Friday 29 January 2010

A Year Ago

Photo copyright: Maggie May

A year or so ago, my husband and son were underpinning the kitchen and searching for rat runs because we had nests of them up in the kitchen roof in a place where we could not get to them at all. We had nothing but problems from the start. Just at the wrong time it started to snow and then Sam hurt his arm through all that digging. Everything was held up.
Eventually the underpinning was finished and because there didn't seem to be any sign of rats whatsoever, even though we had been assured by Pest Control that they were coming from underground, in late Spring we had scaffolding put all over the garden and a tin canopy spread across the kitchen roof to protect it from the elements while the roof was taken off. The rat run was then discovered, chewed electrics repaired and a new kitchen roof was reconstructed. The source of the problem had been found.
The interior of the kitchen took months to finish and the house was really cluttered as we had everything stored in boxes.
All this caused great stress to me. It was very difficult to cook and keep anything clean.
I often think back to those times and think what a near squeak we had with all that commotion going on. You see, I didn't know about my cancer then. Think what a disaster it would have been if I'd have had to start chemotherapy with all that disruption around me. Unthinkable.
I suppose that is one of the things to be really thankful for.... that the kitchen was in a reasonable state before I knew about what was in store for me.
Seems when we get over one problem in our family, that we are instantly met by another and this is how it has been for years. One thing after another.

I just want to thank all the readers who have been supporting me with thoughts and prayers during my time in need. You will probably never realise just how much you have been helping me. EVERYONE. Just by being there and putting up with me when I have nothing to say about normal life apart from my recent experiences of chemotherapy, wigs and anything else associated with cancer.

There are several ladies though who have been supporting me with email, thoughts and prayers and through comments on my blog. They are the ones who have been down a similar route and who have encouraged me, given me information and urged me on.
Seeing their bravery through their own cancer has helped me to battle my own.
I just want to mention some of them who are now over their treatment and getting on with their lives.
One such person is Bernie whose blog is called On My Own. She lives in Canada and apart from emailing me with words of encouragement, she has even sent me a great little parcel of goodies from across the pond. I thought that was really kind of her and I was so thrilled.

Janine from Sniffles and Smiles lives in the USA and has been a tremendous prayer supporter and always remembers to email me when I seem to need it most, even though she is an extremely busy lady and has had to take time out recently, to catch up with other commitments. She told me a very useful tip..... that if I drank plenty of water while having chemotherapy I wouldn't feel sick. There is a lot of truth in that and I take bottles of water with me and drink all the time I am having the treatment.

Brenda whose blog is Brenda's Blog from Paraguay has recently completed her chemotherapy and describes fully her apprehension about living with the stress of waiting for scan results every six months. I can imagine myself being in the same position eventually. She leaves me useful comments and I find her posts helpful too.

Iota, sometimes known as guineapigmum whose blog is called Not Wrong Just Different is a British mum with a family who transported to USA. She sought me out when she read about my problem and left comments on some of my posts. She has completed chemotherapy for a similar type of cancer to me and her hair is on its way to growing back, though she feels the process is very slow. I have found reading her experiences very helpful and her bravery and determination encouraging.

Renee from Circling my Head who has been battling cancer bravely for along time. She is cheerful in spite of that and I do admire her strong but accepting attitude. She has always something positive to say.

I must not forget my sister in law, Maria, who doesn't believe in blogging but who is always just at the end of the phone when I need support even though she is often in great pain herself. She had chemotherapy years ago so can empathise.

Ann from Retired and Crazy has recently lost her husband but as he went through chemotherapy a few years ago, she knows what it is like and has empathy with me. We both started blogging around the same time and I found her very helpful when I was getting launched into writing my first posts. I stole many friends from her blog roll!

I must not forget my husband, Harry, who has been battling prostate cancer for years and has recently not had good news about his own health. He has been very supportive, especially when I was housebound during the snow and he risked his neck on the ice to do shopping for me. He was more devastated to hear of my illness than when he heard about his own bad news.
I know when I am ill next week with Chemo 3, he will look after me and be there for me, even though he is not in good shape himself.

There are many other people who have been there for me commenting and urging me on and laughing at things with me and I just want to say.

