Tuesday, 31 March 2009

Tues. 31st Mar. 2009 'Mrs Velcro Head'

Noticed something this morning, my scalp has that Velcro feel to it, which doesn't usually happen until the third week after my chemotherapy, Graham noticed it too. I wonder if that's because I'm not taking the steroids? Anyway it was a mildly exciting discovery, marred only by the early morning nausea.

It's been warmer today so I sat in the conservatory and sorted through all our old bills and papers. It's a job I've been going to do for the last year or more and I realised as I was doing it that it's also important to keep things organised so that we can both find relevant documents should the need arise.

I also sent the attached photograph taken on my day in Leeds, to Skye Batiks, my favorite shop of all time which I'll be visiting when we go up to the Isle of Skye in June. I'm wearing one of their batik scarfs which I bought many years ago never realising how useful it would be! They sent me a lovely e-mail back saying that they'll have tea and coffee waiting in the shop - how great!.

Monday, 30 March 2009

Mon. 30th Mar. 2009 'Slow Progress'

Yesterday was a dead loss and I can't say I've had much more energy today. However, I do think that some of the other side effects are less apparent and I'm attributing this to not taking the steroid tablets. Certainly I haven't got the weird dryness to my nails and teeth, or the fluid retention and my peripheral circulation seems less affected, so my feet are not as cold and numb. Most of all, I think my stomach is much better. I have got some discomfort in my throat when I swallow, but so far (fingers crossed), no heartburn.

I requested a brief ride out, just to stop me going crazy and we stopped at Frankie & Bennie's for some spicy lunch. Even the waiter commented on how brave we were to be eating spicy chicken wings at 11.30 in the morning (if he only knew). Returned home and slept again, but I'm sure the trip out did me good and Graham commented on the fact that I laughed tonight for the first time in a week!

Sun. 29th Mar. 2009 'A Nothing Day'

I'm sure I could write a novel if I had the energy, but I don't. It's been a really pleasant day weather wise and from the moment I opened my eyes, my brain was thinking of all the things I could be doing. The reality was however that physically my body would not respond.

Graham was working from mid morning until tea time and other than a call from my friend joan all was very quiet, so I spent the day doing silly little jobs and sleeping. Days like this greatly irritate me and it doesn't help that this is my last chemotherapy, it's still a 'pile of pants'. Graham asks me how I'm feeling, but that's hard to answer. If I was throwing up It would be easy, but there are no words to describe this particular period, other than 'Nothingness', so that's what I'm calling today a 'Nothing Day'.

Saturday, 28 March 2009

Sat. 28th Mar. 2009 'Day two post chemo'

Have resigned myself to doing very little for the next week. Yesterday I watched a several DVDs and listened to my audio book 'Pride & Prejudice'. I slept reasonably well again last night and only woke a couple of times with some nausea and thirst.

This morning I have shaved the little bit of hair re-growth that tends to appear around the third week of each cycle, because as soon as I've had another treatment it goes very soft and tends to rub off in patches. Actually most of it came off in the shower this morning, so I decided to give it one last tidy up so that it can now grow back nicely!

My baldness has been a source of some humour right from the start and has helped me cope with what could otherwise have been quite traumatic. I remember being asked at Christmas if I wanted some double sided tape to keep my hats on. When I went to the hospital on Thursday we went for a quick sandwich. As I don't like too much bread at the moment I took the crust off mine at which Graham reminded me 'Your hair won't curl if you don't eat your crusts'. Later that evening when Pat and Mike came for tea, we had Christmas Crackers to pull and guess what was in mine - a hair bobble!

I will be really pleased to have my eyelashes and eyebrows back too, partly so I can wear make up again and partly to keep the dust and grit out of my eyes which makes them dry and sore.

P.M - The usual side effects are beginning to kick in now. I've got no energy or the inclination to do anything and my taste buds have been well and truly zapped, so it's back to still, fizzy or hot water. I had some sweet chilli and red pepper crisps for lunch, but the after taste has been dreadful, don't know what else to try so I won't bother.

Thursday, 26 March 2009

Fri. 27th Mar. 2009 'All together now - Awwww!'

