My mum has extensive sclc

Sunday March 14th - Happy Mothers Day

2010-03-14T21:20:48Z

Mum started the week very tired and was drenched in sweat every time she slept. Part way through the week her chillow arrived and she has not been drenched in sweat since she started using it. That has really made her feel a lot better. She's still tired but not as much as she was at the beginning of the week. We saw the oncologist on Thursday and he's still really pleased with mum. I asked about us going on holiday and he said that was a great ideas and would be no problem.

So we started looking for holiday insurance and went from being on a high to being on a low. Terminal cancer? Want to go away at the end of May? It's too early come back at the beginning of May and we may be able to help you! I understand why they have to be cautious but it was very disheartening for mum who said she hated the word terminal and the fact that it made it sound like she was going to die tomorrow. I stuck at it and miaonline will insure us assuming mums CT scan is ok when w see the oncologist again on April 8th. We've now accepted this but it has made it difficult to make plans and book the holiday we want. I contacted the accommodation and they were happy for me to book with a 20% deposit which they will refund up to a week before we go if I have to cancel. That cheered mum up no end as it looks lovely and we've often said we'd like to stay there. It is right on the beach and close to all the bars and restaurants. We'll have to wait to book flight but think we should be ok. I booked it yesterday.

So today was mothers day. Unfortunately mum didn't feel very well this morning. She said she felt quite nauseous and was aching. She also had some stomach pain. This is not the normal pattern for mum after chemo as normally by now she has picked up and she never feels sick. I wonder is it a side effect of the neulasta injection. She has also been having trouble going to th loo as a result of all the drugs, we think, so it may have been that. After she had been to the loo she did feel better but went back to bed for a couple of hours sleep this afternoon.

She got up for her tea tonight and really enjoyed it so I think she's ok. One of the things I got her for mothers day was a bottle of grouse whisky as she enjoys a whisky before bed and grouse is her favourite. We are sitting here now watching wild at heart and she is enjoying a wee whisky. We've not been out today but we have had a nice day together and Gillian, my friend, also came in with flowers for mum and a lovely card from Mothering Sunday at church for her.

So to my wonderful mum, who I love with every fibre of my being, HAPPY MOTHERS DAY!

Sunday March 7th - One chemo to go!

2010-03-07T18:24:27Z

After a weeks delay due to a low white count mum had her fifth chemo on Friday, Saturday and today. So far she has followed her usual pattern. She was fine yesterday even though she had not slept well on Friday night (we think the steroids keep her awake) and had to take her 3 etoposide bombs. This morning she took her final 3 etoposide bombs at 7.30 and then slept until 12pm. She got up and had breakfast and was back in bed ad asleep by 2pm. She got up at 5.30pm soaking with sweat, we changed the bed and then she had her dinner. If you've had any experience of night sweats and can offer any hints on how to reduce them please let me know. I've posted in general cancer discussions. This is the one thing that is now getting mum down. When she wakes up she could practically swim out of bed and I'm not joking!

My back has eased quite a bit and I plan to go to work tomorrow. I did a bit of shopping yesterday and it did play me up after carrying the bags into the house. Hopefully if I try to take it easy it'll be ok. The district nurse is coming in the morning to give mum her injection of neulasta to boost her white cell count before her next chemo on March 26th. Here's hoping that goes ok because as usual I've googled neulasta and found that there are some side effects. I've not told mum as I have a strong belief in the power of suggestion so I'll wait and see if she complains of anything and then tell her if it's connected to the injection. It seems most of the side effects are mild. I hope so!

March 2nd 2010 - Panicky and frightened!

2010-03-02T18:13:21Z

I woke up on Monday morning and couldn't get out of bed. Why? My back was in agony! I was fine when I went to bed on Sunday night so I had no idea why I was in so much pain. Eventually I rolled onto the floor on my hands and knees and pulled myself up to my feet by holding onto the bed and then chest of drawers.

Having got onto my feet I found myself panicking. Why was I panicking I'd hurt my back, nothing more, but immediately my brain went into overdrive. How am I going to look after mum? I need to be fit! I can't cope with a bad back! What if it's something serious and limits what I can do? I can't take more time off work etc etc.

