mums lung cancer

A Long Time

2011-01-30T19:06:25Z

Its been a long time since I have posted on this site.

It is with a lot of sorrow that on Monday 24th January my mum passed away.

The full blog can be read at the following link

http://mumslungcancer.blogspot.com/

I hope that the blog has helped at least one person through our journey.

My grief now, is a personal matter so I wont be adding to the blog now.

Many thanks for those people who have supported us over the past 8 or so months.

Being Silly

2010-09-02T22:06:50Z

I'm pleased to say that mum seems to be doing well this week.

She stayed at home on Saturday as these weekends after a cycle of chemo just are a non starter really.

We all went round to her house on Sunday and had a really good day, a good laugh too, though I think it took it out of her in the end, all the laughing. It was just all a bit silly really. Laughing at a blow up chair that had started to deflate and my boyfriend sat on one side and I jumped on the other, as I am significantly heavier than him, he was being flicked off his side and up in the air.

It was all a bit mad, but she said she hasn't laughed that much in ages, and she also said that she has never seen me so happy........ever.

As we all left I think she started to get a bit tired. And Monday when I phoned her, she was still in bed.

She said she couldn't move, and her eyes couldn't focuss, she said it feels like when your 'horrible drunk' mixed with flu (the bit where you cant move your body)

Yesterday (Tuesday) my phone rang at 8am and I saw it was mum, funny that panic always sets in when the phone rings at that time in the morning.

But all she wanted was for me to call and sort her television out as it was flickering. So I called on my way to work.

Also last night me and my son went round for a short while.

She seems to be really enjoying everything at the minute and was well enough to do a 'big shop'.

She said to me last week when I picked her up from chemo that every day since we were told the news, back at the end of June, she has enjoyed EVERY day since.

video can be watched on the blogspot site, please follow link on my profile.

Birthday Wishes

2010-08-26T20:39:14Z

Yesterday saw my Birthday, and also the beginning of Mums 4th and final cycle of chemo.

I havn't blogged for a couple of day because I have been feeling absolutely fine about everything.

Saturday was good, we went for our breakfast and spent all day just watching tv and chatting.

Then last Saturday night I was watching T.V and saw a comedian Russell Howard showing a clip about a website called postpals. I will give the link at the end of this blog.

When I looked at the site, made me appreciate a few things, I was reading about a little girl who is 9, since the age of 6 she has been battling with cancer, her tumor started in her leg, went to her lungs and now in her brain. The same day I went on the radio to talk about this blog, her mother had to tell this 9 year old that there was nothing that they could do for her.

Now..............doesn't that put things into perspective?

Anyway, Sunday I went to church on my own and then took mum shopping in her chair.

While I was waiting for her to get ready she asked me if I wanted to see her hair. I said yes.

I think I knew what to expect as I had been seeing the whisps of hair diminish from under her hat slowly. It wasn't that much of a shock really. We had a laugh about it because she said looked like Richard O Brian in the Rocky Horror Show, though he had more hair!

I also needed to go to another shop but we had forgotton the disabled badge to display in my car window.

As we had the wheelchair in the back, I said well we'll park in the disabled bay anyway, and if anyone pulls us up about it, take your hat off!

I think her skin tone looked a bit grey that day.

I was talking to my boyfriend the other day and said the word chemo. My son (who is two) copied the word. I know he doesn't know what it actually means, but made me a bit sad that it was now part of his vocabulary.

I think I'm making a conscience decision not to talk about it any more in front of him.

Mum was too tired after chemo yesterday to come to my house, but she phoned me and had a chat and sang happy birthday to me over the phone.

She is in for another long day today as she needs blood again aswell as the chemo and maybe more blood tomorrow too.

My birthday was low key, a quiet meal with family, its one of the first years I havn't made a fuss, because what I really want is to stop everyone hurting from this god damn awful disease, and that can't be bought from amazon, ebay or the petrol station.

If you have 5 minutes spare today please click on this link and put a smile on a childs face.

http://www.postpals.co.uk/

Remission

2010-08-21T08:40:33Z

Well.............. Here's a happier blog post............

Followers will know that I have been away for a few days, for a deserving re-charge of my batteries.