Slept better than I had anticipated but did wake at fairly regular intervals feeling very disorientated and thirsty.

The thirst is caused by the Granisteron tablets (anti-sickness), they literally soak up the body fluids like a sponge, so I have to drink constantly to avoid the knock on effect of constipation.

So I'm up and dressed and waiting to see how the day goes without the steroids. I've just spoken to my GP, she's absolutely wonderful and has contacted me a couple of times to see how I am and if I need anything (such a rare quality these days). I've asked her to sign me back to work on Tuesday 14th April so that I can at least catch up for a couple of weeks before I go off again for my surgery.

I've just received a wonderful 'Mother's Day' gift from my daughter. It's a booklet of photographs from our trip to Paris last year, (a trip that I will always remember) prefaced by a poem by Walt Whitman 1819 - 1892 which I'm having read at my funeral (in the distant future of course). My heart is certainly bursting with love and thanks this morning.
(Blog picture shows recent flowers, BobbyBear and Lellyphant.)

I intend to take things really easy now and just count the days to feeling better!

Thur. 26th Mar. 2009 'Chemo No6 - The Last Time'

Yes, it's here and I just want to get on with it now. I feel ok, probably a bit cross that I have to go through ten to fourteen days of crap again, but at least I'll know it is the last time. I always get dressed up when I go in, but I've made a special effort today in celebration. Also I've cooked Coq au Vin and prepared a Bread Pudding for later which we'll share with Pat and Mike. I have assured them it's cooked this time - ha!

We have to be there for 1.30p.m. today as I'm seeing my Oncologist, so I'll update on how things have gone later (ooh, butterflies now).

Post Chemotherapy: All went very smoothly, but I was told I'd only just scraped through in terms of my white cell count, so I will be taking extra care for the next week or so. I saw my Oncologist who congratulated me on making it through (how sweet). He has suggested I might want to try without the steroid tablets this time, in view of the gastric problems I've had - that's worth a try, it might mean I feel a bit sicker, but I have back-up tablets.

The Herceptin will start after my surgery and I now have more information about it's possible effects. First session will take six hours in hospital as I have to be closely monitored for allergic reactions and side effects. The second is also in hospital but takes two to three hours. After that specialist nurses will come to my house every three weeks to carry out the infusion (for a year).

Shirley did my chemo, she's a wonderful nurse, really passionate about her unit, but really fed up with the amount of paperwork, audits and lack of funding for extra staff. They were really short staffed today, but still managed to be cheerful, chatty and very professional. We took them some chocolates and both Graham's Cd's and I got lots of hugs and good wishes. No doubt I will see them in the future, but hopefully not for chemotherapy!

To finish off the day I invited Patty and Mike for tea - Coq au Vin, which was really nice and made up for my previous disaster, followed by bread pudding and Christmas crackers!. We had a really nice evening and just as they were leaving around 8p.m. I was beginning to feel nauseous and I now have the usual headache. I won't sleep tonight as the IV steroids mess with my head, so I may be listening to Pride & Prejudice on the i Pod.

Thanks to everyone who sent texts and e-mails with messages of support and prayers for today.

Wednesday, 25 March 2009

Wed. 25th Mar. 2009

Well, so much for sleeping like a log last night. I think it's the worst night I've had for ages, I slept for a couple of hours and woke around 2a.m. There was so much going on in my head that I really thought I was going mad. I tried everything, including counting sheep, trouble is the sheep wouldn't jump the fence they kept bouncing off and spinning away. At one point I found myself sitting in the bathroom with tears dripping on my nightgown and feeling extremely sorry for myself.

Consequently I'm very tired this morning and I've just been to Selby Hospital for what I hope will be my last chemo bloods. This procedure has been getting gradually more painful due to the gnarled state of my veins, but this morning I nearly shot out of the chair and the pain in my arm and shoulder is excruciating even now. So combined with my lack of sleep and griping stomach ache, not a good start to the day, lets hope it improves.

Just about to go to bed and can't say it's been a thrilling day, I've slept and generally done very little. No call from the hospital, so it looks like treatment is on for tomorrow - yippee!

