Friday, 11 November 2011

It’s a long hard slog getting rid of Bob

So much to catch up on after not having my laptop for nine weeks (!) but firstly I think I should take you through each of my chemo sessions.
My first chemo I approached with a lot of trepidation and fear as did my cousin who took me – we/I didn’t know what to expect.  Other than taking three times to find a vein for the needle, and a lot of time with a heating pack, it all went quite well. 

The Mary Baron Suite in Colchester Essex General Hospital (and have since been told that it is a place of excellence for cancer patients) is a friendly and vibrant place - the nurses are brilliant and so approachable and there is laughter in the ward. The only problem about Essex Country is its parking – disgraceful!

I was given a comfortable lounge room chair and my cousin, I and the nurse nattered, gossiped, laughed together.  I could ask any questions, and watched TV with subtitles so I didn’t miss any of my Homes under the Hammer which I have got quite addicted to (as well as Bargain Hunt)!  I am on FEC-T so my first three sessions was FEC.  The nurse took me through each stage of chemo as it was going through me – the pins and needles felt in the face, the feeling of the chemo going through my arm, the uncomfortable feeling of sitting on small pins or a hedgehog lower down – not for long though (!) and then it was just waiting for all of it to go through.  I was taken through the likely reactions and given a huge bag of medical items – steroids, sickness pills, three large sickness pills to be taken on my next chemo, strong mouth wash – and took about 2hours in total.  I was extremely tired afterwards but think this was due to the inactivity of just sitting and the emotions felt – all in all I did not feel too bad - just hungry!  Over the next few days I felt surprised on how buoyant I actually was, although I was eating too much - but then the tiredness hit me at about day three and everything I did whether it was. just have a bath, something to eat seem to whack me out.  And I was dropping off to sleep all time.  I had such a lack of energy to do anything – housework lagged behind.  I coped feeling sick but not being sick – which was good but when the heartburn came I felt as if I was 8 months pregnant again!  Back to the Gaviscon!  My irritating cough I developed after my op wouldn’t go away and my mouth became sore in places (still have the cough).  However, by a week later I felt so much better, and my energy started to soar.  To say it was all easy would be a lie, but I surprised it wasn’t worse than it could be.   In fact everyone started to say how well they thought I looked.

I thought I go away with it, I thought my hair might not fall out as much as I thought it would, but by the weekend before my next chemo it started and I was bald by the end of that week! This for me was the most distressng bit of my chemo treatment, silly really but considering I have had my hair for all of my life and in a way it is a reflection of who are I suppose it isn't quite so odd. I could just stroke my hair and big clumps would come out of it (I was malting worse than the dog with my hair all over the place!) – my son became a little alarmed because now everything was more real to him, the reliance I put on him to help me more and mini rebellions with him that came with this.   On the outside my son was coping well but underneath he was withdrawing from me, and he felt that I was withdrawing from him too.   He would disappear into his room and not talk to me, he said he would do things but not do them, he wanted more freedom and I started shouting at him to help me more – which just caused a worse situation for us both.  On second thoughts though this might just mean he is starting his moody teenager process more because he is now 13years old!!

 Also just after a week after my first chemo I went back to work – this took some negotiation on hours, sickness, holidays and rate of pay.  I   put together a kind of schedule of what  I thought I could work planning to be at home a week at a time after each chemo session too place, taking this as a mixture of sickness and holidays (can’t carry forward my holiday to next year  so no point wasting them and getting less pay!).  As my workplace had already paid me full sickness pay for the three months recovering from my operations I was only entitled to SSAP for the days I was going to be off sick (about £20 per day as opposed to a full day's pay).  So there is a real incentive to work, but not to take time off sick – not sure if fully appropriate for someone in my situation but it was a way forward.  To be fair I am paid days worked as opposed to time worked (which it was going to be originally) – which means I work mornings for the first week after getting back from week off from chemo and then a bit more through a day if my energy levels are higher.  They also let me start a little later so I can take a bus after the children go to school so less likelihood of infection.  I am losing out in wages quite a bit, but I still I am much better working than not – and I love my job.  Going back to work has been a bit of a fire fighting exercise because I don’t have time to be able to do all the things I want in the job and I do get afraid that I am not living up to expectations – although they were not high when I first got back, they seem to be higher now and I am having problems keeping up – although I do have high standards on myself so maybe this is more a problem for me than my employers.  For the first few days after work I just went home and slept the whole afternoon – but it was well worth it just to take the focus off my cancer and becoming numb-dead by day time TV!

 My second chemo was easier still, apparently the shock of the first chemo can be worse because your body is getting used to poison going through you.  One problem through because they  couldn’t find my veins easily on the first go they wanted me to have a PIC line put into my arm.  This is  a tube that sits in the arm through the vein, I went in to have this two days before under general antithetic.  After four goes at trying to do it, they gave up and my poor arm was bruised all over.  I dreaded the time of my chemo because I thought oh no here we go again – but the needle went through my vein first time and I haven’t had any difficulties since then.  I did develop a pain up my arm where the veins are but by using Ibufon cream and a heat pack at home now and again kept this away.   The timeline was the same as the last chemo so again I felt quite lucky – although the state of my house was getting worse. I dropped hints for help but couldn’t ask outright – my pride does get in the way on asking for help directly.  My son took on cooking some dinner for me on occasions so that was good – I definitely haven’t lost my appetite and at this time nor my taste buds though rather than liking stronger things I liked smoother foods instead – Ready Break, Wots its and tuna and Smoothers for my throat (although I did start taking Bonjela as well to help)!

