Thursday, 24 November 2011


So here I am, not been out for two weeks trying to get rid of this horrible running nose cold with a battered immune system going stir crazy watching day time TV, tweeting and playing Facebook games! Not being able to taste too much I have been living on all kinds of soups and crackers for the last ten days with an aptly named “dragon” mouth.  Have I felt sorry for myself?  Almost certainly at times but hey what is the point of wallowing or worrying too much and I always have this blog to get rid of my frustrations!
Having found out that soup is the mainstay of most people while going through TAX chemo sessions also rice pudding and a yearning for bacon I find myself that I am not that unusual including the effects if this chemo – It looks as if I have also been lucky as some people going through TAX have many more problems than I have had.  Having joined the Breast Cancer Care chat forums it looks as if I have a couple of more things to look forward too! Having sailed relatively well through FEC chemo sessions this one knocked me for six – and catching a viral cold two days after didn’t help as well!  I have had the muscle pains, insomnia, hard skin on feet which makes it difficult to walk comfortably, mouth thrush and sores in mouth, extreme fatigue and worse of all the loss of my taste buds!  For the first five days I couldn’t focus on anything very much, but did manage to read five books – thank God for books! There was the scare when my temperature went up too high, a visit to the hospital for checks and a borderline decision on whether I needed to go to hospital.  My next chemo is next week and not only am I worried that my blood counts won’t be good this time – I know what to expect afterwards and that is no fun at all!  The good thing is that time is now going so fast that this will be my fifth chemo with only one more to go and then I can concentrate more on recovery – although there is still radiotherapy to go through.
I tried to do a Facebook survey with my on-line friends on their favourite soups but only got two replies – but my next shopping trip I will be stocking up on all kinds of soups – food is now all about texture and adding some spice – but not too hot because it hurts my mouth – come on everybody let me know what your favourite soups are?  I am looking forward to a friend who has promised to make be Chinese chicken noodle soup – yum if I can taste it properly!  I have also had to force myself to make sure I am taking enough liquids cos even water, tea, coffee and juices all tasted like dishwater! The positive in this – the fact that my sense of smell is bad, no taste and even chocolate tastes (!) bad and thus having no appetite I have lost a bit of weight.  A bit of a drastic diet!

Soup apparently an answer to dieting problems and this has been proved in scientific studies as well – do not undervalue the importance of a good soup (but keep away from some of the creamy ones)!  Some facts: Eating soup at the start of a meal fills the stomach, which signals the brain to curtail appetite; Eating soup is a low-calorie way of satisfying a person's need for a certain VOLUME of food; Easting soup fools the body's natural sensors into thinking more calories have been consumed than actually have. Eating soup regularly helps you lose weight because it changes your eating patterns.
I even found a soup song on-line (sang to tune of Polly Wolly Doodle All the Day) and yes at the moment Chicken Noodle soup is my favourite – great texture and yummy when you can taste it!!!  So one, two, three ….
Oh I had some tea and soup called pea
 I was eating chicken noodle all day
I found a big bone and was eating minestrone
I was eating chicken noodle all day
I felt good, I felt good, I felt real good today
I had a big banana and I went to Soup Havana
 I was eating chicken noodle all day.

 I had tomato soup and baked potato soup
 I was eating chicken noodle all day
 I had a soup tornado and then a soup Alfredo
 I was eating chicken noodle all day
 I felt good, I felt good, I felt real good today
 I had a big banana and I went to soup Havana
 I was eating chicken noodle all day.

 I don't want a card but some soup with Swiss Chard
I want a Lamborgini and a soup with tortellini
I was eating chicken noodle all day
I felt good, I felt good, I felt real good today
I had a big banana and I went to soup Havana
I was eating chicken noodle all day!!
 I was eating chicken noodle all the day! Hey!

Me thinks I won't be stuffing myself this Christmas with my last chemo on the 21st of December but have promised my son and myself that just before I will book us in somewhere for a nice Christmas dinner!
Anyway for now my tastes buds have come back, having tasted egg and bacon (and heavenly marmalade on toast) again I am feeling so much better – it’s strange how good food can have such an effect on your moods
Happy eating everyone!