Tuesday, 24 March 2009

Tues. 24th Mar. 2009 'Me, Roo and Leeds'

Today has been rather special. Roo and I have been planning to go to Leeds for the last few months and today it finally happened. I woke several times kind of excited and kind of anxious, so I was glad to get up and ready. I knew I would be facing some of my demons i.e. driving alone, going on the train and coping generally with a full day, but I felt sure I could cope, plus I felt as though I needed to push the boundaries a bit before my Chemo on Thursday.

Well, just my chuffin luck, only a few miles from home on the main road to York and everything was at a standstill. It normally takes fifteen to twenty mins to York, so an hour and thirty mins later I was well and truly fed up and anxious. Fortunately I was able to contact Roo before she left Ilkley to let her know I would be on a later train.

Arrived in Leeds about 10a.m. and our first port of call was Harvey Nic's where Roo treated me to coffee and a croissant, very posh! We then tootled around the clothes shops trying on various items and giggling like two school girls.

Lunch was really nice in a place called 'Brown's' and I enjoyed every mouthful. We also had a very naughty cocktail and left feeling warm inside and replete! A couple more shops and then I knew I'd had enough so we set off back for the station.

I didn't enjoy the trip home, I felt tearful when I'd waved Roo off at the station and found the journey back difficult and frustrating. However, it was worth it and I will definitely sleep well tonight. Thanks Roo!

Monday, 23 March 2009

Mon. 23rd Mar. 2009 'A Winnie The Pooh Day'

A total change in the weather, a 'blustery' day with some heavy downpours and sunshine. I don't have much to report today apart from a rather large ulcer on my tongue. I'm going to make some kedgeree for tea, so Graham is checking the fire alarms ha!

Sunday, 22 March 2009

Sun. 22nd Mar. 2009 'Mother's Day'

I've felt pretty good today, Roo has been over and I cooked lunch without burning the place down. Joseph rang me on his way to work, poor lad seems to do such long hours. Louis is visiting later in the week. Roo bought me 'Pride & Prejudice' on audio, so I'll be able to listen to that when I'm feeling crap (reading can be very tiring).

Graham has been out most of the day, visiting his Mum (pictured left)who will be 91 in April. He then went on to sing & play for a special 'Mother's Day' opening at the 'Ate O'clock'.

It's been a really nice day and I'm grateful to be here and feeling well. I heard that Jade Goody passed away last night and that did make me feel sad, especially for her children, but at least her suffering is over.

Saturday, 21 March 2009

Sat. 21st Mar. 2009 'Happy Naw Ruz'

This is the Bahai New Year (Naw Ruz) and Bahais all over the world will be celebrating tonight, so I wish them well and thank them for their thoughts and prayers.

I can honestly say that I've had a super day today, even my chest seemed better. The weather has been wonderful and we made our usual Saturday trip to York for coffee with good friend Alan. Alan's wife Chris, who was a beautiful lady and a dear friend, lost her fight with cancer in April 2005 and I think about her often and how she must have been feeling at times. I wish I'd had the knowledge I have now and I sincerely hope I offered empathy and not sympathy (something we talked about today).

We bumped into Graham's Brother and Sister in Law, so we all went for lunch and I really enjoyed it. I get butterflies when I think about Thursday, but until then I'm going to really enjoy myself, so Happy New Year everyone!

Friday, 20 March 2009

Frid. 20th Mar. 2009

What a beautiful day and I can honestly say I've felt much better. I still have the shortness of breath and a rather overactive stomach, but I cooked some smoked peppered mackerel and new potatoes for our lunch and really enjoyed it, with very little after taste.

We watched a short documentary by the late Wendy Richards last night. I could really identify with some of the comments she made and I was pleased that she recognised the fact that some people experience a lot of side effects, something she thankfully avoided.

Graham and I talked about the programme today as it obviously raised some questions and worries. For me it highlighted the fact that the future is uncertain and however much we want to believe that the treatment has been successful, there is always that possibility of a recurrence. As Hilz pointed out last night when she called, the last treatment can leave you feeling as though your 'safety net' has been taken away and that's just how I feel. I know in reality that there is always someone there to advise and support, but it does feel strange.