I got myself in such a state I felt like I couldn't breath, a bit like a panic attack I suppose, I suffered those regularly after my dad died. Before mums diagnosis I would have got a hot water bottle and taken some paracetamol but suddenly my slight injury was a big deal. I was unable to go into work and rung the doctors for an appointment. No appointment until 11am today so got the heatpad and spent most of the day lying flat on my back whilst mum fussed around me.

I saw the doctor today and he said all my muscles down the full length of my spine are in spasm. So why has it happened? He says it's tension. I thought I was coping ok with mums diagnosis but he thinks that it's stressing me out and as a result I'm holding myself tense. I didn't want to tell mum this as she has enough on her plate but when I got home with my new anti-inflammatory pills, which will hopefully sort it out, she said maybe it was because I was worrying about her. I told her not to be silly. I wasn't worring as she was doing so well.

The problem now is I'm worrying more. I have to stay strong, keep fit and remain healthy so that I can look after mum but at the moment I can hardly stand up without being in a lot of pain and feel in very low spirits. I'm really confused as I felt I coped really well when things were hectic at the beginning but now that mum has had 4 chemos and the oncologist is pleased with her I'm struggling to cope. I thought about the doctors explanation that I was tense and realised that I am. I actually feel frightened. I know mum is doing well but also know it's going to come back and I suppose I'm worried about being lulled into a false sense of security and then being hit by an out of control train. When I should be happy that mum is doing so well and enjoying my time with her I am spending my time worrying about the bad things. When I talked it through with my GP I realised that when I wake up in the morning I'm aching all over. I'm not relaxed when I'm asleep and I have no control over this. It seems to be my subconscious that is the problem although it is now affecting my conscious thoughts. What can I do to relax? I can't do anything about it if I'm tensing up whilst I'm asleep. Anyone any ideas? Any suggestions of how I can get rid of the tension that's causing the aches and pains would be appreciated. The gp said the pills would deal with the muscle swelling/inflamation but that I was stuck with the tension. Surely not?!

February 27th 2010 - No chemo again!

2010-02-27T10:16:02Z

The district nurse took 6 attempts/needles to get mums bloods on Thursday. My mum felt sorry for her as the blood was going everywhere but where it should be! If it had been me I think I would have fainted as I'm not too good with needles but typical mum her concern was for the 'poor nurse!'.

Yesterday morning we go up to get ready for mums chemo. At 9am I breathed a sigh of relief as we had not received a phonecall saying mums blood count was low as we had last time wen they'd phoned at 8am. We had breakfast and were just putting on our coats to set off for chemo at 10.10am when the phone rang. Yes you guessed it, it was the chemo unit to say mums blood count was low and she couldn't have her chemo.

When mum came off of the phone she started to cry, something she's not done more than a couple of times since her diagnosis, previously about losing her hair. I felt totally inadequate as there was nothing I could do to make her feel better. She said she just felt fed up as her chemo was dragging on due to the treatment being delayed.

I left a message for Christine, mums CNS, and she phoned back in the afternoon when mum had gone back to bed for a sleep. She said mum needed to be assured that she was doing brilliantly with her treatment and that a lot of younger people only managed 4 of her regime. I know her oncologist told us at the outset she would have between 4 and 6 depending on how her body stood up to it but mum is determined that she will have all 6. Christine said that if mum couldn't have any more now that didn't mean she couldn't have any after a break but mum says she doesn't want that, she just wants to get it done. I don't think she's grasped that treatment could be more long term than she anticipates.

Anyway the plan is that mum will now have her 5th chemo next Friday assuming her bloods are ok. She sees her oncologist the following Thursday when maybe he'll suggest she doesn't have the 6th. If he does I don't know how she'll take it. I suggested she ring Christine and get her to explain but she says she doesn't need to as I've told her what she said but I know she's not convinced that what Christine said is right. I think she feels there must be something wrong because her blood count is not recovering within the 3 weeks.

If anyone reads this and has been in a similar situation as mum, can you post your experience so that I can relay it to mum. I feel that people having to have treatment delayed because of a low blood count is more common than mum thinks? Maybe if she could hear about others who've experienced this but gone on to have their treatment and been ok it might just help her through. She has been so positive so far and I want her to remain so as I feel it's been a contributing factor in her coping so well. She was very down yesterday.

February 23rd 2010 - Mum suffering bad back pain!

