Feeling so confused - and I don't understand why????

2010-09-26T20:34:55Z

I was told that my cancer was terminal about 11 months ago. At that time they told me that I had between 6 months and 2 years to live. Since then I have had radiotherapy and chemotherapy, and have had a good response. I had my last chemo in May and have been so well since then that they have not done any further treatment. A couple of weeks ago the latest scan showed that everything is still good - and I won't need another scan until December.

So why do I feel so desperate? I keep wanting to talk about how I'm going to die - and no-one wants to listen. I guess I shouldn't be surprised about that!!! But no-one is prepared to let me discuss the possibility of dying - even though the doctors have told me my condition is still terminal. At one minute I am over the moon about how well everything is going, and then I get scared because one day the news will be bad.

How will I cope when I have a scan and it shows the cancer growing again? Everyone tells me how 'marvellous' I am that I have done so well - but does that mean I will be a failure later? Am I wrong and stupid to want to talk about the possibility that things will not always be this good? Should I just close my eyes and keep celebrating? What will I do when they tell me I have to start treatment again - and I know just what that involves?

I feel so very lucky to have been given the extra time to spend with the people that I love - but I am so scared about how I will feel when the news isn't so good. Is it wrong to talk about that? I feel so confused. I want to be happy - but there is a cloud hanging over my head. What a waste to spend this happy time worrying about the future - but I just can't stop it.

I guess I'm a total idiot!

My chemo journey - soft tissue sarcoma

2010-05-06T20:43:35Z

05/05/10

I have now completed my 4th, and final (for now) chemo. I had a blood transfusion at the start of the last treatment, and must admit that it was a great help. I was able to keep at least reasonably active for the 4 days I was in hospital and even managed to understand the book I was reading.

I returned home for my 3 days bedrest on Saturday, and my husband ensured that I had plenty of fruit juice to drink. The last time I had chemo I made the mistake of becoming dehydrated, and I cannot describe just how awful that felt. My husband presents me with a glass of fruit juice once every hour and I find that I can drink it - unlike other drinks such as tea, coffee, water, juice etc. This made such a tremendous difference - coupled with the extra blood!

I am now waiting for scans (on Monday) and an appointment with the specialist to say where we go from here, and how effective the treatment has been so far. To say that I am feeling nervous about this is putting it mildly! Today I found out that the consultant has put my appointment back for a week and I am totally devastated. My whole life is on hold while I wait to find out these results. I cannot decide whether I will be able to return to work or not (soon going into a no-pay scenario) and I don't know whether I will need more chemo. I don't know if I have responded to any of the treatments so far - although I am feeling healthier than I have done - and so don't know how long I have to live.

I can't even book a holiday until I have seen the consultant. Doesn't he care AT ALL???? How heartless can you get? He has put me down for another chemo starting the day after the appointment - but I won't know if it is going ahead or not until I have seen him. It also leaves me with very little time to organise the rest of my life if I DO go straight back into chemo treatments.

I think I actually hate my consultant!

04/04/10

I'm due to start my third chemo on Tuesday, bloods permitting. My last blood test showed that my platelets were low - so I have to have another test before they go ahead with the treatment. I am dreading it. I have to go into 'zombie' land again. I can't describe just how totally out of it I am when I have the treatment. I can't even seem to talk properly. I just keep telling myself that each treatment will extend my life that little bit further. Now THAT is something worth going to hell for!

I have been so tired over the last couple of weeks. Sleeping more and more, and resting after even a tiny bit of effort. Today was a good day though. I managed to contact the Easter bunny to hide some eggs in the garden (he may be 13, but he still loves his egg-hunt- and so do I). Then we went for a trip to Westport Lake. We sat in the new Visitor Centre and looked out over the lake whilst sipping a cup of tea. It was such a lovely sight, the lake looked beautiful. I definitely want to go again - hopefully when the weather is good enough for me to be pushed round the lake for a bit. What can I do tomorrow to make it another good day???

21/03/10

I returned home yesterday from my second lot of chemo and am pleased to report that it was MUCH BETTER than the first lot. I didn't have any sickness or heart palpitations and coped with the whole thing just like everyone else on the ward. I am now full of chemo and finding it hard to put a sentence together, but have this feeling that chemo is actually going to do me some good. I feel more able to move about and have less pain than I have had for ages.

