It's an odd place to be!

Yes, that strange place where you've had your first chemo treatment just before Christmas and feel like once again your life is entering another phase. This time it's the endurance test where you have to face the assault course of what 8 (at least I hope will only be 8!) chemotherapy sessions will do to your body and self-esteem whilst attacking all those crappy cancer cells. 

Already I've had a double whammy in that last week's blood tests showed a very low red cell count so not only did I spend most of the 23rd at the hospital for the chemo, I then spent the best part of the 24th there again having a blood transfusion! I'd not mentioned to anyone just how exhausted I've felt recently as I assumed that it was because of all the stress and hassle of the last few weeks, along with recovering from the mastectomy. So it just goes to show that even the tiniest thing might be significant and should be mentioned. I hope that the 2 units of blood will go some way to making me feel like I have at least a modicum of energy as the next few days progress.

The administration of the chemotherapy itself wasn't a big deal; it didn't hurt and wasn't in anyway uncomfortable but I did immediately start to develop a metallic taste in my mouth and that appears to be here to stay, along with a very changed set of taste buds. Physically I am hugely grateful for all the  anti-emetics prescribed me because without them I know I would be feeling a lot worse than I am right now. At the moment I am dealing with feeling tired, a low-grade nauseous feeling which is bearable if I keep the anti-emetics topped up and a strange feeling that oddly my body doesn't quite belong to me at the moment which is very hard to quantify.

I am extraordinarily lucky that I have the most wonderful, caring husband who is looking after me so well. Not only did he cook a fabulous Christmas day feast for us he didn't mind in the slightest that I couldn't eat a huge amount of it or help with the washing up either - what a star!

I confess that I have been very lazy today and I am typing this on my laptop whilst in bed but the rest has been worth every indulgent moment. :-)

It's great to know that I don't need to go anywhere near a medical establishment again until Wednesday either! Weekly dressing changes for the Hickman are a bit of a drag but at least the line will save my veins and I can get the changes done by a nurse at my GP surgery just 15 minutes from home. Much better than trekking across town to the hospital, especially in the current weather!

For now I am simply hoping that the current side effects won't get any worse and holding my breath for the day when I have to start dealing with the dreaded hair loss. 

One day at a time, is the only way to do things for the moment!
 

All Change!

Yes, it's definitely another day where I can truthfully say "everything changes from this day onwards." That's because this afternoon I will be having my first chemotherapy treatment and I am partly dreading it and partly happy that another part of my treatment plan has been started. It is daunting knowing that in just a few weeks I will be bald and feeling crap but I keep telling myself that it's another small step forward. I am trying hard to prepare myself mentally for all the side effects but I guess I don't how well I'll succeed at that until I get through the next few days.

I am still extremely sore from having the Hickman Line put in on Tuesday and not liking having two long tubes hanging out of my chest for 6-8 months. But hey, it's better than damaged veins! I saw my own GP for the first time since diagnosis yesterday and he was wonderfully compassionate, once again making me realise just how lucky I've been regarding the whole of my medical treatment - it could have been so much worse! He's arranged for me to have the weekly Hickman dressing changes/line flushing to do be done either at the surgery or by a district nurse, which is brilliant as it's so much less hassle than slogging over to the hospital every week - I spend enough time there as it is!

For now we are planning on putting Christmas on hold for a few days and holding our breaths to see how I get on regarding side effects. The bad weather has meant that we are much more stocked up food wise than normal, so if necessary we can just hibernate for a few days until I start to feel a bit better. 

I'm not looking forward to this afternoon but bring it on because it's one step closer to the end of treatment!

waiting is all I do these days

The last few days have been full of all sorts of ups and downs as I have slowly but surely discovered that cancer well and truly does take over your life one way or another. If I am not stressing over what lies ahead and the years of uncertainty it's the day to day stuff that brings it all home to you.

I now have my permanent prosthesis which is a lovely match to my other breast and although I am not quite healed enough to wear a proper bra yet, it is still brilliant to know that I can now have a natural looking bust again. It is surprising how things like this make such a difference, just a small step towards normalcy of some sort. I went for a wig fitting the same day and that really was an emotional experience; I cried when I tried on the one I bought because suddenly there was the pre-cancer me looking back in the mirror! I had not expected to be quite so tearful about it but sometimes a little cry is a good thing.

In other ways things have gone decidedly pear-shaped. Much as I hate the prospect of all the side effects, I really want to get started on chemo but due to staff shortages it will now be after the holiday break. At least it won't spoil christmas and truly I am grateful for that but it is back to the waiting game again and I just hate that as there has been so much of it over the last few months. In fact I feel like most of life is all about waiting either for test results or treatment of various sorts and I'm finding it harder and harder to deal with it as my reserves of stoicism and patience get used up.

Next week I am having a Hickman Line  fitted because I was at high risk of extravasation (tissue damage caused by the chemo drugs leaking into the tissue surrounding a cannula) and also vasculitis makes my veins harder to find and easier to damage. I am pleased that this decision has been made in advance of me starting treatment but it does mean weekly dressing changes resulting even more of my life being taken over by it all.

This last week I think I have been finding it harder and harder to escape the fact that I have cancer for even a moment and the realisation that it is very difficult not to have your life defined by being a cancer patient has been a tough thing to deal with. I will get through this but it often seems that just when I am getting a handle on things something else comes along to knock me back. The final straw was being told that I should strongly consider having a further mastectomy as a means of reducing the risk of the cancer returning as apparently I come into the high risk category. Admittedly I don't have to worry about this for at least a year but when I am having a hard time dealing with things as they are this was one piece of news I could have done without for the time being.