2010-02-23T17:51:53Z

My aunt and Uncle went home today and since they arrived last Thursday mum has appeared to be in good form. I say appeared because she has not gone for a sleep during the day and has stayed up well beyond her usual bed time. I did suggest on the first evening that she would struggle if she kept staying up late and didn't sleep at all inthe day but she said she was enjoying having them here and felt fine.

They set off home at 11am today and at lunch time mum sent me a text saying she was going to bed as she was really tired. I text back saying I wasn't surprised as I knew she would be really tired. She then rung to say not only was she tired but her back was in agony! She has suffered from lower back pain for years and, though, initially had pain in her lung area the docs had sorted out her pain meds and she has not been suffering pain. Whilst my aunt and uncle were here she insisted on doing the cooking etc. and had mentioned to me once or twice her back was sore but hadn't indicated that it was worse than normal. I told her she was doing too much and I didn't think it was cancer related but her lower back problem from previously.

Her district nurse came today so mum told her how much pain she was in. She told the nurse I had said I didn't think the pain was cancer related as it was not in her lung area and the nurse said the cancer can cause pain anywhere and told mum to step up her oramorph to every four hours and said they may have to step up her MST! I'm ot happy about this as she is not a cancer nurse and has no knowledge of mums previous medical history before her diagnosis.

Obviously I do not want mum to suffer pain of any description but I do feel she has the pain as a result of doing too much and needs to rest and take her current pain meds properly before they up her MST. She has also slept in my bed whilst my aunt and uncle were here as she wanted them to have her bed and I slept in the spare bed in our loft conversion above my bedroom. She is not used to my mattress and did say that she felt it was affecting her back but is now saying it is nothing to do with the mattress because the district nurse says......! This is a district nurse who is filling in for mums usual nurse who is on holiday.

Of course I questioned how the nurse could say it was related to mums cancer when she had no knowledge of mums medical history. Mums xrays show the cancer is shrinking so why would the back pain be increasing? Am I wrong? Anyone know? I'd appreciate anyone who has perhaps had a similar experience. I know I've upset mum because I was angry that she said she didn't need to rest at the weekend and was fine when she clearly wasn't! My aunt and uncle are used to mum going for a sleep and would not have bothered if she'd gone to bed for an hour or two whilst they were here. She was the life and soul whilst they were here and now that it's just me and her she's really exhausted, down and in pain! I'm really annoyed with her but shouldn't have had a go at her. I now feel really guilty for probably making her feel worse than she already did! She's now gone to bed for a sleep.

February 18th - Good news!

2010-02-18T11:17:16Z

We're just back from Dr Mehta, mums oncologist. He is delighted with how mum is doing and is happy for her to have the 5th and 6th chemo sessions. He says her xray looks great and has arranged for another ct scan when she has her final chemo so that he can decide on whether she should have RT. Also to decide on whether it should be to head, chest or both. Another boost for mum, she was delighted although the downside is she says she is doing well even though she's smoking.

I've tried to convince her that she might do even better if he stopped but after 56 years of smoking I think it might be a step too far for her to stop. And ofcourse I am still smoking so can't say a lot! I'm reading Allen Carrs book easyway to stop smoking and may even invest in going to one of his clinics. If it works the £175 will be well worth it. Don't know that it would work for mum as she already has cancer and it seems to focus on stopping before you get cancer as the next cig could be the one that does it. We'll see.

February 17th - Midweek madness!

2010-02-17T21:42:51Z

To let you understand I think my mum has OCD when it comes to cleaning the house. That was fine when she could do it herself but now it's down to me. Since I broke up for half term on Thursday I have cleaned everything, and I mean everything, that it's possible to clean in the house. She has followed me round checking I've done it properly and not cut any corners, as if!!! Today it was 'necessary' to gut mums room including changing the bedding and turning the mattress.

Mum said she would help and I told her not to bother. She then said she would just come upstairs and keep me company and I told her to stay where she was. I went up to start and I heard the buzz of her stairlift as she followed me up. I set to asking her to sit down out of the way. This she did until I was turning the mattress when she once again offered her help. She wouldn't take no for an answer and headed to the other side of the bed so I picked up the mattress and flicked it over quickly before she could get there.

Disappointed she turned to head back to her observation post when she tripped over the end of the bed and shot into the air only just managing to steady herself and avoid crashing into the wardrobe. As you can imagine I was not happy and began to rant and rave about the various bones she might have broken and didn't we have enough to cope with without having to deal with broken legs etc!