Is there any one left in Bloggesphere who hasn't read my brother, Eddie Bluelight's Sunday Roast Interview (number 100) with a person that so many bloggers still miss? Non other than David Mcmahon, the Melbourne journalist, writer of best selling books and professional photographer? If it has escaped your notice, then pop over to see what it is all about. He had so many Followers that it would be impossible to tell all of them about the interview that they would probably be very interested in reading.

Tuesday 26 January 2010

Twigs and Wigs

Photos copyright: Maggie May

This last week has been what I call my best week. The week that my blood cells start to pick up. (The white cells in particular are at their lowest ebb on the fourteenth day of the 3 weekly sessions of chemotherapy.) I have noticed that I am not quite as lively as I was at this stage on session one, so maybe my seasoned chemotherapy advisors are right when they suggest there is an accumulative effect when each session takes a worse toll on the body than the last. After all, they have been there. They know what it is like.
However, there is a stubborn streak in me that wants to ignore this and pretend it isn't so. You can all laugh at me later, if I am wrong.

I think it must be a British thing to go out walking in all weathers. I tend to think that my overseas readers think that I am slightly mad for doing it.
I was brought up in the days when everyone walked everywhere. When we had babies we were instructed to put them outside in the garden for a few hours in the morning, in their prams, in all weathers. The fresh air, we were told would do them good. Most of the prams in those days were sturdy Silver Cross or similar type models with lots of protection from the elements. Not at all like the modern buggy.
At that time, I was more worried about the 14 yr old boy next door who used to fire an air rifle at targets down his garden, with only a flimsy wooden fence between him and my son.
However my baby survived the pellets that might have strayed over but he did suffer from asthma later on. I'm not sure if it was through being out in all weathers or if it was because he was a passive smoker, like me because his Dad and all the outer circle of relatives smoked back then. It was positively encouraged wherever you went.
Non of this would have happened today in the climate of over protecting our youngsters, never letting them anywhere on their own or to take any risk of any kind, without an adult being present and I look back in horror now at some of the things that we all did in those days.
I was really on the subject of walking but took a little detour. Sorry about that.

Well these past two weeks I have walked out in all weathers and different friends have rallied round and said they would accompany me on walks and I have a few booked in for this week later on.

I have started to wear my wig lately. At first it took a bit of nerve as I feel I look more like 45 in it.......... from the back, that is and I feel like mutton dressed as lamb.
A few days ago I bumped into one of my livelier work mates while out, wearing my wig and she shrieked with joy as we hugged one another and laughed fit to bust.
"What are you going to do, Maggie, when your hair grows back? Only you look so much younger in that wig and so well."
I suppose she has a point but the prospect of having any hair at all seems a very long way off. Too long to even visualise it. No wonder I feel the cold as I have lost all the hair on my arms and legs too so cannot even shiver properly. Not that I was a hairy type, mind.

I was gardening recently. Chopping back the clematis from the bottom of trees and shrubs because I wanted them to bear flowers in the Spring and late Summer low enough to see them. I completely forgot that I was wearing a wig and I nearly lost the thing altogether when it became tangled in a branch. That was in the privacy of my own garden. Imagine walking under some low shrubs on the pavement, as I often do and suddenly having my hair torn off. I must definitely remember to be very careful when doing such things in future.
When I wear my wig, every one assumes that I am really healthy and expects much more of me no matter what I am really feeling like inside. When I wear a head scarf, I have had doors opened for me and even people urging me forward in a queue because they must assume I am a poor, sick person having chemotherapy. So that is quite a useful thing. I definitely won't be wearing a wig when I am feeling weak.
What ever happens, it does pay to have a sense of humour. My youngest granddaughter says, "Grannie, let me see you under that scarf. How much hair have you got left?"
I would definitely like to see the girls' school work and wonder if they have written anything about hair loss and being ill or if they have even drawn pictures. Children tend to tell it like it is. They are not scared to speak the truth the way we are.

Well I have rattled on about hair and chemotherapy yet again.
My next session is on 2nd February ....... if the pre assessment the day before proves I am fit enough. I dread having the next one but would be gutted if I couldn't.
That will be Session Three....... the halfway mark. Doesn't time fly by?
(When you're having fun?)