While I was away, Mum had an appointment with the oncologist and they reviewed how the chemo was going.

They said that the cancer in all areas (lung, lymph nodes and adrenal glands) was responding to chemo and actually shrinking! They used the word remission, but I must stress before we get excited that it just means that its under better control, not spreading any further and getting any bigger. It will not cure her.

I spoke to mum on the phone and she sounded excited. I suppose the biggest fear when going through cemo is to go through all that and it not be working.

She is scheduled for Chemo again 25,26 & 27th and this will be her last cycle.

From my understanding of it they will keep reviewing her and if the cancer shows signs of growing again they will giver her another 4 cycles of chemo.

This will carry on for as long as the chemo is tolerable.

I spoke to her again last night when I got back from holiday and she sounded so well. She said she has bought herself a new scarf for her head, though apparantly my brother said that she looks like a bedowin.

We are going for our usual Saturday slap up breakfast this morning. And I can say that after my break I truly have come back refreshed and so much happier, focussed and ready to take on the world, his wife and mums cancer again

Guilt

2010-08-14T23:28:10Z

Well after all my whinging someone has just managed to make me feel really guilty.
Someone reading my blog on a cancer support site thought initially that I was the one suffering with cancer.

It upset me a bit, but the more I think about it, yes I know the blog is sometimes self indulgant and may look like wallowing in self pity, but I honestly believe that the blog is meant to be used as a tool for emotional release.

It is meant to be a journey of how I am dealing with this, emotionally. How mum is coping physically, and other significant events along the way.

Cancer doesn't just effect the person, but the families too and I wanted a brutally honest account of all the emotions that are involved, even the selfish ones.

Today made me realise just HOW personal the blog is to me, and how deep it does probe my emotions.

I can't feel any shame for wanting to share my felings with you all. Anyone that knows me personally will know that I communicate my feelings, thoughts and emotions a lot better by written word, rather than spoken.

http://mumslungcancer.blogspot.com/

Angels & Demons

2010-08-14T07:41:21Z

I havn't blogged for a few days for the simple reason, I havn't seen mum that much really.

This demon that is my depression seems to have taken hold for the past week, so up and down.

Yes, a lot of it is to do with mum, but what can I do? I suppose ultimately the feeling of being uselessness leads to feeling like this.

Mum has been too tired to come over to my house and when she has been well enough she seems to have other things planned.

Sunday when I wanted to take her to the park, and I had chosen a park that we could quite easily push her about, she had said she was too tired. Monday - she went to the park - without me.

I invited her for tea last night but she said no.

Regular readers of the blog will know that Saturday mornings normally sees us all going for breakfast, but I dont want to go today.

Im going on holiday tomorrow so I need to do other things, plus I think that she knows im upset so if we did something today it would feel forced - like she was just there going through the motions.

However if I don't see her at some point today then its going to be at least a week before I get to see her again, and how does that make me feel? Like I've wasted time.

There will never be another day like today, there will never be a Saturday 14th August 2010 - EVER.

So last night I spent hours crying, out of frustration, anger, it was every emotion that you could imagine - trying to sort through these things in my head.

Then this leads to guilt. Guilt that my boyfriend and son have to see me like that. My poor boyfriend. Ever so supportive, but a realitively new relationship should still be romance and smelling good for one another shouldn't it? Not walking in on a Friday night to a crying hysterical girlfriend who doesnt want to be cuddled, or talk about whats going on in my head.

I suppose I also felt a tiny bit of resentment towards my son too last night, the fact that I can't just jump in the car and go and see mum, because its not just me that needs to get ready, need to get him, and stuff for him to play with, tea time, etc etc. Just too much of a chore. Now that does sound awful!!!!

Sometimes I also think, 'sod it, I got to get used to her not being here anyway, so what does it matter if I don't see her.'

So then thinking about this one - Maybe I want people when I want them? Is that a bad thing? Is everyone else the same? Is that selfish or self preservation?

Last night when we went to bed, I was thinking it's so selfish all the feelings and thoughts that I have had, come on, see things from mums point of view, maybe she wants people when she wants them too............ maybe she feels like shes wasting time coming over to my house..............she will love me whether I see her or not...........maybe we are too much alike.