Now I guess I'd better try and find the enthusiasm to write some Christmas cards - not much hope of that right now, someone pass the chocolate please!

no, I don't feel like a 'new person'!

A comment from someone who I had told about having to have my long hair cut short - "ooh, I bet you feel like a brand new person now!" As if this was some marvelous positive thing, well thank you very much but it isn't! It would be fine if I had made the choice to have my hair cut because I fancied a change but of course that isn't the case at all and much as I would have loved to keep my lovely long locks, I really could not face the prospect of hair that length falling out when I've started chemo. I had my hair cut to make the process of going bald just a tiny bit easier to cope with, as to be honest it's a shitty thing to have happen and yes, I know it will grow back but that doesn't help in the short term.

I am going through a hard time at the moment when it comes to dealing with how I look with a breast missing. I am still badly bruised from the surgery, which doesn't help, even though the wound itself is healing well. I just hate how I look at the moment and I feel by turns depressed and angry that this has happened to me. The world around me is full of people looking forward to celebrating the holiday season and what have I got to look forward to? Oh yes, that would be my first cycle of chemo just before Christmas! I feel guilty for being so pissed off about it all, angry that I'm having to go through all of this in the first place and anxious about how my body will react to all the drugs.

To to top all that off I have a couple of 'friends' who have been very unsympathetic about my sadness at losing my hair. I've been told that I just have to try and deal with it. Well, for heaven's sake, I know that I have to find a way to do that but a bit of sympathy would not go amiss! One 'friend' in particular seemed incapable of understanding that I find the hair loss so upsetting, seeming to think that it pales into comparison with losing a breast. Yes, on a sliding scale it isn't as bad as after all my hair will grow back at some point but she seemed unable to see that for me, this is about being visually labeled a cancer patient. I can hide the fact that I've had a mastectomy quite easily but hair loss is another matter altogether.

Oh and why we are at it - why the hell is having cancer so damned expensive? New bras and other underwear, some new clothes, wigs, hats, scarves etc., it adds up to a  rather scary sum of money!

Falling

I didn’t have a very good night last night, partly because my wound hurts where it is healing but also just thinking about everything that is to come over the next few months. As a result I woke up this morning feeling like I am in free-fall without a parachute. Remember that stupid little voice in my head reminding me I have cancer? Well it’s back with a vengeance today and it doesn’t matter what sort of displacement activity I engage in, I just can’t find any peace from its incessant murmuring. So here I am writing in the hope that putting it all into words will help somewhat.

So what is it that has made things worse today? It’s hard to quantify exactly but it is a kind of creeping dread of what chemotherapy is going to do to me in the short term. I’ve done the research, read the experiences of others but cannot quite reconcile myself to what is going to happen. I often struggle with my health anyway so part of it is the thought that this is probably going to get worse because my body can only take so much abuse before it starts to rebel. Also the fact that I am going to lose my hair will be the final step in identifying to the world that I am being treated for cancer. I hate the fact that already some of those around me want to define me as a ‘cancer patient’ and demonstrate their pity for my situation. I know it sounds horribly ungrateful but I don’t want people to pity me, just to have a little compassion, sympathy and also patience as I do my best to negotiate through these difficult times. I am lucky in that I have lots of friends who are being wonderfully supportive but it only takes just one adverse comment from someone who knows me less well to send me into a downward spiral at the moment. I try to ignore it but somehow I can’t quite find the wherewithal to do so.

So here I am, falling inexorably towards the abyss, stony ground or perhaps the river that will sweep me away. I am hoping that when I finally get there it will be to fall into the river because at least then I might be able to swim my way out of it all.

Thursday I go for a CT scan to check to see if the cancer got further than my breast and lymph nodes and then after that I will begin chemotherapy. I’ve tried very hard to try and see some positive sides to it (more on this another time) but today I am searching hard for that stoical streak that has so often helped me in the past. All I can say right now is ‘tomorrow is another day’ and one that I hope brings back that elusive stoicism.

ETA - this is several days of updates as we've been without broadband for almost a week. 

Sunday 5th December

I had my CT scan on Thursday – wasn’t much fun getting to the hospital for 8am in the snow but it’s all done now, so now I guess I wait to find out when I will have my first chemo cycle. After things were finished at the hospital we went into town to try and sort out a proper mastectomy bra as in a couple of weeks I’ll be getting my permanent prosthesis. What a palaver that turned out to be – thank goodness for the caring staff in the lingerie department! I am in possession of just one bra with two on order that might, if I am lucky, also fit. It appears that pretty much all the major specialist bra manufacturers are discontinuing making them in smaller sizes, nice eh? I guess if I was feeling entrepreneurial there’s a business opportunity in there somewhere. . . ?

Meanwhile on Friday I sorted out the next thing on my list – a wig. I opted to go to a local specialist trained through Trevor Sorbie’s excellent My New Hair scheme and I am so glad that I did. I was treated with care, compassion and respect – if you live in the North Devon area this is the place to go if you need a wig for any reason at all but particularly if it’s for medical reasons – Your New Hair @ HQ The Salon

It turned out to be something of an emotional experience because once you have the wig cap on it is possible to get an idea of what it will look like when you’ve lost all your hair and I found this quite upsetting. I tried on several long styles and a few in colours similar to mine have been ordered for me to try on the 14^th. Whilst I was there I also tried on a few in shorter styles and if I am honest I didn’t really like the look of myself with so little hair – it seemed like someone else was looking back at me. I guess I’ll just have to get used to it though as next Tuesday I’m having it all chopped off!