I had a bit of a downer on the day I was due to come home when one of the other patients became quite poorly with a nasty chest. I was partly worried about her - and thinking how easy it is for things to go wrong, but a large, scary, selfish part of me was thinking- "Please God, don't let her give her bug to me!" It is not nice to realise that you are so selfish and wrapped up in your own problems. I am due to start treatment at the same time as her next time - and I will be worrying if she is not there.

Whilst in hospital we had the excitement of ordering our wigs. One other lady was ordering and another one was having hers delivered- but she wouldn't show it to me! In 2 weeks time I will be receiving my wigs and I am a little worried I have gone a bit mad and ordered something that won't suit me!!

Now to cope with the next few days when my body is in one place and my mind somewhere else completely. It's all good fun!!!

15/03/10

I didn't go into hospital on Friday, as planned, due to the fact that the ward was closed. There is Novovirus on the ward and all treatments were cancelled. It meant that I had a delightful reprieve and was able to enjoy Mother's Day at home, which pleased me no end.

I am now due to go in tomorrow (Tuesday) and am feeling pretty nervous. I keep telling myself how good the doctors and nurses are on the Ward, but I will be glad when this second treatment is over.

My hair continued falling out - even though there was only a stubble there - so we eventually resorted to a #0 cut. I don't like looking at my head any more as I think I look as if I am sick. I'm trying not to think about the fact that I am ill - and to concentrate on getting through and getting better. Seeing the ghost of Christmas Past looking at me in the mirror doesn't help!

Roll on tomorrow - hope it is better than last time.

08/03/10

Today my husband shaved my hair off! Yes, I know I was going to wait until Thursday, but it didn't quite work out like that. Last night the 'fine rain' turned into a proper storm. Having spent about my 4th night in a row fretting about my hair I decided that enough was enough.

At 4am I announced that my hair had had its last night. (Ummm..... my husband was awake anyway - I'm not THAT unreasonable.) In the morning I gave my locks their final wash - and watched the sink get blocked by all the loose hair. I then shed another few handfuls drying it on a towel - and then my husband fetched the razor.

I'm not sure which one of us was in the greater state of nerves. He was dreading me bursting into tears and trying to glue it all back on, I was just scared stiff. He started with a #3 and worked down to a #1. I think that is just about far enough for me now.

I was surprised that I don't look like a freak - though my husband says that he thinks I'm going to join the BNP and run off with another woman and my son says I look like Gollum from Lord of the Rings!!! I put on my fluffy purple hat and am really quite chuffed. No more tears, no more shovelling hair into the bin, no more agonising. Why didn't I do this a week ago???

I went out for the first time since my treatment - and met some people from work. Everyone took my new look in their stride and I wonder why I made such a fuss. Maybe I'm agonising over this treatment too much. How do I make myself 'go with the flow'?

07/03/10

Having a few 'hairy' moments over the last few days. I thought I was all ready to cope with the hair loss. I haven't had my hair cut or styled for months, so it really does not look good. Nevertheless, when my hair started falling out, I discovered that I am totally devastated by the prospect of losing it.

I could have coped better if it was falling out in handfulls. I was all prepared for that - out with the razor, job done. However mine is falling out in a sort of 'fine rain' and I'm finding this really upsetting. I don't want to shave my head when, to all appearances, I have a full set of hair, but I don't like this slow trickle.

I found myself bursting into tears - mostly in the middle of the night - and I just can't stop myself from tinkering with it. I thought today was going to be a 'mourn the loss of my hair' day, but I had a chat with my sister this morning. She suggested that I set a date for when I am going to shave my head. The most suitable date is next Thursday - just before I start my next chemo treatment.

This has made me feel much more comfortable - as if I am in control of my own head. I don't want to sit in hospital with hair falling in every direction - and I have a few more days to enjoy the sight of my own hair sitting on my own head. Thank you so much Sis!!!

27/02/10

I am home after my first chemo - and what a time I had!!! I started treatment at about 6pm on the Friday night. They injected Doxyrubicin into my veins and I was totally petrified. I managed to get some sleep and later on they started another drug call Ifsopra something or other!!! The second drug was supposed to take 23 hours to go through but I started being sick within a few hours. The sickness grew worse and worse until I couldn't keep down even the tiniest sip of water.