Mum started to laugh and how she giggled! The more I said it was no laughing matter the more she giggled! In the end I found myself giggling too! At times she drives me to distraction as she is so stubborn but I suppose her grit, determination and sense of humour are what have helped her to stay so strong and cope so well with her illness.

The house is now gleaming, no broken bones, my aunt and uncle arrive tomorrow and I got my new car. Everything is good so let's hope the oncologist has more good news for us tomorrow when he sees her!

February 14tth - Weekly blog No. 2!

2010-02-16T19:45:20Z

Let me think what has happened this week!? Well I suppose it started with the worry over Peter having his brain tumour removed on Monday. Mum having had her chemo on Friday was totally wiped out and slept all day and I got a phonecall in the evening about my new car but, as I missed it, had to wait to Tuesday to find out what it was about.

Tuesday morning the garage phoned to say that the car I had put a deposit on had some damage. Disappointed, I told the guy I didn't want it but he said he'd found an almost identical one except that it had leather seats and bluetooth and as he'd let me down he'd do it at the same price. Things seem to be on the up! Mum slept less on Tuesday and when I got home from work seemed quite bright. Peter was amazingly well after his op and was up and walking about.

On Wednesday Peter got home from hospital. Isn't that amazing considering the initial prognosis? Mum was very tired again on Wednesday and slept a lot whlst I was at work, although she was up and about in time to have her her cuppa with Gillian, myself and the kids at 4pm.

Thursday was my last day before half term and I was looking forward to the rest. Peter was continuing to do well and mum, although still tired, was in good spirits. Friday and Saturday were more of the same with me flitting between running round doing housework, shopping and chilling out.

That brings us to today. I've had quite a lazy day although I've cleaned the kitchen window. I cleaned the lounge and dining room windows yesterday but ran out of steam before I got to the kitchen. Mum insisted she do the ironing, 'It's just a few t-shirts and a duvet cover' she said and set to with energy. She had a wee bit of back pain afterwards but, as she pointed out, she used to get that before the cancer. We also had Thomas and Freya, my godchildren, for an hour or so. When they're at grandmas next door they often pop in to see us. We thoroughly enjoyed their company. freya is 4 and Thomas is 9 and they never cease to make us smile. Although mum is still tired she is definitely picking up a wee bit more each day and I'm hoping we can have one or two nice days out next week, especially if I get my new car. My aunt and uncle are coming down on Thursday for a few days so I daresay we'll be hitting boundary mill, maybe even Cheshire oaks and finding some nice wee pubs for lunch.

Mum sees the oncologist on Thursday so I pray that everything is still going well with her chemo and that her x-ray shows more improvement as that will give her a boost and help her to enjoy her time with her brother and sister-in-law. Until next week!

February 7th 2010 - Mum wiped out! Peter having brain op tomorrow!

2010-02-07T18:23:28Z

Mum had her chemo on Friday as her neutrophils had come back up. She had a good day yesterday but by last night I could see the main side effect of extreme tiredness was beginning to set in. She is wiped out today and has slept a lot, getting up to eat and going back to bed. However, she has eaten well today and enjoyed her food. She normally feels a bit nauseous on the Sunday after chemo but so far so good today. She did have to change her bed this afternoon as it was wet through with sweat. Christine, her CNS, says this is a symptom of her condition that has to be endured and that there is nothing can be done with regards to it so she'll just have to put up with it.

I was annoyed with her as she changed the bed whilst I was out and was exhausted when I got back. I pointed out that she should have got into my bed and left it for me to change her sheets when I got home. She said that my bed would then have got wet and she did't want to do this but since she had not gone back to bed when I got in she could have left it. What can you do?!

My friends dad, who has primary lung and secondary brain cancer, is due to have brain surgery tomorrow to remove the tumour. Initially they said there was nothing to be done and we're not sure why they've changed their mind but we see it as a positive and pray it is successful. Please keep Peter in your thoughts and prayers. That's all for this week folks!!

February 1st 2010 - Moving to weekly blog!

2010-02-01T19:26:45Z

Initially I blogged every day and have kept this up since mum was diagnosed. At the beginning there was loads going on with mum like getting a wheelchair, results, losing her hair, first ever chemo and side effects, panics over high temp etc. etc. etc. etc. 3 months down the line things have stabilised a bit and I now find that I no longer need the therapeutic qualities of my daily blog!