Friday, 18 November 2011


On reflection, the way I have seen my life over the few of months while going through chemo is a series of mini skirmishes to get through while fighting my cancer (which is the major battle) with some angles on my side, and demons in the mix.  Some have been angels in disguise briefly popping into my life, but quoting from a book I recently read I felt that I had “so many worries that it was like having no worries at all”. Of course not being well, problems and issues seemed much bigger than they really are and at the time I did feel stressed, but I tried to be as calm as possible and tackled each one issue, one at a time – even the unexpected ones.

PC World battle of wills
The first major disaster for me was the day after my first chemo, feeling dizzy I dropped my laptop and smashed the screen!  We had insurance with PC World so with some relief we rang them to arrange a repair. There were a few other minor problems reported; the sound jack was broken, the mouse wasn’t responding as fast it could and had problems connecting to others Wi-Fi  remotely -  this bit was particularly important to my 13 year old son because he was trying to set up his own web design business.  My entrepreneurial son had set up his own website, gone to lots of small businesses around the area  asking if they wanted help setting up websites for a nominal price, and offered free websites to charity groups.  He had sat down with discussed their needs, done some designs and was about to get his first commission.  For Daniel this was something that he could do that would firstly give him some much needed pocket money, something to become entrenched in to help cope with my cancer, and also a good learning curve to learn more about websites and design.  He had spoken to a local website design businesses who had given advice and practical assistance on hosting. Not having the laptop was a real issue for him – and he did lose business, has to now start again and lost confidence.    The first problem we had was that the screen was so bad we could not back up data from home on to our external hard disc so we had to go to PC World just out of town to do this and let them handle the repair from there.  The fun and games started (not)!

We had been assured that the repair would be done within 28 weeks.  Not having heard anything for about three weeks, on a different journey my son popped into the store to pick up his backed up data and was told that the laptop was being sent back to store unrepaired as some coffee residue had been found in the laptop and that they would be I touch, but would need some kind of a letter from me.  Again not hearing anything we followed up;  I was told I had to go back to the store with a letter explaining how the coffee residue had got into the machine and book it back in for repair.  By now I had just gone through my second chemo and a trip to the store would be a little bit of a challenge (I don’t drive).  My son explained this to a rather obnoxious lady who was very insistent that this is what I had to do.  My son rang them again and spoke to someone who was much more sympathetic.  We explained we were not quite sure how the coffee residue had got in the laptop as it was working OK before we reported it out but could think of several ways it could have got in.  He rang his head office, who apparently agreed that the laptop could be booked back in under its original call-out and a letter and visit to store was not necessary.  He seemed liked an angel at the time but really he was a demon in disguise as he never put this on my case notes!  However the laptop was sent back for repair with a promise it should be back in a week.  Huh!!
Lots of promised calls from them that didn’t come, lots of calls from my son and myself, the laptop going back to store again unrepaired twice more, some tears of frustration from me, and my aunt (my angel) managing to speak to a manager to say how could they treat me like this especially with cancer (and yes I had told them this countless times and how my laptop was my lifeline while recovering from chemo stuck at home),  I was eventually given an address to write to the Claims and Investigations department!  Not only did I write to them (handwritten of course) but I wrote to the CEO as well – no reply from him.  To be fair things did move quite quickly from there – they wrote off my old laptop and gave me vouchers for a new one (as per their insurance policy).  But even on the day I was given the go ahead to go to store and pick up the new laptop I was called in the morning by a PC World investigator asking for someone of a different name initially (!) as to why the wires in my laptop had been cut – I had to explain again how the damage arose and had to become insistent that no way had any wires had been cut in the laptop!  When my son rang this guy back up he apologised - the repair team had clipped the wrong notes to my claim!

 I am extremely upset with PC World – the countless calls, the countless explanations, the wrong information given to me, the lack of communication and compassion, missing notes - and yes I am going to write a formal complaint very soon.  9 weeks without a laptop – 9 weeks of being unable to blog!!  I guess you know who the Demon is here.