I'd like to remind anyone who might not have seen my brother Eddie Bluelights on the 100th Sunday Roast, interviewing an old friend David Mcmahon, the Melbourne journalist, writer of best selling novels and professional photographer who we all used to know through our blogging. Why not go over and learn more about him.

Saturday 23 January 2010

Blaise on a Wet Day.

Photos copyright: Maggie May

When I was just about getting over the worst effects of chemo 2, a very kind person from Church, who I have known for a very long time, asked me if I would like to go to Blaise for a walk at the end of the week. I had previously told J that this was the type of thing that I missed most...... being able to get out of the house for a walk in a lovely environment, like I used to do on my own in the days before cancer treatment.
At the time we talked on the phone, I was still suffering quite a bit from the chemo brain syndrome and I really couldn't visualise ever feeling well enough to be able to go for a long walk. This attitude unfortunately, comes as part of the chemo package, the thought that this time my energy would not come back. However J managed to get me to give a firm date for Friday.
Well of course, by Friday I was feeling quite fit but the weather turned out to be dreadful... pouring with rain from the moment I got up, to the time that J was due to pick me up.
When she arrived, we decided to go ahead with the arrangement anyway and found ourselves at Blaise, a beautiful spot in Bristol, with marvellous walks and scenery. I have posted about this place before and have often visited in the school holidays with the grandchildren, sometimes with all four of them.

Obviously on Friday morning, a normal school day, there were very few people about. The rainy day probably made even less people go there than usual, though a few stoical dog walkers with dripping wet canines in tow did brave the elements.

There is a small cafe near the car park, so it seemed best to start off having a coffee in a dry place. It was good to chat and catch up on our latest happenings because neither of us normally has the time or opportunity to do that.
The rain seemed set for the day, but we decided to go for our walk anyway. Armed with umbrellas we set off, not only soaking up the rain but also soaking in the beauty of the wet trees and grass that looked new and unspoilt.
We walked along to the Mansion and then towards the river walk, passing this stone dog on our way.

We are really fortunate in Bristol to have so many lovely green spaces to walk in.
Then it started to rain really heavily and we turned and walked back to the car.
Walking in the rain with our umbrellas brought me a good deal of pleasure and I was so grateful to J for taking me there. Thank you J if you are reading this.

I would like to bring to everyones attention that this weekend, a very important person is being Roasted by my brother, Eddie Bluelights. It is none other than our old friend, David Mcmahon, the Melbourne journalist, author of several best selling novels and professional photographer, who has helped and inspired so many of us in the past. Every ones chance to learn more about him.
Please go over and see Eddie's Sunday Roast.

Thursday 21 January 2010

Walk to the Park

Photos copyright: Maggie May

Last Tuesday, exactly one week since chemo 2, I started to really pick up energy and I decided to go to a nearby park. It involved a few hills that I tackled quite easily. It seemed strange that I was out when I would normally be at the After School Club. There were no children anywhere. In fact there were very few people out and about.
There was a sharp coldness to the afternoon and a strong breeze, yet the sun was shining in spite of that.
Just being outside in those conditions made me feel alive again. I could feel the health coming back to my body.
Everything seemed good.
I felt better.
I was better.
I had taken my camera with me as I wanted to snap something really unusual. A beautiful bird, or maybe if I was really lucky, some other wild creature that wasn't often seen.
Unfortunately the only thing that seemed alive, apart from me, was this large crow. Oh well....... perhaps next time.

Wednesday 20 January 2010

Wordless Wednesday.

Snow cats.

Photos copyright: Maggie May

Sunday 17 January 2010

Sunshine After Snow

Photo copyright: Maggie May

Sometime ago, before the snow came and long before my chemotherapy, I took a photo of this cross made out of pansies in the front of a church not too far away. Today it is sunny and I went to my own Church and the sunshine was a sign that today is the beginning of my starting to feel stronger and over the next two weeks I will pick up and feel normal...... ready for the next onslaught. No, I must not think like that or else I would get too depressed. I live one day at a time. That is the only way. I am a fighter and I won't give in! I must remember that.