They gave me a special pump of antisickness drugs, but further problems started when my heart rate went into AF. With a heart rate veering between 110 and 145 beats per minute the doctors took the decision to take me off chemo. I must admit that I thought I would never go home again - but the other people in the room told me afterwards how wonderful the nurses and doctors were - monitoring me almost constantly and making sure that I was OK.

The next problem was that my temperature started to rise, I had blood in my urine and my blood came back as anaemic. I cannot remember ever being this ill before. I had a really bad neck - just to add to my problems - and I just drifted around in and out of consciousness, waiting to die!!!

The tender nursing started to have an effect however, and I managed to fight off threats to catheterise me and a blood transfusion! After 48 hours off treatment the chemo was resumed and I managed to complete my first chemo without any further major troubles.

Going home was very scary as I am so incredibly weak. I spent the first 2 days lying in bed but have managed to sit up today for a while. I am finally starting to feel as if my body and mind belong to the same person and are connected together somewhere! It is amazing how difficult it is to do the simplest things - like stringing a sentence together - and have spent the last few days in a state of total befuddlement.

I now have 2 weeks to pull myself together before I start the next cycle. I must admit to being very nervous about this, but trust the doctors and nurses to be able to look after me - they were marvellous! They are going to start the antisickness pump immediately next time, and I will also be a little more prepared as I have finally been given the information about my treatment that I should have had before I started!

If you are having your first go at chemo - be aware that you cannot get changed once you have started treatment, so wear something you are happy to remain in!!!! Herbal teas are recommended for drinking as most things start to taste awful.

One other thing that has cheered me up. Someone told me that severe reactions to chemo is often a sign that it is being more effective. So I'm hoping this is going to work in spades for me!!!

18/02/10

Well tomorrow is the day I finally get to start my treatment (bed availability permitting) I can't remember ever being quite this scared about any kind of treatment before. I feel as if I am going into hospital - never to come out again. The last few weeks have been all about trying to get things sorted. Finances, writing my will, throwing away things that I will never use again etc. I can't say that I have achieved everything, but I'm on the way.

I now have an incredibly stiff neck - possibly due to the fact that I am so tense?? I can barely move my head from side to side and up and down is also incredibly painful. I shall go into hospital looking like a robot! I have also increased all my medication as the pain seems to be getting much worse. It all seems to be doom and gloom!!!

Maybe I will happy in a few days - maybe the chemo will be a nice easy ride, maybe I will look really good in the little purple hat that I have knitted? My entire family have all phoned me today to wish me luck - and none of us really knew what to say. My husband has been shouting at me over the last few days. I've done a little bit of the same too - but we both know why we are shouting. Feeling so helpless and scared, who can we shout at but one another?

All I can say is - watch for the next update, maybe it will all turn out ok. Wish me luck!!

11/02/10

Had my appointment today. I managed to get more than just a grunt out of the consultant today. The good news is that the progress of the disease has been quite slow. The bad news is that, without treatment, I am likely to live for only a few months. They cannot cure this cancer - only slow the process down.

Consequently I am now about to start chemo - next week possibly. I am going to go bald (finally I will start to look like my husband!) and will have various other side effects like diarrhoea, sickness and possibly some confusion. Not sure if anyone will notice any difference with the last one!

Can't say for sure how I feel about all this. It just seems impossible that it is happening to me. Driving home from the hospital I looked at all the familiar roads and buildings and thought about how they will still be here in a few years - but I won't be there to see them. Strange that you can get upset at the thought of not seeing ASDA any more!

My son has decided that he wants a lock of my hair when it all falls out. It breaks my heart to think that he will have to treasure such a tiny part of me. How can I help him through this? How can I make some special memories for him to help him through his life without me?

It just makes no sense to me at all.

02/02/10

I had a call from the Dr's secretary today with an appointment for next Thursday, so I'm back to where I started this Blog - waiting to start chemo and wondering what it is all about. I only hope I find out a bit more at the NEXT appointment, as the last one was a waste of time.

I have had a CT (I really hate those machines - something about the thing that whizzes round and round in circles, makes me think it is going to chop me in half, like in a James Bone movie - I much prefer an MRI!) I also spent a delightful 24 hours pee-ing into a pot. Imagine, if you will, me squatting on the floor over half a lemonade bottle turned upside down to make a funnel into a huge plastic bottle. Not bad going for someone that can barely walk across the room!