The 3 Mobile Conflict
Literally just before being diagnosed with cancer I had two salesmen come and visit me from 3.  I needed a new mobile, and signed up with them.  One of the things the salesmen did is test the signal inside my house and said that everything was fine – by heck was it!!  Because I had problems with getting a signal, I used my old mobile phone for a little while and then I was in and out of hospital.  Eventually I found that they only thing I could do from my home was text and then they wouldn’t send until I walked out of the door.  I couldn’t take or make a call, download or anything! 3 promised to look into the signal problem and would be resolved in about two weeks.  I received a call to say the signal had been boosted and all should be ok.  Still using my old mobile at home, and using the new mobile outside the house but still paying two contracts and now dealing with more to do with my cancer I struggled on.  Eventually I rang them again to say it was ridiculous that I had a phone that could not work in my house and as I was undergoing chemo and stuck at home a lot I needed a phone that worked!  I asked them to release me from the contract as I had a product that was not fit for purpose.  They first offered me a reduced tariff – what was the point I asked?  They then said I could come out of the contract for £250!!  I argued they came back with £150 and £80.  I refused and said that I had also being paying for services that they hadn’t delivered, so after once again been offered a reduced tariff(!) they released me out the contract.  I should have got money back for all the calls I made to them let alone what I had been paying them for the contract!  Oh well hindsight and really I should have dealt with it quicker.  It’s great now I have a phone which I use from home!!  Another Demon!

Now to my Angels:
 My extra special Aunt who sends me funny little notes both by text, email and in the post, phones me regularly and generally makes me laugh, sympathises and supports me in so many ways – so loving and caring. my Aunt’s friend who has just finished her radiotherapy, came to visit me and bought me some super bras.

 My two super colleagues from work who take me out to lunch when they can, who (through work) stocked up my food cupboard and more when I was struggling a couple of months ago – and whose on-going support is so much appreciated.  Also another colleague from work who took me out shopping, who covers for when I am not at work and again whose concern and support is much appreciated.

Three of my work colleagues from my old employment who have come up from London twice now – have taken me out, cooked me dinner and cheered me up so much, and also their on-going contact. 

A special friend near to where I live who pops in constantly, and always checks out if I am fine or needs help – in fact we help each other and its nice to be able to help someone else. There is also another colleague person, who is becoming a friend, pops in now and again to cheer me up. 

My brilliant cousin, who takes me for every medical appointment and more, paitently sits with me and keeps me going, also my other cousin who pops in, texts and prays for me. 
My local hairdresser who cut my wig or free.

The prayer group from my old Church in Battersea whose prayers are such a comfort and I am sure is doing me a lot of good and all those who do pray for me - working for a Bishop does have a certain advantage in this area!
Macmillan at Essex County Hospital who have given me a lot of support and advice.  All the nurses and doctors at the Mary Baron Suite at the hospital

My HR person at work, who I know would like to do more for me, but who listens to my problems, issues and is genuinely concerned – it makes such a difference. 
My dad and his partner and sister whose on-going love and support I could just not do without even if they are not near to me.

 All my Facebook friends who keep in contact! 
My dog whose very character brings a smile and whose love is a comfort – although I can’t walk him as much as would like to.

 I am hoping I haven’t missed anyone!!!

The Angel in disguise
The Angel in disguise was a ferret!  During my first chemo while resting upstairs I heard such a howl from my dog, I rushed down to see his him peering under a cupboard and then out popped the head of a very scared and inquisitive ferret!  I was so surprised and you should have seen my face.  At a loss of what to do I tried to entice him out with milk – but it wouldn’t work so I just had to wait until my enterprising son came home from school and try and keep the dog away although to be fair they were both frightened of each other!  My son was in seventh heaven – he had always wanted a ferret and this was like an answer to his prayers! 

We rang the RSPCA, put posters up and my son begged me to look after the ferret while it was the on the lost list.  Before I could even think about it he rushed out and brought a hutch from a man he knew with his own pocket money!  My son researched online, rang ferret organisations to get advice on how to look after ferrets etc.  He contacted a man in our area who was considered a bit of an expert.  We called him the ferret man (or should I say an Angel as well).  The ferret man checked the ferret out giving it a good bill of health and a promise to call in a favour from a local vet to also get him checked over and check to see if there was any identification – bought us food and good advice.   So at the same time we dropped off the laptop for repair, we also brought some ferret bits and bobs (a tiring day for me that was and took a couple of days to get over!).  My son would take the ferret out for walks (not the same time as the dog), feed the ferret, clean the hutch out and most importantly play and love the ferret.  He obtained bits of pipe for it to run in and out of.  He would race home after school with excitement.  The loss of the laptop wasn’t such a big a deal as it could of have been and now again he had another thing to focus on especially now I was losing my hair as my cancer treatment was becoming more real and visible to him.  We had one call to claim the ferret but they never came round to collect.  My son was desperate to keep the ferret but unfortunately others around me were not so keen and would not come into the house while it was here.  I was told all sorts things about the ferret – it was a dirty creature, flea-ridden and dangerous, carrying disease – just like a rat – could give me a serious infection.  Although the ferret could nip (I did not handle the ferret at all), he was in fact quite cute.  The vet had given him the all clear; we gave him a flea jab and waited for him to be claimed.  Then a friend’s child got ringworm – she had stroked the ferret once and doctor blamed the ferret! All sorts of conversations were happening around me but not directly to me, and then I was given an ultimation - the ferret or the dog. 
My son was angry and heart-broken and all in all I had to deal sensitively with this.  With some persuasion, my son understood that bad feelings were brewing up on many sides, and I was not in a position to negotiate and he had to let go of the ferret.  We contacted our ferret friend who drove my son to a ferret rescue sanctuary where he ensured it was going to be safe and cared for.  I call the ferret an angel in disguise because while it was here it brought love, laughter and a focus for my son during the first weeks of my first chemo – something my son much needed at that time.