I looked into my photo folder and wondered how to illustrate this post. The cross sort of jumped out at me. Yes........ a new beginning. Keep my eye on the cross. I have to start from scratch and build myself up all over again.
It was good that there wasn't any snow to have to contend with on my way. I didn't have to worry about slipping and the sunshine was heartening.
People in church asked me just how chemotherapy affected me. Well today I felt physically very wobbly.
All I know is that I cannot speak coherently. I have what the hospital calls *chemo brain*. I think writing is easier than speaking as I just can't get out the right words when I try to speak. I am hoping that these brain cells of mine are not being killed off, but only stunned, as at my age I need every one of them.
The last five days have been really bad. However there were some improvements to last time. I wasn't sick and I didn't suffer from the hallucinations that were obviously caused by all the steroids that I had before.
I was very weak and for several days I felt that I might die from exhaustion but I guess I am a tough cookie and it will take more than this to finish off Maggie May! The very worst thing that I have to bear is two days of screaming joint pain. It is irritation of the nerves in all my limbs. That is a recognised side effect that the hospital gave me and I guess there is no way round it.

All the while that I was lying watching TV or listening to the news, when I couldn't do anything else, I kept thinking that even in my sorry state I am still better off than the people in Haiti. That terrible earthquake and the plight of the people played on my mind greatly.

I would like to thank everyone for the continued prayers that have been sent for me and for all the thoughts and gestures that come my way. It means a lot to me.
I hope my brain will clear and that I can get off this chemo subject for a while....... it seems to have taken me over. There used to be a life outside of it but that seems like a dream now.

Friday 15 January 2010

Round Two

Photocopyright: Maggie May

Round Two is still in full swing. I am feeling as though all the stuffing has been knocked out of me. No energy. Just doing things for survival, washing, eating, keeping clean seems a major feat. The house seems to be in a mess and I have no energy to do much about it. I have managed better without the steroids but I am much more tired than last time.
I am in the middle of bad joint pain right now.
Managing to eat and sleep.
Looking forward to the weekend when things might start to pick up for me again.
My lovely haircut has disappeared and I have now got a moth-eaten head. Practically bald.

I am sorry not to be able to visit and comment yet. I daresay I will feel more like doing that soon.

The snow is gradually thawing but I don't feel up to going out yet.

I was pleased to see that my daughter, Deb, has recently updated her blog. I hope that will be good therapy for her. Why not look her up?

Monday 11 January 2010

The New Look

I Have Had my chemotherapy and have come home very tired. It has been a long day.
Have to let it take its course now and see if it will be any better.
No snow so far.
My spiked stick has been delivered already. No sign of the ice grippers, but I think I will be lying low for a while, anyway.

My son arrived back in Bristol very late on Saturday night and called round to see me on Sunday afternoon. It was great to see him and the girls again after their absence over Christmas while they were in Japan.
As promised, he brought his electric clippers and proceeded to clip off my hair. It felt really good to be rid of the dead stuff. There is about a quarter of an inch left and that is falling out very fast.

Today I went to Oncology to have my pre-assessment ....... blood tests etc and I seem to be in fine fettle.
The doctor was over the moon when he examined me and said he could find no sign of the tumour in the groin. He thinks he has struck gold with the right treatment. He has booked me down for a CT scan in February to see what is happening with the other two behind the stomach. He said he has high hopes that they will be gone too.
So it is Chemo Two tomorrow at 8.15 am.
However, there are to be some changes.
I will not be given steroids to bring back home, as they think that is what caused the hallucinations on day 5 & 6.
It will be necessary to have a dose of steroids before the treatment otherwise my body would not cope with the poison. They also will put in a strong anti histamine and an anti sickness solution intravenously before they connect the chemo to help my body to cope with the shock.
They will give me stronger anti sickness pills and I have got better pain relief for my joint pain. So I feel more confident that I will not suffer as greatly as I did last time. And if I do....... then I know that it will pass after the sixth day.
That is a relief to know.
All I want now is for the roads to keep clear of snow.
I don't care what it does later on. I just need to get started on round two!

Saturday 9 January 2010

Head Wear, Friends and Ice

Photos copyright: Maggie May.

I am wearing scarves mostly because my hair is still shedding very slowly though the scalp has now settled down and is not hurting. However, it is still very itchy and I definitely haven't got nits. Everything is about to change very soon as my son seems to think that he is going to shave my head, for some reason. Maybe it will be payback time for the days when I had to say no to him as a child! What better way than to shave off a mother's hair for revenge! I am waiting for news that he has landed at Heathrow.
I had quite a selection of scarves in my wardrobe, so these ones will *see me through* chemo I should think.
I did buy the little hat from a company that supplies chemotherapy patients with head gear. It comes with different bands to clip round the edge to make it look like I had a few different hats.