Tears & Rain

2010-08-07T18:53:30Z

Well there you have it, last night was the first night that I truly cried. Maybe bottling it all up finally came to a head.

I think I knew it was coming when I re-read my latest posts.

So what happened last night to make this sudden summer shower appear from nowhere?

I don’t know , my sister came, she had picked mum up from the chemo. She had a load more appointments for me to write down, and then said that they had told her that they were only going to do 4 cycles of chemo, I asked ‘then what?’ She didn’t know

When I came downstairs from putting my son to bed, my boyfriend gave me a cuddle and this was the first sudden shower. Just from nowhere and in the 7 months that we have been together this is the first time he has seen me cry.

It just felt like that it was all coming to an end. Only 4 cycles and she’s already had 3. I think all of a sudden it became so real. The end was in sight.

My boyfriend wiped away my tears and said that we don’t know exactly what they intend to do after the 4 lots. Maybe then they will do a review and see how its all going and see if it is actually doing any good.

He said himself that she seems so good, when his dad had chemo, it wiped him out for days, but here’s my mum, just last week painting the ceiling.

I must admit that she does seem to be coping physically a lot better than I imagined.

The night before I had a friend over and we got a bit drunk and just talked rubbish all evening . This is just what I needed. No talk of mum and the illness, was great, but maybe on reflection, just an avoidance technique.

When we eventually went to bed, I had a bizarre dream, I dreamt that every member of my family went to Australia, but they had missed the plane, they were leaving me behind. I was trying to get mum another flight and made sure she had her luggage and eventually after a long trip I got her to the airport in time.

Maybe your subconscious does tell you things.

I still feel a bit emotionally wobbly today. Mum cancelled our usual Saturday trip out as she said she was too tired, she just wanted to go back to bed. She asked if everything was ok, I said yes but I think she knows me well enough to know that the tone in my voice said otherwise, I was just doing all I can to not cry.

I've been thinking about all the times at church and people have said they will pray for us,
I know when I go tomorrow I will pray for strength as usual, but maybe it's quite strong of me to show my vunerable side too, especially to those I love.

I really wish that something show stoppingly funny happens over the weekend, as I would really love to make you all laugh again, as I feel this is just all becoming a bit too low, but for now in the words of James Blunt - ‘It’s just Tears and Rain’

3rd Cycle of Chemo is here

2010-08-04T11:48:07Z

To see this blog as it is intended please visit http://mumslungcancer.blogspot.com

How fast is this coming around? We are up to the 3rd cycle of chemo already, I think they have scheduled 6 in total, then a blast of radio therapy on the brain, as a safe guard measure as is likely to spread there next. I have brought my computer and am typing this while we are here! Up to now they have put her arms in water to make her veins more visable and also suggested that she has a top up of blood when she comes back tomorrow. Its quiet in here today, only 3 other people. They have just set the first bag of chemo juice off, and away we go, back on the merry go round again, bloods, chemo, ct's, x rays........... really the list is endless, in between all this they tell you to try and maintain a 'normal' life! I must admit that I am very impressed with the way all this is working and the slightest thing that is wrong with her and they are on it. Sunday, I ended up not seeing mum! After all, I wasnt feeling too good and when I phoned she said that she was cold during the night so thought it best that stay in. We went to the park, I saw a girl there, I say girl, she was probably a bit younger than me, her hair had just started to grow back after what I can only assume was chemo. Made me really sad, even though I am guessing that she has the big 'C' and that she is or has been treated. When I looked at her I felt symptathy........... then I got it. It all clicked into place, why mum keeps her head covered. Its that look, the same one I must have give that girl. A funny look, first, oh whats wrong with her hair followed by, aww she has a small child, sympathy for her, empathy for her family admiration for seemingly not caring less and living her life. But you know what? None of this I KNOW, I am only assuming. But Im sure if people who are reading this, those who have/had cancer will no doubt had people look at them that way, and the 'well' people no doubt at some time in their life must have looked at someone in the same way. I know mum has said, and keeps saying that she just wants everyone to carry on as 'normal' God I hate that word. Normal! What the hell is 'normal' about a rainy Wednesday in August (yeah, that bit might be normal as we are n the throws of the great british summer) sat in a cancer unit while they are pumping my mum full of chemo juice (as I have now begun to call it) to try and keep her alive. I read a post on another site, written by a woman in a very similar situation to me, who said that everyone keeps asking her how her mum is but she feels like no-one really wants to listen to the answer. I totally get that. Sometimes you feel as though people ask out of courtesy, thats the beauty of this blog - if they really want to know then they can just drop in. Im not bombaring my social network site with all doom and gloom and ramming this illness down everyones throats, this is separate. This line will no doubt come back to haunt me, but there ARE other things going on in my life other than this illness. It's not on my mind ALL of the time and its not ALL I talk about it and it doesn't always make me sad. Saturday night I went out and had a whale of a time, you wouldn't think to look at me that there was anything this big going on. Im still me, Mums still her, our lives havn't altered THAT much, we still laugh at the same things, (maybe more than before) Still get upset by the same things. Our lives have remained 'normal' This is truely a rollercoaster, as you may be able to tell from my tone, 'normality' is good, but then its frustrating because its not......... That is so hard to explain and I hope that you get what I'm going on about.

