Let me be scared

Thoughts from the chemo mist.

2010-12-21T00:15:05Z

This is not going to be happy or uplifting, informative of even useful but a self-centered piece of rambling - but sorrry I need to write this down.

I know how lucky I have been so far and that what I have been through is for my own good but it has ground me down. I apoligise to all of you who are in far worse situations than me I don't mean to belittle the enormity of what you have faced I can't imagine how some of you have coped. But right now I feel at rock bottom - sorry.

This time last year I was near the beginning of my treatment and was undergoing chemo/radiation prior to my first big op. I was scared but optimistic I felt confident that I would be cured (and probably still do), but my experience of being in the system - the curative conveyor belt has left me a non- person.

What I feel is in contradiction to what has happened. Diagnosed stage 4 but given a really good prognosis, two major surgeries to remove primary and secondary cancer and now on adjuvant chemo I feel like the luckiest person in the world. But with the way I have been treated by the people involved in my care has made me feel like a piece of meat.

I have never had a consultation with my Colorectal surgeon only snatched conversations at my bedside. He is a lovely man and extremely skilled and I am forever grateful - but I don't know what he found in detail - my follow up appointment after surgery was done by the Hepatobiliary Consultant who said everything was fine and then proceede to prepare for his part of the process. Once again this guy is a wonderful surgeon and did a fantastic job but he is so busy that I was never given the time to understand the situation in full and always felt although I was overrunning the apponitment time when I asked questions. My Oncolgist is very thorough but not a people person and he treats me differently when my husband is with me - laughing joking and very polite. If I am on my own I feel like something he just scraped off his shoe. The nurses on the chemo suite are dedicated and wonderful - but they are so stretched. It is not uncommon for me to have to wait 2 hours plus for treatment to begin and it often ends up with people being given chemo in the waiting room, side rooms and doctors offices(which is where I ended up last time).

I should be grateful that I am getting treated and I suppose at the end of the day that is all that matters. Having missed my last two treatments because of low platelets it is a relief not to have to go but I want to get it over with.

The problem is people have got used to the fact that I am having cancer treatment - but I haven't. Quite honestly I am feeling quite unwell at the moment - nothing serious just tired, aching, nauseus etc.

Money is tight, I am cut off from normal life, and I feel extremely lonely.

I am sure this won't last long - I want to be able to give something back but right now I feel completely defeated.

Well I did warn people how self-pitying this would sound but that is how I am at the moment - am I a freak?

Phase 4 of my treatment - the and into the 2nd year.

2010-10-05T05:27:05Z

Well I sdtarted my first of 12 planned cycles of folfox yesterday and all went well apart from the fact that I have lost my mobile - probably at the chemo suite they are looking for it.My husband came to collect me as we live a long way from the hospital and he had to queue 30 mins for the car park and still couldn't get in so he phoned me.The parking for the hospital is really bad and makes the visit really drag out but the staff on the chemo suite are lovely so it balances out I suppose.

Had a few strange side effects but nothing I couldn't handle so I feel relaxed about it now. The worst thimg is trying to sleep.I have to sleep with my arm on a pillow as I have the pump strapped to my left arm for the next 48 hours and then still have to be careful of my right side where the temp ileostomy is. This is compounded by the fact that I feel very twitchy and unable to keep my legs rested - probably caused by the steroids that I am taking. So I have not had much sleep and have now been up a couple of hours.Probably moaning a bit I know but as all this has been going on for over a year it does feel as though I just get used to one set of problems, recover from them and face more hurdles to overcome. I feel deep down that this is a small price to pay in the long run and am so lucky that I was diagnosed stage 4 but am able to be treated with curative intent and am going for it!

I am starting to worry now about our financial security as the sick pay has run out and with my husband retired for a year I am the principal wage earner. I feel so guilty for not being able to provide for us and also fulfill my role at work - but what can I do. I might beat this disease eventually but financially we will be in a dark place - it doesn't bear thinking about. We will see our Macmillan Benefits advisor who is very nice but I suspect he is fairly new and I don't feel that he is taking charge of our situation and doesn't give me confidence That is in no way a critisiscm of Macmillan as they do a marvellous job and I am so grateful for all that they do - I want give something back when I am in a position to do so.

Didn't mean for this to be such a gloomy post - I think it's because I feel tired - sorry all.

Looking forward to tomorrow (later today I mean),things always seem better in daylight - hope we see a bit of sun.

Love ta all

Cathie xx

10 months from diagnosis and secondary tumour now removed.

2010-08-03T11:13:40Z

Well finally I have had surgery to remove the tumour in my liver and I am now at home recovering. It was all so much easier than my big op in March as I was lucky enough to have laparoscopic surgery and even though the op lasted just under 5 hours I feel I am improving day by day instead of week by week!

What I am finding hard is getting my mind set to wait again - 6 weeks for follow up with consultant and then I don't know how long till chemo starts. Even after 10 months of this drawn out treatment I still find waiting the hardest thing, especially now as I have to rest and can't find enough to occupy myself with. Don't get me wrong, the relief I feel at having finally got rid of the last bit of visible cancer is immense and I truly have hope that although diagnosed with stage 4 that I can achieve that elusive N.E.D.!

So yes I have jumped another hurdle - bring on the next.

With love to all of you who are going through or caring for someone with this horrible life changing disease.

Cathie x

All set to go.........

2010-07-07T18:26:37Z

Well I was all set to go this morning. Got up at 5.30am and arrived at the hospital for my second operation - liver rfesection. Changed into my gown, dvt socks etc. Usual preparations made - usual visits from different medical professionals and then to wait ... and wait... and wait (6.5 hours to be precise). Operation cancelled as there had been an emergency.

Now I have no problem with prioritising need and I would never say that what happened wasn't right - it was. BUT I feel gutted as I'd psyched myself up for something that I wanted but didn't want if you know what I mean.

Back to the drawing board and playing the waiting game again.

I know it happens and I should accept it but the weeks are speeding by and I need to get on with my treatment if I am to beat this horrible disease.

There, I've said it - what a whinger!!

Let me be scared

2010-07-02T21:27:41Z

You have not heard from me to date but I have been coming in to Mac land since the end of last year. Thus far I have coped with my diagnosis last October (Bowel Cancer) chemo radiation (november 09 to Jan 10),anterior resection,hysterectomy and illeostomy (March of this year) and weeks of waiting and tests to be told that I can have a laporoscopic liver resection next week.

I should feel lucky that all has gone well and my recovery has been really good and I do but BUT - I now feel that because of how things have been going so far I should feel that this next part of my treatment is relatively straight forward and I will get through it easily. I think that those near to me feel used to the fact that I have Cancer and because I look so well and have been positive and upbeat I think they forget how serious this thing that I am dealing with is. It is not that I want attention but I do feel alone and mostly scared.

It is hard to put into words what I feel as I still feel in many ways that I am witnessing someone else's struggle and not my own.My family have been very supportive and my husband is very loving but my parents are elderly (86) and I suppose it is hard for my three sons who I try to protect and worry about constantly - the point is I must stay strong for everyone - but I need to crumble somewhere.

I'm not making myself very clear in fact I'm not entirely sure what I am trying to say except I feel very lonely and vulnerable right now. can anyone out htere relate to this?