Thursday, 19 March 2009

Thurs. 19th Mar. 2009

Not sure what's going on with me today. I had to get up twice in the night, but this morning I can't seem to get off the loo. Added to that I'm experiencing 'mood swings' and while Graham was out with Daisy (a matter of around 40 mins), a dark cloud descended. Suddenly nothing seemed to matter anymore and I needed to get out somewhere, anywhere.

We didn't know where we were going when we set off, but we ended up doing a cross country drive to Helmsley where we visited 'Nice Things' a little cafe in the market square. I did try a sandwhich, but I don't really have an appetite today, which is just as well as it would mean an urgent toilet visit and I hate that when I'm not at home.

It's a week today that I go for my last chemotherapy and even as I'm typing this I feel tearful, which makes me think there are some anxieties lurking just below the surface. I actually feel as though I want to go somewhere quiet and have a good cry, but that's not productive and seems a bit self pitying, so I'll either read or have a nap, or both!

P.S - I had another letter/card yesterday from Joan in New Zealand. It also had a really pretty coral necklace in it. I feel so lucky to have such good friends, Joan has phoned, e-mailed, written postcards & letters regularly while they've been away. They arrive back a week today and by the time I see her and Gerry I will be on the road to recovery - I can't wait!

Wednesday, 18 March 2009

Wed. 18th Mar. 2009 'Sunshine, Music & Kitty''

A foggy start to the day, but turning out beautiful again. I walked the dog this morning as Graham had to go out. It's always nice to do the 'normal' stuff, but I was acutely aware of the shortness of breath again. I've nearly finished my antibiotics and I feel well otherwise, so what the hell is this?

Anyway I can't complain as I've had a super day otherwise, with a visit from our friend Allan. We went to the nearby market town of Howden and had a light lunch. When we got back Graham and Allan sat outside playing and singing, it was so relaxing listening to them and the birds chirping away.

I've just cut our cats claws as she's very old. Kitty was born in a cupboard when we came back from Africa and has grown up with the children. She is 21 this May and is so thin that she looks like someone has made her with pipe cleaners! Kitty's bones are so delicate and her legs bend all over the place with arthritis, yet she seems perfectly content and eats more than the dog. If she was in pain I wouldn't hesitate to take her to the vets, but she purrs and cleans herself, puts up with Daisy who tries to give her face a wash, which knocks her over. She totters around and we think she can now 'limbo' under the door. So by way of a change I've posted a picture of Kitty.

Tuesday, 17 March 2009

Tues. 17th Mar. 2009 'Tentative steps'

Slept reasonably well although I was getting rid of fluid on a regular basis, which tends to happen every now and then, so I'm sweating profusely all night and need three or four trips to the loo. However, feeling not too bad this morning and as I promised to call Margaret (my boss), it seemed like a good time to 'bite the bullet' and log on to my work computer. I have done this before, just to clear my in box, but today I wanted to remind myself where various bits of information are and re-acquaint myself with the format.

Well, you'd think that would be easy enough wouldn't you, but the first problem I encounter is not being able to get a remote connection to the BOC site. This always freaks me out as it means a call to the IT Service desk and I'm afraid me and IT by phone are not a good combination. Also I know I will have great problems getting a 'Network connection' on my works mobile which is useless from here and many other sites I go to. In fact, after seeing 'Watchdog' last night I think BOC should be changing their provider as they're paying for phones which don't work much of the time.

I made the call and explained the problem, which happened once before. The very nice chappie in India told me it was no doubt a problem related to our Wireless connection. Now, IT expert I'm not, but this I knew wasn't correct as our connection was good and strong. But the nice chappie is adamant, until I remind him that I can access Google and other Internet sites, then he goes quiet for a while and asks me my password, which I give him. 'Try to connect again please' and this time it works. "So what was the problem" I ask, " It is because you put in the wrong password three times and then it locks you out". Hmmmm, " But I know I put in the right password and anyway it did it on my first attempt - but hey, it's working now, so thanks" (does he really think I'm that stupid, chemo or not).