Thank you all for reading, for your support, and hopefully understanding.

xxxx

Be Happy

2010-08-01T09:53:51Z

I havn't blogged for a few days, because I have been feeling a bit under the weather.
Some of it could be alchohol and self inflicted if you get my drift. ............Birthdays and kebab's.

Mum seems to be doing ok this week, she said her dead foot hasn't returned since she has been on these meds so thats a good sign.

I do get annoyed with her at times though, Friday, when I was feeling ok, I phoned to see if she wanted to come over to my house for a while, but she said she was painting her bedroom ceiling!
What the hell does she think she's doing at all? She doesnt seem to get the drift of 'taking it easy'
But I also know that this Wednesday 4th August she is scheduled to have her 3rd cycle of chemo, so I think she rushes around this week in case the chemo wipes her out next week.

I didnt see her for very long yesterday as she wanted to go back home after we had lunch.

I have though, now seen whats left of her hair. It wasnt as bad as what I imagined. It was like fine baby hair just really thin.
I had gone to pick her up and had arrived before she had put her hat on, as I come through the door, she ran over to get her hat, and plonked it on. I said 'well let me see it then'.
She took her hat off, and I wasnt that shocked really, she looked embarassed as she shown me, I just told her that she has to remember that its just an effect of the treatment and not due to the cancer.

It's funny really isnt it, sometimes the hat is the only reminder and only tell tale sign that mum is actually ill. You easily forget that she is ill.

I dont know why, but she said she felt like she wasnt going to see us today. When I was going she said 'If I dont see you tomorrow............' I think she was trying to say something but I kept interupting and telling her that she would see us today no matter what.

Its my boyfriends birthday today and she has sent him a card, a funny one, that we had picked together that was quite appropriate. Normally she would have just signed it, but this time she had actually written a bit more........ 'all the best for the future,be happy'
when I read it over his shoulder, it made me so sad, it was just a jolt that the future won't be with mum.

A day out at the hospital

2010-07-27T20:49:41Z

Well what a day!!!!

Today mum has had blood tests, x-rays, ecg's and ultrasounds.
Blood tests have come back that her blood count is low at the moment and put the number 60 (whatever that's meant to mean) on it. Apparntly if it drops as low as 10 or if she starts showing signs of any infection they will do a blood transfusion.
Because of her low blood count now she needs to be extra careful not to pick up any infections of any kind.
I think now the seriousness of having a demolished immune system because of the chemo is finally sinking in with mum.

The chest x ray that she had done today has come back that the cancer in the middle of her chest is shrinking slightly although the next ct scan that she has (on 9th August) will show more definitive results. The words 'your x ray looks encouraging' are such a nice sound to the ears.

The ultrasound - well this is something else!!!. Mum had been complaining that her right foot keeps going numb and white, (as white as a corpse she tells everyone when she's describing it)
The cancer unit decided that it would be best to send her for an ultrasound, this has shown something that could be quite sinister, a blood clot.