Of course wearing a winter hat, no one knows what is under there, hair or no hair.

The weather is still too icy for me to go out but yesterday I had three visitors during the afternoon.
The first was from my lovely young neighbour across the road (who has 2 young children) and who I have never really got to know very well because she has only been in the house a relatively short time and I have always been scurrying here, there and everywhere on my way to work and ferrying the grandchildren to some place or other. However we have always passed a few words of greeting on our brief encounters and it was really lovely to get to know her better and she brought me a delicious banana cake, still warm from the oven.

The second visitor was a good neighbour and friend from along the road. When we both had cats (two each) we used to look after them for each other at holiday times thus saving ourselves much money in cattery fees. As our cats sadly died of old age, one by one, we were still available to house watch for each other. So I was fascinated when C brought a long a stick with a spike on the end, that she had bought for rambling. It was an expanding stick with different heights for different sized walkers and C said that if she felt she was slipping, the stick would hold her up.
C also was willing to shop for me if I needed anything and I know that I can always ring her if I have a crisis of any kind.

The third friend (N) is the mother of my youngest granddaughter's best friend. She has been a great support to me, calling round and listening to me moan and sharing my fears about my disease and treatment. The school had opened again yesterday, so N popped in to ask if I needed anything on her way to school to collect the children.
All these three friends are much younger than me. In fact they are young enough to be my daughters and I am for ever grateful that they are not put off by me being so much older than them.
When I was younger I used to do the same and adopted several older people who I had regular contact with and was extremely upset when they inevitably died because they seemed to have much to offer me by their friendship and I can honestly say that I still miss them.
It was great to have a good natter to these lovely *youngsters.* I know two of you read my blog, so thank you very much for your kindness and for thinking of me.

Next winter I am going to be better prepared. A friend in Canada Mary G told me about some ice grippers to fit on the end of my shoes. They have spikes or studs. She recommended a firm in the UK where I could get them.
Next year I will be prepared and will not be housebound again. I will get a stick with a point and with my ice-grippers secured to my feet, I will be darting her, there and everywhere. I will not end up being a prisoner like this again.
I will be completely fighting back.
If we get a heat wave next winter, then you know the reason why! Its because I am prepared for snow.

My sister in law told me that I could cut the sleeves off an old pullover and put them over my shoes. She said that this would grip the ice and told me to practice going up and down the road and see if I can balance. I will be doing this, I can assure you. Maybe this will get me to church tomorrow. If I get there, I will wear my wig and shock everyone.

Thanks to everyone for your suggestions. Much appreciated.

Well I tried out my sister in law's idea about putting something over my boots...... so I cut up a M&S Tee shirt and folded a large piece under each boot, tied in knots at the top. Do you know? I walked round the block no problem. I felt like whooping for joy. When I got home I was whooping for joy. I guess I will be going to Church tomorrow after all....... in my wig!

Thursday 7 January 2010

The Shut In Days

Photo copyright: Maggie May

I have got quite used to being shut in the house. The days seem to just merge into each other.
I start off the morning in the front room, where we have a coal effect gas fire. I have a laptop in that room and spend sometime on that. I can see things from the front room window. Not many people are about. The local schools are shut, so there is not as much casual parking and I haven't seen any children about. Some of the cars that do pull out of the space on the road where they have been parked, slide about all over the place and have difficulty getting onto the un-gritted road. None of us has off street parking or garages where I live.
My son and granddaughters talk to me via the web cams. It is good to see them.
My sister in law bought me a jigsaw for Christmas. That is on a board in the back room. I have not finished it yet as it is double sided and takes much longer to fathom out. There is a certain therapeutic pleasure in doing a jigsaw though.
I usually end up turning off the gas in the front room and then spend the late afternoon / evening in the back, where we have another gas fire. However the central heating usually starts up by then.
This changing from one room to another makes me feel like I am breaking the day up into bite sized chunks. See how institutionalised I am becoming!
I am feeling better because this is the week that my body picks up before the next session.
I am not sure yet how I am going to get to the hospital on Monday and Tuesday of next week.
I was listening to the local radio and a lady who had to get to a hospital appointment urgently rang in to say that a taxi firm had charged her £25 each way! Like me she only lives about 2 miles from the hospital. People rang in to say that the normal fare should be £8 each way. Obviously that firm was trying to make some money out of the snow.