I am by this time quietly seething and can feel my levels of anxiety creeping up before I've even accessed my work. No wonder people get stressed, technology is wonderful when it works, but when it doesn't it's just a pain in the 'aspect'. Anyway, mission accomplished, so I'll stop moaning now.

Monday, 16 March 2009

Mon. 16th Mar. 2009 'Spring is sprung'

Oh wow, I think Spring is definitely here and today was a pamper day for me, relaxing, enjoying the sunshine, getting some well needed fresh air and all with someone really special, my hubby!
We ended up in Knaresborough and just wandered around the little streets finding the charity shops and of course the tea rooms.

Tired now, but it's been a good day. I think I am improving, apart from some gastric problems and a large bruise on both wrists, courtesy of the Doctor I saw on Thursday. I still have some restriction in my trachea however, it reminds me of the feeling you get when you've run really fast, except it's higher up. It does worry me a bit, but I'll be able to talk to Prof. D a week on Thursday and maybe get some answers.

I'm struggling with food at the moment too and I'm only just maintaining my weight. Don't get me wrong I will suddenly feel very hungry, but often, as soon as I start eating I can't face it. Certainly sweet foods do nothing for me at the moment, they taste awful. I've forgotten what it's like to really enjoy food and drink, but I'll be working hard to remember once I've finished all this!

Sunday, 15 March 2009

Sun. 15th Mar. 2009 'Birthday Celebrations'

Another beautiful morning, I'm feeling marginally better and looking forward to a family get together in celebration of our Uncle Peter's Birthday (Mum's brother). Pete and Beverly live down South and they're here for the weekend to see York and visit Mum's grave.

True to form, as soon as I feel slightly better I want to push myself and I decided to do Jamie Oliver's Rice Salad and Potato Salad, thinking it would be nice and simple. Well, it is a simple recipe, but the prep takes ages and I began to wonder if I would finish them. Happily I did and we spent a really nice afternoon at my Sister's house. So the photograph shows from left to right, Sister in Law Tina, Patty, Uncle Peter, Bev & Mike (on the floor), my brother Alan, me and Graham.

Saturday, 14 March 2009

Sat. 14th Mar. 2009 'Spring Thoughts'

Woke to another really nice morning and as I slept well, decided to go to York with Graham and Louis as I need the fresh air and exercise. We didn't stay long, Graham had an eye test booked, so I had a mooch around the shops while it was still fairly quiet.

On the way home I was staring out of the bus window admiring all the new Spring flowers, everything looked so fresh and new in the sunshine and it reminded me that I should savour those moments and commit them to memory, we all should, because we never know if we'll get the chance to see them again. I love Spring and May is my favorite month, it's my Birthday, our Anniversary, Roo and Gor's Anniversary and tends to be the month we go to the beautiful Isle of Skye.

This year it will be even more special as it will mark the end of my chemotherapy, mastectomy and reconstruction should be complete and I will hopefully be planning ahead. It's not the end of the journey, but it will hopefully feel like a new beginning, just like Spring.

Friday, 13 March 2009

Frid. 13th March 2009 'Red Nose Day'

What a beautiful day, it's been a real tonic for me despite my ongoing problems. I sat on the outside step this morning and re-potted some of my house plants, marvelled at my tiny tomato seedlings which have just popped through and groomed the dog (very therapeutic).

For some reason I really fancied 'Toad in the Hole' today and as my son Louis and his fiancee Colleen were coming I decided to have a go. The beating in of the egg and milk nearly finished me off, but I managed. Sadly I only ate a few mouth fulls as it tasted disgusting (to me that is), it really frustrates me and I can't wait to get my sense of taste back, I think I'll have a big party to celebrate!

Anyway, it's 'Red Nose Night' on TV so I'm sure there'll be lots of laughs and some tears.

Thursday, 12 March 2009

Thurs. 12th Mar. 2009 'A Grand Day Out'

Still not feeling good this morning and once out of bed was aware of a tight feeling in my windpipe when breathing, so I decided to ring the unit and was advised I needed to go in for tests.