Apparantly when someone has cancer the blood becomes thickened, then chemo thickens again and then because mum was so dehydrated after the first session of chemo this also causes the blood to thicken, this combined with years of smoking and narrowing of the arteries, has caused this blood clot.
They have given her some statin cholestrol drugs alongside asprin to try and thin out her blood and will review the situation the week after he next cycle of chemo.

All in all we were at the hospital about 7 hours.
I cant believe the amount of walking and pushing her about in her wheelcahir I have done.
First, we went from car park to cancer unit, for blood tests and consultation with oncologist.

Then we were told that the scan and x ray might not be able to take place until 1pm so we went for a walk and saw my car had been given a parking ticket! A whopping £60, obviously I was furious, I wheeled mum at high speed over to the other side of the hospital to track down the appeals office, to where I was told that I had to appeal in writing.

Taking Mum back over to the cancer unit she said "you do know Im not strapped in this chair dont you?"
Well Ive no idea how fast she thought I was going to wheel her around!

When we got back to the cancer unit they performed an ecg, then told us we could go over to the x ray unit, which incidentally is on the other side of the hospital.

After waiting a short while Mum had her x ray and we returned to the cancer unit. No sooner had we entered we were told that the ultrasound at the vasicular studies was ready for her so could we make our way over there, guess where that was? Just upstairs from the x ray department! SO again we did the trek accross the hospital. Mum said that my way of wheeling her about was not disimilar to the ghost train, especially when I come to get her through doors backwards.

We were seen pretty fast and I went in and watched as they scanned her legs. You could see, even to an onlooker that as the scanner (not that disimilar to one when your having a baby) went further down the leg the artery was narrowing and blood supply wasnt as it should be, this became more apparant when they did the non problematic leg.

We then headed back over to the cancer unit where we had another consult with the oncologist who viewed her x rays and told us the news about it shrinking.
He then told us that he was going to get a vascular surgeon down to obtain his opinion over the 'dead foot'

We seemed to be waiting an absolute age. Eventually the man came, an oriental man, who was very abrupt in his approach but very funny. Definately a no nonsense approach! Fantastic!

I asked if mum should undress from the waist down and he replied, rather cheekily, 'no Ill do that myself in a little while'

he asked mum a series of questions about any other medical history to which mum has always been healthy, he did stress that he was going to ask her specific questions and be very thorough and in return he wanted straight forward quick answers. Mum still did her thing........... "well, I was in the bath and I noticed............ blah blah................been about 4 or 5 days now..........." not the kind of quick fire answers I think he was expecting.

After his conculsion about the diagnosis he precscribed the drugs and yet again we went accross to the other side of the hospital to the pharmacy for the drugs!

While we sat in the pharmacy waiting, mum commented about the vascular surgeon, and said he was quite frightening and that she could picture him with a samurai sword ready for her to get her answers wrong, I then said 'ooo what was that programme?......................Kenco, thats it". After a short pause I corrected myself........." Tenko!!!!"

Good grief, I went off laughing, crying and wheezing to the point where the pharmacist came out to see if I was ok.
I think after 7 hours in the hospital, pushing mum backwards and forwards, getting a parking ticket for something I hadnt done, Just all added up to bursting point!

I did say to my sister this last might that I was concerned as mum appeared to be a bit jaundice in my opinion, to which my sister informed me that mum had just been at the tan wipes - 20 for £1 so looks like mums just gone a bit crazy with them.

Good Weekend

2010-07-26T17:44:30Z

Well I'm happy to say we had a good weekend.

Saturday saw our morning jaunt to the cafe, though Mum refused to use her wheelchair to go to the cafe.

On the plus side she had phoned me at work on the Friday to tell me that her disabled badge had arrived.

After a slow walk and back to the cafe from the car park, we headed off to the park where I knew there was a brass band playing.

For this I made her get in her wheel chair, if not only for the fact you cant guarentee if there was going to be enough seats.

By this time my son, whos two years old, had become a bit tired, so I pushed my son and my boyfriend pushed mum.

We found a spot and sat listening to the band. I got up for a quick walk and when I returned, I realised that mum really wasnt doing herself any favours in this chair at all, hood of her jacket up as it was raining, but it was up over her hat, her whole appearance and body language said she was terminally ill.