My hair dresser friend (who helped me chose the wig) has been round to see me twice. The second time was today and I asked her if she would shave my head. The scalp is very sore and the hair is coming out so slowly and shedding everywhere. It looks very dead and it is totally unwanted now that I know it has to come off.
Once again, she told me she couldn't bring herself to shave everything off, but she said that she would cut it very short about an inch in the longest place and nicely shaped up the sides. This did in fact look very nice and the front looked like a punk sort of style all sticking up. I might wear it like that when the hair is growing back. While she was cutting the back a large chunk came off in her hand...... so I don't feel I can go around with a bare head in case it does that again when in company. So I am back to wearing a scarf. I feel as though I have changed my religion to a middle eastern one, where the hair has to be covered. However,the hair manages to find a way out of the scarf and ends up sticking to my clothes down my back. I didn't realise that I had so much. It has always been very fine, fly-about hair.
My friend came unexpectedly today by bus. (She lives several miles away.) She came with bread and milk and pizza as well as bringing some cake treats. She also brought some *pick me up* Bible quotes written out for me, so that I could look them up when the going got tough.
I will be forever grateful to her. She made me feel like it was Christmas all over again.
That is true friendship, isn't it?

Monday 4 January 2010

The Big Freeze

Photo copyright: Maggie May

How the weather has changed from my last post when we went on that lovely walk. Ever since, I have been a prisoner in the house. The side roads where I live are treacherous and ungritted and the pavements are like ice rinks. Unfortunately I just cannot take the chance that I might break a bone, as that would land me in big trouble.
My poor husband, who is not well himself, goes out and risks his neck and gets supplies in for us both.

My daughter drove back to the east coast on Sunday. I felt really sad to see her go and worried about her journey. However, within three and a half hours she rang to say that they'd arrived safely.
My son is still in Japan but comes home this weekend.
He left me a message on his blog for the new Year that touched my heart. Please look it up if you have the time. The Mighty Sam....... arigatou.
I will be so relieved when he comes back.

This weather has proved to be the spanner in the works as regards my treatment because I am so dependant on my husband for everything. Lifts to the hospital, getting food supplies in.......everything.
Within a short time I have gone from being a capable granny in charge of children and working in two responsible jobs, to a person who has been plunged into the role of a much older, housebound pensioner....... just because I can't get out.

I am feeling stronger and this is my best week out of the three weekly sessions of treatment. I should be going for walks and building up my strength. However, even the new hiking boots that my daughter bought for me while she was here, do not grip on the ice and I am experiencing foot problems with peripheral neuropathy (a side affect from chemotherapy) that stops me feeling at the bottom of my feet, properly. Very scary on the ice as I cannot tell where my feet are placed.
Sorry to moan, but I do feel really cut up about this with no prospects of the weather getting better.
I live within sight of the shops....... but the roads I have to go down to get there do not seem to thaw at all and there is not other way.

My hair is falling out very slowly, strand by strand.

Saturday 2 January 2010

New Years Day Walk

Photos copyright: Maggie May

I have really enjoyed having my daughter and the grandsons for the Christmas period. Some of it was a bit grim while the chemo did its work, but after the sixth day, I started to steadily get stronger and I now feel almost normal (whatever that means).
I am really grateful that I was so well looked after by my lovely daughter, who changed and washed bedding and made tasty meals, did stacks of ironing and sat and held my hand when I needed her to.
It is like a bad dream now. A bit like childbirth....... hard at the time, but hard to remember exactly what it was like afterwards.
Dread the next one though scheduled for the 12th January.

On New Year's Day it was cold but sunny and I wanted to go on a longish walk.
Bristol has some lovely walks and we were taken by car to Clifton Suspension Bridge and walked all round the cliff tops and walked across the bridge and back. I remembered to take my camera and the youngest grandson joined the many on the slide who have helped keep the rocks polished by their bottoms for the next generation. I remember doing that myself as a child! Ouch! Not this time though!