We arrived at 10a.m. and I was seen fairly quickly. Yet another cannula was inserted, which is now quite a painful procedure as the veins in my right arm are a bit like old knicker elastic. The bloods go off and we sit for a couple of hours waiting for the results and getting very hungry. Initially it was felt that they were 'not too bad', but it was decided that I should wait and see the Doctor.

Another hour later (not that I mind waiting) a rather young female Doctor takes a full history, does the necessary physical checks and then decides to take some arterial blood, which is slightly more difficult as the artery in the wrist is small. First attempt fails, so she goes for the other wrist and sweet though she was, it became obvious to me that she was quite new and rather inexperienced, especially when she performed a movement straight out of 'Twister' trying to reach a piece of gauze from the trolley while holding the needle in place. Suffice to say the needle dropped out of my wrist and I think she narrowly avoided a 'needle stick injury'.

The above was followed by an ECG, and a trip to the X ray department for a chest X ray. We returned around 2.30p.m. with a much needed sandwich and waited to see whether I had to stay in hospital. Finally at 3p.m. the Senior Oncology Nurse told me that my white cells were going down and that would require antibiotic cover and monitoring, but they couldn't find any reason for my aching bones, fluctuating temperature and 'winded' feeling, so I can go home.

One last wait in pharmacy - wondering why it takes 20 minutes to put 14 tablets in a box and then we're finally on our way home - A Grand Day Out Grommet!

Wednesday, 11 March 2009

Wed. 11th Mar. 2009 'I want to give up now'

Yes, I am truly brassed off with the whole thing now. Several days of feeling completely wiped, generally ill and useless, combined with aching joints and now the all familiar diarrhoea is making me seriously consider not having the last session. It would be so great to think 'that's it and I can get back to feeling normal'. I can hear everyone saying 'but it's only one more' and I know I'm close to the finish line, but when you feel so crap that doesn't help and all I can think is that I have to do this again in a few weeks. I'm very low generally this morning and admit to a few tears, which doesn't help and tends to make Graham feel like he should be doing more, but there's nothing anyone can do, so I'll try to get on with the day as best I can.

In response to the above, my daughter Roo dropped everything and came through from Ilkley to stay the night. It really made a difference to the day, we ordered a Chinese, watched a few episodes of 'Sex in the City' and a 'Chic Flic' which took my mind off how I felt - thanks Roo.

Tuesday, 10 March 2009

Tues. 10th Mar. 2009

Decided to stay in bed today after a really horrible night feeling hot one minute then unable to get warm the next. Fortunately this does seem to have subsided and my temp. is hanging around 37c, but I was getting worried, fearing a trip to the hospital. I am also experiencing random burning pain, usually along my ribs, but last night it was across my shoulder blades and just added to my discomfort.

I'm still not right this morning, but I'll just have to hope things get better as the day progresses. The worst part is my total inability to do anything, I can't even concentrate on reading and I end up just sitting around all day feeling completely useless.

Had a visit from my brother this afternoon which brightened the day up. Alan had found some letters I wrote to him when he lived down South and they were really funny with little illustrations. They also pinpointed specific times in our/my life, ie when I was expecting Ruth, when Graham and his Dad removed the engine from a Morris 8 (we liked old cars) and even going to a Jethro Tull concert. One of the letters was signed Lesley, Graham, three cats and half a baby!

My new settee arrived late in the afternoon, not that I have any interest at the moment. However, it would look better with 'feet'. They'll now have to be posted and in the meantime we can sit on it, but getting up requires much effort and a lot of groaning!

Monday, 9 March 2009

Mon. 9th Mar. 2009 'Ok, enough now'!

No blog yesterday and I'm struggling just to stay sitting upright today. I really feel physically wiped out and I've already been back to bed for several hours. Despite the fact that this is the 'last but one' I want to scream 'enough now'. The only problem is I don't even have the energy to scream or cry, which is maybe just as well. Graham says it's as though I'm 'not there' during these days and to be honest that's a good description.

So not much on here today, just trying to cope and looking forward to better times.

Update: The day hasn't got any better and I now feel really unwell, aching joints, weak, hot and cold. My Sissy is coming over for a couple of hours, but I don't think I'll be very good company.