 On my second chemo visit I also spent a lot of time liaising with Macmillan talking about getting back to work, benefits help, housing problem and they were brilliant.  Macmillan suggested that I apply for a grant to be able to buy scarfs, bandanas, new clothes because I had gone up two dress sizes since my ops and being on steroids, they were brilliant so helpful and caring – and the time shot quickly by.  When I got back home over the week I spoke to my housing benefits people and all I have to do now is send them my salary details each month – they don’t stop my benefit to recalculate each month which is what I was really worried about but rather average out the payment.  I rang the Tax Credits people to ask them readjust my payments working out how much I thought I would lose up to end December (radiotherapy next so not sure how that will impact on my working life then!).  If there are any discrepancies then these would be caught up later when renewing credits next year.  I didn’t get an awful lot more but enough to make me feel a little more secure to be able to pay my rent and bills – although still living on an overdraft (albeit it is  smaller) so not all plain sailing!  Christmas may be a little difficult to get through this year!  And then a week and half later the grant came through £250.  It was a godsend – I brought warmer clothes that fitted two special hats from a special wig shop and lots of scarfs and, along with some other money given to me, a great winter coat.  It’s a relief I could never have afforded to get these things I really needed without the grant.  Living on a reduced budget is really difficult especially when you don’t spend that much anyway!  Getting my son’s new school uniform, shoes etc. was a little bit of a challenge though in September.

One of the strange things that is happening is that people seem to be avoiding me on the weeks I am actually home after chemo.  It could be more of just a feeling or imagination, or just the way things have workd out with other people having busy lives of their own.  People ring up now and again to check up on me, but people having not been popping round for a coffee.  It may be that they think I don’t want to be disturbed, or I will be sleeping, or they have a cold and don’t feel well so don’t want to give me an infection.  I know I can ask for help – anyone will do my shopping for me etc.  and could ask for people to come and see me – I don't want to impose on other people's time, but I do get a little lonely during the week of my chemo and when I don’t feel able to venture out.  Its better when I can venture out and then people also come to visit me!!  It’s just the week at home that I feel out of touch – but it hasn’t helped that I haven’t had by laptop either – another story!!

My third chemo was a bit different, not on the day of the session but the reactions afterwards.  By the end of the weekend after my chemo session I was absolutely exhausted – it had been half term and I had had kids in and out of the house and was getting ratty with the lack of rest I was getting.  By Monday/Tuesday/Wednesday I was sleeping for the almost of those days and found I couldn’t hardly anything around  the house at all – which made my son slightly miffed as he didn’t want to do anything either – he even got two of friends (girls) to come and clean my kitchen as it got into such a mess! There were a mirage of other problems I was dealing with as well and I was getting more emotional, tired and stressed each day.  I found I couldn’t go back to work when I wanted too and as this was short notice I am not sure they were happy about it either. A bit of my tooth fell out – but luckily didn’t cause an infection although I did get a few headaches.  But all in all I worked my way through this and some of the minor stresses became better and resolved –I will update you on the problems I was living with and my feelings then later on my next blog.  The tiredness I was having was accumulating and lasting longer – but really I had already been told that this is what is to be expected – it’s taken a lot longer to get my energy back and I have found I have been pushing myself to try to get things done when I should relax a bit more – but it is pretty depressing to sit in a house that is very untidy especially when you don’t want it to be!  To some extent I been pretty capable of dealing with things myself and putting on a happy face but I still manage to hide that sometimes I am not coping as well as others think I am.
My fourth chemo as you know was on the 9th of November and now I am on the T bit of my chemo sessions.  Again I was dreading this change of chemo and if I would have a reaction to it, on the however I only felt some pins and needles in my face and a funny breathless feeling in the throat, so not much reaction at all.  Apparently the bad reaction to this chemo is kidney pain – so again I feel lucky!  It  is now day 3 and I am not too bad although strangely my temperature has gone down a lot and I am feeling very cold and shivery – and today I know I definitely have a cold, my throat is sore and coated, I am constantly blowing my nose, and I am tired – so I am spending my time warming myself up with the heating on high (will have to pay for that later too), warm drinks – and instead of honey and lemons using Aldi’s Fiery No added Sugar Ginger Beer with honey and lemons and it has been brilliant for my throat – and lots of orange juice.  I am keeping an eye on my temperature -  have rang the chemo team and hoping my temperature doesn’t go high (can’t take paracetamal yet as would could lower my temperature even more – vitamin C supplements aren’t good either – wonder if Whisky Todds would work?  I would hate to have to spend time in hospital fighting an infection now!  I am injecting the solution in my tummy for my bone marrow as this chemo crashes your white blood cells quite badly and waiting to see if I have any muscular pain – so Ibufon on hand.  Don’t feel too bad yet but I know by the end of this weekend I may well have a problem – well keep your finger’s crossed I don’t! Only other problem I have is my eyes – watering and going blurry.  I think this is because partly of diabetes and the steroids but also because my eye-lashes are thinning out a bit.  I also have a dry bit of skin on my elbow that needs to have cream on it.  I am starting to get fed up now and just want all this to be over – but yeah (!) on the positive sidee I am over half way through now – two more chemo sessions to go  - and then on the to the next stage. 

It is long hard slog to go through but I have had such a learning curve on this journey – got to know my strengths and weaknesses so much better, my compassion and understanding of what others go through has increased, and my faith in people’s kindness and taking enjoyment out of the small things that can make you happy in life has meant to much more to me. I love the Autumn colours at the moment.  You can’t ask for more can you?

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