stayed too which kept me chatting about the holiday instead of falling asleep again which helped when it was bedtime! Today side effects are kicking in already - my mouth isn't sore but feels really strange and my taste is just awful - I am eating because I know I have to in order to build myself up again but it is so difficult to see a nice meal in front of you that you are looking forward to but then the first mouthful tastes rubbish and it's quite off putting. Trust me the blander the food is the better!!
Friday 14th April - Had a lay in today didn't wake until 6.00 a.m. and then dozed on and off until 8.45 a.m. Everything a bit of an effort and needed to rest after showering then dressing. Decided to go shopping with Reno but it all turned out to be a bit much and as soon as we returned I went to sleep whilst Reno and Sam did lunch. Taste and mouth are worse today plus I have niggling tummy ache (caused by constipation from the drugs - sorry but that's how it is!!) Eating and drinking just because I have to - seems like this is going to go on for some while! Just one good thing about it ........
Ice cream is not too bad at all!! So ice cream it is then breakfast, dinner and tea! My nails are starting to look a bit worse for wear so this evening I have paid them a bit of attention with nail cream and varnish which is recommended as the nails have a tendency to lift. Managed to iron a few items whilst sitting down this afternoon so am spending the evening in my favourite place ....... the conservatory where its bright and I can see the garden and nap whenever I feel like it!!!
All in all I have to say the symptoms are still not as bad as I had ever expected so I am very thankful and I have a lot to be grateful for - some people react more to the drugs but I feel fortunate with the little I have to put up with - it may seem like I grumble a lot but truly I shouldn't I really can cope with this and with only three treatments left I know I have the love and support all around me to get me through. I feel as strong as the day I was diagnosed and I intend to stay this strong until I am well and truly fit and healthy again!
Wednesday 12th April - Had a more restful night last night though I was awake for a two hour period between 2.30a.m. and 4.30a,m. as the nurse explained yesterday this is probably caused by the steroids so I am not too concerned as I can always nap during the day which I have done. I seem more tired than before with this treatment but apart from that so far so good!
Thursday 13th April - Went into work today after a better nights sleep. Have to admit I found it exhausting although Reno drove me there and picked me up again - it was impossible to catch up with much as there was so much to do from being on holiday but I have done what I can and have had a chat with my boss about getting some help in because I am not really sure how work is going to work out from now even two days a week may be too much when I appear to be needing so much more sleep and rest. Once home I rested up again and had a short sleep before my younger sister visited on her way home from work. It was nice of her to pop in and Reno was preparing dinner so she stayed too which kept me chatting about the holiday instead of falling asleep again which helped when it was bedtime! Today side effects are kicking in already - my mouth isn't sore but feels really strange and my taste is just awful - I am eating because I know I have to in order to build myself up again but it is so difficult to see a nice meal in front of you that you are looking forward to but then the first mouthful tastes rubbish and it's quite off putting. Trust me the blander the food is the better!!
Friday 14th April - Had a lay in today didn't wake until 6.00 a.m. and then dozed on and off until 8.45 a.m. Everything a bit of an effort and needed to rest after showering then dressing. Decided to go shopping with Reno but it all turned out to be a bit much and as soon as we returned I went to sleep whilst Reno and Sam did lunch. Taste and mouth are worse today plus I have niggling tummy ache (caused by constipation from the drugs - sorry but that's how it is!!) Eating and drinking just because I have to - seems like this is going to go on for some while! Just one good thing about it ........
Ice cream is not too bad at all!! So ice cream it is then breakfast, dinner and tea! My nails are starting to look a bit worse for wear so this evening I have paid them a bit of attention with nail cream and varnish which is recommended as the nails have a tendency to lift. Managed to iron a few items whilst sitting down this afternoon so am spending the evening in my favourite place ....... the conservatory where its bright and I can see the garden and nap whenever I feel like it!!!
All in all I have to say the symptoms are still not as bad as I had ever expected so I am very thankful and I have a lot to be grateful for - some people react more to the drugs but I feel fortunate with the little I have to put up with - it may seem like I grumble a lot but truly I shouldn't I really can cope with this and with only three treatments left I know I have the love and support all around me to get me through. I feel as strong as the day I was diagnosed and I intend to stay this strong until I am well and truly fit and healthy again!
Monday, 10 April 2017
What a wonderful holiday!!
Monday 10.04.2017 - Yesterday evening at approx. 9.30p.m. we arrived home after the most wonderful week on-board the our hired cruiser 'Radiant Emblem'. My sister and brother-in-law came with us and we have all returned home with a healthy glow! The beginning of the week was quite chilly but bright skies and the second half was bright sun shine, blue cloudless skies, Saturday and Sunday were both at times absolutely scorching! I have done so little all week being waited on hand and foot and I really didn't want to come home, I was so relaxed it was totally Wonderful - Brilliant - Amazing! Reno and Sam have been amazing making sure that our 'crew' , me and themselves all have had a Great Holiday.
This morning we were up fairly early to go for my blood test. Three attempts!! The first two on the inside of my elbow didn't want to let go of any blood - not even a droplet! - maybe it was something to do with the baileys I drank on holiday! (I wondered what that beige liquid was in the syringe LOL!!) - the nurse decided the back of my hand maybe a better option and she was right the blood flowed just as required! We have spent the rest of the day slowly unpacking and getting washing, shopping done etc. and wait for it..........booking next years cruise on the broads!
At approx. 5 p.m. the hospital rang which really put me on edge - but all was ok! I can have treatment tomorrow. Hooray, Yippee, Yeah!!!!!! My red blood cells are a bit low but as I feel so well my treatment can go ahead this time but once again the nurse told me that if my count goes any lower I will need a blood transfusion. Apparently Spinach, Watercress, Dried Apricots, and Dark Chocolate are all very good for me to help increase my iron (red blood cells) so guess what Reno has been and brought this evening!! He is a gem.
Now going to rest for the remainder of the evening so that I am all chilled out for treatment at 9 a.m. in the morning - I am a little apprehensive but Reno will be with me and Sam will be studying and waiting at home - so how can it not be ok with so much love around me, so many family and friends hold me in their thoughts everything is gonna be okay.
This morning we were up fairly early to go for my blood test. Three attempts!! The first two on the inside of my elbow didn't want to let go of any blood - not even a droplet! - maybe it was something to do with the baileys I drank on holiday! (I wondered what that beige liquid was in the syringe LOL!!) - the nurse decided the back of my hand maybe a better option and she was right the blood flowed just as required! We have spent the rest of the day slowly unpacking and getting washing, shopping done etc. and wait for it..........booking next years cruise on the broads!
At approx. 5 p.m. the hospital rang which really put me on edge - but all was ok! I can have treatment tomorrow. Hooray, Yippee, Yeah!!!!!! My red blood cells are a bit low but as I feel so well my treatment can go ahead this time but once again the nurse told me that if my count goes any lower I will need a blood transfusion. Apparently Spinach, Watercress, Dried Apricots, and Dark Chocolate are all very good for me to help increase my iron (red blood cells) so guess what Reno has been and brought this evening!! He is a gem.
Now going to rest for the remainder of the evening so that I am all chilled out for treatment at 9 a.m. in the morning - I am a little apprehensive but Reno will be with me and Sam will be studying and waiting at home - so how can it not be ok with so much love around me, so many family and friends hold me in their thoughts everything is gonna be okay.
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