I said we need Gok Wan to come and do a new show - 'How to look good in a wheelchair'

We sat and laughed on the bench as we were saying how much patience my sister has to do hair.
I commented that I was like mum in that respect, no patience when it comes to things like that. After a short pause, I said, 'well that explains why your in a hat, and Ive got a clip in hairpiece' lol

Halfway through the band playing I had to dash back home to meet someone who had bought something from me off the internet, when I returned back to meet them, they had started to walk up the road because it had started raining.

Mum was pushing my son in his buggy, while my boyfriend pushed mum, so it looked like they had a little train going.

Mum said they were having a right laugh and she didn't care that people were looking.

I still havnt seen whats left of Mums hair, she did ask me when we were sat in the car if I would like to see it, I replied, 'not right now, while im about to drive off!' Then she said that she didnt want to show me as she thinks it will be too upsetting, part of me wants to see, I feel brave enough now to look.

She said she hates the fact that at the side of her bed, there are mirrors, so now she doesnt even look, just gets up and puts her hat straight on.

Sunday saw mum wanted to go shopping, so I took her, she managed to walk around the supermarket, as slowly she is getting her energy back, from that last lot of chemo. Though she did go a bit wild in the ailses, throwing allsorts in the trolley, like she was Vivian Nicholls.

For those of you too young to know who Vivian Nicholls is, she won the football pools, said she was going to spend, spend, spend, then ended up bankrupt.

I have just had word, while typing this that her appointment for Thursday to review her chemo and have a look at her x rays again to see if everything is going according to plan has been moved to tomorrow morning.

As Tuesday's is quite an important day for me at work, I need to make contact with a few people to see what we can arrange for tomorrow, as I need to take her for this appointment.

Hopefully should be ok, I'll work around something ..................I always do.

If you want to follow the rest of this blog from the beginning please go to

http://mumslungcancer.blogspot.com/

Thank you for all your support, understanding and for being with us on our journey.xxx

Pandora's Box

2010-07-22T20:59:14Z

Im sure you all don't need reminding about the story of Pandora's box.

The most important bit I think is right at the end.
She has opened the box and let out, old age, disease, war, death, then she shut the box.
A little voice asking to be let out, this was the voice of hope, hope said, you have to let me out, the world isn't complete without me.

Ive always loved this story and as a child Im sure my mum would tell you that I used to make up a dance to the story in our back garden.

It seems more important than ever now.

After joining a cancer website community, I posted a link to this blog, I have just read a couple of responses I have had, and one in particular made my eyes water, from a girl who also is going through exactly the same thing.

I knew that people out there were going through the same thing but to finally make contact is something beyond words. Lets just say it's precious. All of a sudden you don't feel alone.

This has given me new hope, that its not all doom and gloom, and although yes its going to be tough but mums cancer could respond to the chemo and extend her life beyond what we think. Its just staying positive that maybe is the key.

Nearly a year ago now a friend of mine was diagnosed with cancer, she lost her battle just a few months later, when I heard the news from her son, I cried. When I went to visit, I cried.
The tears wern't for myself, it was weird, it was the first time I had ever really shed tears for someone else.
After the doctors had taken away all her hope of recovery or response to treatment, I had some thoughts on hope.

Maybe you shouldnt give up hope, maybe you just change what you hope for.

I know that in my friends case, personally, I hoped for a peaceful, painless end.

So tonight, for mum and our family, I hope that we will get enough time to do what we want, say what we want, have some good times, hope that the cancer will respond to treatment, and stay under control, hope for many months yet.

Im sure I can add to this list, but right now this is all I can see, an image of Pandora, contemplating whether to let hope out of the box, I'm glad she did.

new to this blog

2010-07-22T08:59:12Z

Hi everyone at Macmillan, My mum was diagnosed with extensive small cell lung cancer at the end of June. I created a blog to try and help me cope with it all ,as at first I thought my feelings were a bit unusual.

However, I really dont think my feelings were that unique so I decided to share in the hope that maybe I could not only help myself through this but also help others going through similar experiences.

All posts will be copied to this blog, but if you want to follow me so far, heres the link

http://mumslungcancer.blogspot.com/