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!

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!

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.