I also had a blood test. I was amazed to discover that I have somehow gained priority over other patients - I was called in immediately and walked, rather uncomfortably, past a full waiting room of patients who all gave me daggers because I had jumped the queue!

Now that all the tests have been done - am I FINALLY going to be given some information about my treatment??? Just over a week to wait....

28/01/10

Well today was THE appointment day!!! I must admit I was slightly put off by the sight of 2 undertakers wheeling out a body bag just as we arrived. Then a group of people walked past me, all weeping copiously. The trembling and shaking increased very rapidly!

The consultant spent more time reading my file than actually talking to me. He seemed to have trouble forming a complete sentence. He would start off, wander about a bit and then disintigrate into silence without every really saying anything I could understand. I left the room with no information about what treatment I was going to have - and indeed felt in some doubt as to whether I was going to have treatment at all. It seems I have to have some tests done - but why didn't they do these BEFORE my appointment???

After leaving the room I managed to cover myself in embarrassment by bursting into tears. A very nice nurse then took me in hand and gave me a tour of the department. I spoke to another nurse who talked me through my likely treatment (4 days in hospital followed by a couple of weeks off, with a scan after the 3rd treatment). I also met a couple of patients who didn't look as if they were about to grow a second head - and they all had hair!!!

Feeling a bit better. Thank you to the nurses. Rude gesture to the consultant!!!

26/01/10

Spent the last 2 days sorting out our finances. Paid off the mortgage yesterday (thank you Legal and General!) and today we sorted one of the savings accounts. I feel as if there is this huge, black, scary monster hanging over me and I'm running round trying to sort out the rest of my life (what there is of it). If I don't sort it now I may never be able to get out to do it later.

Do people recover after chemo, or are they left like a burnt-out shell? Maybe I'm just being stupid but I feel as if I will never leave the house to do fun things again. Perhaps I should rush to the shops and start panic-buying!!!

24/01/10

I keep reading other people's Blogs about Chemo. They are full of names of things that I know nothing about, and next week I am going to start finding out about them all. It is a bit like going for a job interview and being given a tour of the office. You see all these strangers and wonder what it will be like to know them all and be part of that team. Will Mr Taxotere be kind? Is Miss Cisplatin a nice person to share your day with?

The only trouble is that this is an office full of really nasty people where you do a job you truly hate. Mr Venoralbine has a very nasty reputation and what will happen when I start taking calls about the FEC???

I'm trying to enjoy every day that I have left before the sickness hits me again! My brother came up this weekend and took my mind off things for a while, but I won't see him again now until after I have started treatment. What can I do tomorrow to keep myself sane??

22/01/10

In just under a week I will find out what sort of chemo I will be having. I am feeling pretty scared as I am expecting it to be really horrible. Every time I have an appointment they seem to tell me something worse than I imagined - and I am imagining something pretty awful right now.

I think I can cope with losing my hair - but won't know until it happens I guess. I have only just started to feel human again after the radiotherapy - and don't want to go back to being a zombie and chucking up every other minute. I have never felt that ill before - not even when I had radiotherapy last summer.

I just don't understand why the doctors say that they cannot cure me. The cancer hasn't spread to my lymph glands, it isn't in my liver. I secretly wonder if they have decided to save a bit of NHS money and not give me any operations or expensive drugs.

I'll try to update this as time goes on. Maybe there will even be some good news???

Thought I had gotten away with it - but the sarcoma got me again!

2009-11-19T13:41:24Z

I'm really not too sure what all this 'blogging' is about but I'm looking for some company!

I have just been diagnosed with a series of metastases in my spine and possibly in my lung. (I have been through surgery to stabilise my spine and can't remember what I was told, and what I dreamt!!) Hopefully I will find out more next week when I see the Oncologist.

I was so sure it was all cured and 5 weeks of radiotherapy was the worst I was going to get - I'm trying to be positive but those black thoughts keep creeping back in!

Does anyone out there need a friend? I certainly could do with one right now.

Persimmonar's blog

Feeling so confused - and I don't understand why????

My chemo journey - soft tissue sarcoma

Just found out my cancer is incurable

Thought I had gotten away with it - but the sarcoma got me again!