Saturday, 7 March 2009

Sat. 7th Mar. 2009

Woke twice last night with my whole body trembling and soaked in sweat, a now familiar pattern. Eventually found myself wide awake at 4a.m. so decided to listen to the mini iPod. I can manage this operation in the dark, so I put in the earplugs and switched on. What I didn't realise was the volume was up at maximum and funnily enough the first song was by an African group called Juluga. Well, the first line is "I'm sitting on the top of Kilimanjaro" and trust me I nearly was. I sat bolt upright and tore out the earplugs, while uttering an appropriate expletive.

Fortunately my ears were ok and I didn't suffer a 'temporary threshold shift' as we call it in the OH profession. Needless to say I couldn't go back to sleep, but the selection of music was great, even if some of the songs made me cry.

My reduced steroid decision means that I have felt more nauseous, but so far my stomach is feeling much better than before and despite having a curry last night, I haven't suffered any heartburn, so fingers crossed. All other side effects are kicking in which is depressing and I'm sure the taste side of things is worse - oh well never mind, I will just dream about some treats in a couple of weeks time.

By the way, I apologise for any silly spellings or grammar not picked up by the 'spell checker', but this too is a side effect, some of the simplest things just disappear in the 'chemo fog'.

Friday, 6 March 2009

Frid. 6th Mar. 2009

It's been a beautifully sunny day today and my Son Joseph came over for the afternoon. Joe is just applying for an electronics degree at York and I'm so chuffed that he's finally decided to do something academic, he's a clever lad and maths has always been his strong point. He's also a good looking boy don't you think (well I would, I'm his Mum).

Found it difficult to get to sleep last night and then woke again at 2.30a.m. and couldn't stop millions of random thoughts, memories and anxieties rushing around my head. This always happens first night after treatment and is a side effect of the iv steroids. It can be very tiring and distressing as I can't stop my mind from racing.

I've decided to reduce my steroids and monitor the effects. It means I may have to take some back up anti-sickness tablets (as discussed with my nurse) as well as the Granisteron anti-sickness tablets, but I felt it was worth a try to see if it lessens the gastric effects. I have felt slightly more nauseous, but nothing I can't cope with at the moment. My taste buds are already being affected and the foul taste is back, so that'll be it for a couple of weeks.

Thursday, 5 March 2009

Thur. 5th Mar. 2009 'Chemotherapy No5'

(No Anne, not Mambo No 5)
Up very early this morning to find it's freezing and foggy! I didn't sleep well and combined with a fairly late night (well worth it), I'm feeling rather tired, not to mention anxious and a bit emotional. Arrived on time and didn't have to wait long before being called through.

We talked through my 'homework' sheet, which is a tick list of side effects or problems encountered and I admitted to feeling very tearful. This is apparently quite common when people reach the 4th and 5th treatment. I also mentioned a pain in my ribs on the right side which has been nagging for a few weeks. Any aches or pains become really significant and scary, but I was re-assured it was probably nothing. I will be seeing Prof. D next time, so if it's still a problem we can discuss it further.

I would say that on a scale of 1 - 10 my side effects have probably gone down from 9 to 8 as a result of the 10% reduction in the drugs. That's not much and my nurse felt it was worth altering my steroids to try and reduce the gastric discomfort and reflux I experience. So it's been suggested that I only take my steroids for two days and control any increased nausea with the Metoclopramide. I could if I want to reduce them as well, which I may do.

Finding a suitable vein is becoming difficult, even when I go for the routine bloods. The veins in my right arm are pretty shot, but they don't want to use the left arm as there's a small chance of infection to the would site. That means I have a very painful arm all the time and inserting the cannula is now very unpleasant, but thankfully brief.

The treatment went smoothly and I have a new supply of medications to keep me going (no pun intended). Oddly enough I began to feel the effects of the treatment almost immediately, which has never happened before, so I requested a light lunch at the local Garden Centre and then came home and I went to bed for an hour or so.

I'm now feeling very nauseous and a bit 'spaced out', plus I heard some really sad news just after arriving home. My lovely Niece Dawn told me recently that she was expecting another baby and I was thrilled, but unfortunately she lost it yesterday and my heart goes out to her and the family, especially after all they've done for me. I love you all very much and I know you'll bounce back.