A Home of my Own
Universe, Universe please give me a gift, a lovely new home for my son, dog and self – safe and secure, happy and light, blessed future of good health and delight!  I had been told if you have a mantra, it can become true. I think perhaps I am asking for too much.

 It was during the time of the ferret that my housing situation became so much more of an issue.  The landlord (having his own financial problems) really does need more rent coming in than I can pay – particularly now when I am also earning less – and there is another bedroom available to rent out.  Truthfully I am struggling to pay the rent and all the bills, the house is too big for just me and Daniel especially to keep clean and tidy, and the ferret issue made me also realise it would be better if I could live somewhere I could have more control and security.  So the landlord issued me with an eviction letter and I went down to the council – but nothing is ever straightforward.  Without going into any details I couldn’t put myself at a high enough band (despite the health issues) to be able to get a council house, or be part of a housing association. On the band I am on it will probably take me a long time to be considered for anywhere.  So the next solution is that I  will probably need to rent somewhere else - but frankly I am too ill and lacking energy at the moment to even focus on it –just working through each day is enough. Macmillan have done some liaison with the council on this on my behalf, but to no avail and there is no easy solution.  At the moment it is planned another tenant will come in soon and that some decoration needs to be done in the house.  It’s not an ideal situation for either me, my son or the landlord (and I must point out he is a very fair landlord), but the person moving in does have to know the deal here with me, the potential difficulties (especially with a teenaged boy),the fact that I do not have the energy to do the necessary housework – some days I can’t even move - but at least I may have some help with the bills.  This is a watch this spot scenario.  

Other Demons
Demon:  The bus driver who drove straight pass the bus stop on a damp dark evening last week!

Demons:  All those calls I am currently getting asking if I want medical insurance!

Demon:  me!  I do recognise that I sometimes am not good to me – still smoking when I should give up – not being as patient with my son as I should be, withdrawing from people when I shouldn’t and not dealing with problems head on. 

 Looking back now it doesn’t really seem all too bad – but a lot of energy and stress has been expanded – and not to forget going back to work and all this happened while going through three chemo sessions.  There have been other day to day problems as well – the emotional high and lows.  I yearn for a little time of peace and relaxation rather than lurching from one thing to another. 

There have also been some really horrible things happening to my loved ones around me too and I do feel and emphasise for them and wish I could really be much more of a support – but I also recognise that my main focus has to be on myself and for a time I have to be selfish.

Well I have now caught up on my 9 weeks of absent blogging, and yes I failed to mention I burnt the milk pan while blogging this!!

Wednesday, 16 November 2011

Boo Hoo with Bob

Well it was bound to happen, I was more apprehensive about my fourth chemo – now on the T sessions – and how I would react, and this has been by far the worse week.  Problem is that I have picked up a viral infection (second day after chemo) and it has made me really miserable – harder to be positive and to keep on smiling!  I have lost my voice; have the runniest nose ever; a very sore throat on top of mouth sores, thrush and a complete loss of taste buds (everything tastes like cardboard and salt!); I have an itchy bum (sorry!); pains in my legs (although these are easing now); some hard skin on my feet which is becoming difficult to get rid of and a little painful to walk on; and topping it all no energy.  All in all I feel like a walking disaster!  Yesterday I was at the hospital being checked out as my temperature rose above the 37.5. They thoroughly checked me out which was reassuring again with a mix of empathy and humour.  This is where a learned about neutrophils and how important the levels are, and if they are 1 or below that is when you will need to go into hospital and be put on a drip for a couple of days – it is not a rare thing to happen.  Mine were borderline 1.4, and I had only just stopped using my bone marrow injections so were worried about false readings – a decision was taken and I was sent home with antibiotics to help anything worse happening, and something for the lining of my stomach to help the mouth thrush and sores. I feel I am a walking medicine cabinet! I have strict instructions to keep an eye on my temperature especially over days 10 -14 as I could go down again as my white cell blood count goes down.