On the upside, there is a good picture and write up in our Selby Times today re: Dawn's fundraising and the feedback from the Music Night has been so good there may well be another at the end of the year.

Wednesday, 4 March 2009

Wed. 4th Mar. 2009

Just been for bloods at Selby, so fingers crossed, not that I'm looking forward to another two weeks of feeling completely crap, but I don't want any delays as this will mess up my surgery dates etc.

I didn't write anything yesterday as it was a fairly quiet day. I went down the road and had a coffee with Pip, a friend I worked with at Nestle and then in the afternoon our old friends Keith and Audrey called round. They live in Aberdeen now, but have family in York. Keith is a very talented sculptor and has just been invited to the Queen's Garden Party in recognition of his work on a 'pictish' style sculpture , which I think is being erected in Aberdeen somewhere.

I also had a chat with our OH Doctor and he doesn't think I should be signed back for any work until I've finished my chemotherapy, which in some ways is a relief as It would be difficult knowing when, or even if I was capable of doing anything, but I was willing to try.

Chemo 'fog' is a real problem at times and from what I've read it can last a long time after chemo finishes. It affects my memory at times and in conversation it can be difficult to string sensible sentences together. An example of the former happened yesterday when we presented the cheques. We were both asked for our addresses. Dawn gave hers and then it was my turn - 'Mrs Lesley Hodge, 68 ........ (turning to my sister in a panic), what's my address Patty?' We all laughed, but it can be quite scary.

Not sure what to do today, I feel like I want to pack lots into my last 'good day', but I'm conscious that I need to be rested for tonight as I'm going to watch Graham do an 'Acoustic Gig'. So I'll potter at home.

Monday, 2 March 2009

Mon. 2nd Mar. 2009

Well, I'm recovering slowly from Saturday, can't believe how easily I can be drained of energy, plus I've had aching joints, but that seems to be easing now.

Made the trip to York Hospital today to present Dawn's cheque for £850 to the Cancer Care Unit. Happily we were also able to hand over a further cheque for the Music Night. I've had so many calls and e-mails from people to say how much they enjoyed the evening, so the effort was well worth it.

Picture shows Dawn handing the cheque over to Mr Paul Mayor who kindly agreed to appear on my blog and was extremely grateful to everyone who contributed.

I would like to personally thank John and Heather for doing the bulk of the organising and for their friendship.

Sunday, 1 March 2009

Music Night Pictures - Sun 1st Mar 2009

Despite the fact that I did very little last night, other than enjoy myself, I am completely wiped today, I'm a bit short of breath and my legs are wibbly wobbly. So not putting much on my blog today other than a couple of pictures.

The final total for the evening was £1,260.00, which is really fantastic, so thanks again to everyone.

Sat. 28th Feb. 2009 'Music Night - Fundraiser'

We were both up early this morning and I'm already excited about tonight. Went to York for a brief visit and I found a nice top to wear.

Later in the afternoon, my Sister Patty and my Niece Dawn came over as the 'Selby Times' paper wanted a picture to accompany a piece about Dawn's fund-raising success. Ruth arrived at the same time, so she got roped into the picture too. It was fun and we're looking forward to seeing the article next week.

The Music Night - Arrived around 6p.m. to help set up the hall. By 8p.m. the hall was filling up and I found myself greeting friends and family, some who I haven't seen for ages. It was quite an emotional but really happy time. Lots of people, including us, had brought picnics, so there was a real party atmosphere.

The music was wonderful, Graham's spot was superb as usual, although the hall was quite noisy, which was a bit off-putting for him and meant he couldn't do some of his nicer ballads. John Coleman, Heather (John's partner) and Graham Metcalfe did a great set including 'Duelling Banjos', which got a huge response.

The evening was finished off by 'Hot Not Bothered' a Ceilidh Band made up of some really good friends of ours and everyone joined in the dancing.

It was a fantastic evening and we raised £1,260 for the Unit, which is a wonderful achievement.
So thanks to everyone who attended, donated or helped in any way.