To be fair up to now I haven’t had too much trouble with chemo and I know others who have.  It seems to have crept up on me with a vengeance. Typically though I am getting lots of calls and a few visits this week and I can’t talk!!  I do like the company though and it does lift my spirits, I just hope no-one catches anything from me!

The loss of taste buds started gradually – I failed to mention in my last blog that things had started to taste increasingly more salty.  Strangely just after my third chemo session I had a baked potato and managed to drop sea salt on it – instead of throwing it away – I cleared as much as the salt away as I could and ate the potato – ever since then everything I have eaten or drank has a taste of salt – some days stronger than others.  However, with this viral infection and throat problem my taste buds disappeared entirely and everything I eat now taste likes cardboard and salt!  I can’t touch bread at all.  I can’t taste marmite at all!  It’s all now a bit of a game trying to decide what to eat - having no sense of smell, and taste and hence not much appetite either.  Never underestimate your taste buds - even water tastes like dishwater! I have tried things that have stronger tastes but because of the mouth sores this makes eating a bit a painful so a lot of my eating now is about texture.  Chicken Noodle soup is lovely! Yoghurts are good, and Ready Break for breakfast (although now a little boring now); Crackers rather than bread, and ham – ice-cream is ok but a little of a disappointment – chocolate is a no no, a complete disappointment!   I think I need to ask the good cooks around me to make me a nice smooth curry!   Positive thing to come out of this, well I may well lose some of that weight I have put on ……

So what have I been doing to keep myself cheerful – I can only just now focus on the TV, and going on the laptop – and other than sleeping lots, keeping myself warm, forcing myself to eat, I have got myself some uplifting books by Gervase Phinn and his experiences as a school inspector in the Yorkshire Dales – books that can be just dipped into and make me chuckle– I have read his entire series in just four days!  And oh yes, my son did all the washing and drying up without a moan!

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?

Wednesday, 9 November 2011

Memorial and apologies

Today I had my fourth chemo, yes my fourth and I have been unable to blog until now and I so much wanted to share my thoughts, my feelings as I went through the last 9 weeks and my  experiences both good bad.  PC  World has a lot to answer for!  I am now over whelmed on how much I have to share.  I have had personal battles to overcome with myself and others, and such good things have happened along with several stresses.  I apologise for anyone who has been following my blog and thought I had abandoned it!!

Today is a special day – I am remembering my mother who died of ovarian cancer on this date – a date that I had my chemo and it makes it extra poignant that in some way I am suffering through some of things that she did, and brings back the fact I am fighting for my survival and the scary thought of what happens if all my cancer as not been caught and very real threat of secondary cancer – not immediately but maybe years down the line.  These are the negative thoughts that I try to keep away but sometimes they just can’t be hidden.  This is where by ability to hide my head in the sand and hope solutions to problems just come is helpful! 
I miss my mum so much, her love, wisdom and comfort.  I have lit a candle, have a photograph nearby and card of hope sent by my sister.  My son and I have lit sparklers as my sister and I did on that night fusing them together as they did then.  Around midnight I will blow the candle out, the time she died and post this blog as my memorial to her.   Shortly after my mother died I had a vision of her as full of health and vitality – as a goddess raising from the ashes, and received a message promising that she would always be with me, and a part of me as I was a part of her.  It is something that has spiritually helped me get over her death and suffering through these last eight years.  God bless you mum.

Over the next few days I will update the happenings over the last 9 weeks – my feelings then are very different to the ones I have now.  I can retrospectively look back and reflect and see the angels is disguises, the trials and tribulations that have made me stronger and the special things that have me happy.  Life goes on whatever situations we find ourselves in and in each experience there are so many positives to be found.  I found a passage in my mum’s bible which most reflects what I have felt:  “… do not be anxious about tomorrow, for tomorrow will be anxious for itself.  Let the day’s own trouble be sufficient for the day”.