So after today I will blog once a week. I feel that this is real progress in terms of how mum has coped with her cancer and everything she has had to deal with. At the moment she is doing pretty well although she did have her setback on Friday when she couldn't have her chemo due to her low blood count. I am also dealing with mums situation better at the moment as I've become more used to what happens and am, therefore, less panicky! I know there will come a time when I find myself blogging daily again but at the moment feel that I can cope with just putting things down on paper once a week.

A good day!

January 31st 2010 - A nice relaxing day!

2010-01-31T22:23:31Z

Mum was very tired after the wedding yesterday and slept until around 11.30am this morning. For some reason I woke up at 4am and then again at 6am thinking the phone was ringing, which it wasn't. I actually went down and dialled 1471 as I was convinced something was wrong and someone was ringing me. Then I could have sworn I heard my friend Gillian from next door shouting my name when I had just got back into bed. Very wierd! I didn't go back to sleep and read a book until 8am when I put the TV on to watch Andy Murray. I remember the match starting and then woke up in time to see the last couple of points! I was hoping to see some history in the making but as he was well and truly beaten at least I didn't miss much. So as it turned out I also slept until very late, something I don't usually do.

Apart from doing a bit of washing mum and I just watched some TV and took it easy for the rest of the day. Mum has recovered from the disappointment of not getting her chemo on Friday and has been in good form all day. Although she slept late this morning she has had no need to return to bed today so she had obviously had a good nights rest last night.

January 30th 2010 - Lovely wedding!

2010-01-30T16:05:09Z

We've just got back from my friends sisters wedding. It should have been on March 13th but because her dad has been diagnosed with terminal cancer (no treatment) she wanted to make sure he was well enough to walk her down the aisle. We were all up early this morning as the bride and bridesmaids were getting ready in my friends house whilst I had the boys (Kieran 17, Thomas 9 and Joseph 7) getting ready in my house. So by 8am mum and I had had our showers and I was making tea and toast for the boys and then shipping them off into the shower one after the other. It was pandemonium as everything had been brought forward but I must say everyone pulled out all the stops and the dresses were only finished at 7.30pm last night.

We couldn't believe what a beautiful day it was, absolutely freezing but glorious sunshine, and it's still shining now. The church was beautiful, the priest was lovely and very funny and everything went off without a hitch. It was a really lovely wedding and was enjoyed by everyone. Afterwards we went to a church hall for a lancashire hot pot lunch, there will still be the proper reception in March at a posh hotel but this was the best that could be organised at short notice. Peter, the brides dad, was in good spirits and was beaming as he took his only daughter down the aisle. He seems in good health at the moment and, like with my mum, it is hard to believe there is anything wrong with him. Mum really enjoyed it but has gone to bed for a sleep now as we were up early and she was beginning to flag by 3pm.

It was a lovely start to the weekend and mum and I will just chill tonight and tomorrow.

January 29th 2010 - Blood count low so no chemo!

2010-01-29T11:01:45Z

I got a phonecall from mums chemo nurse this morning to say mum couldn't have her chemo. Seemingly her neutrophyls are low, not sure if that's right?! Anyway she now has to have her bloods done again next Thursday and hopefully will have her chemo on Friday. They have assured us this is quite common and that it's nothing to worry about but mum is upset about it, as I am. She seems so well that we never thought for a minute there would be a problem. This delay will probably put paid to our trip to London at half term because mum will probably be too tired and her immune system will be at it's lowest now. Very disappointing but hey ho!

January 28th 2010 - Dr Mehta still pleased!

2010-01-28T19:48:47Z

Dr Mehta is still pleased with how mum seems to be doing on the chemo. She asked about the RT and we had a wee bit of a sticky moment because originally he said sh would have 5 to her head and 5 to her chest. He said it was a possibility but the decision would be made when mum finished her chemo. He went on to say that the problem was that with people mums age it could really knock them for six for 2 or 3 months and although we don't know the prognosis 2 or 3 months of good quality time with her family may be better that 2 to 3 months of extreme tiredness and bad side effects.

Mum took it that he was saying because she's 74 it wasn't worth doing it whereasif she'd been younger he would have given it a go. I don't think that was what he was saying at all but am not quite sure what he was saying. I got the impression he was saying if you've not got long you might as well enjoy the time you have. That was scary and I think I may contact mums CNS, Christine, and ask for some clarification. I would have been happier if he had just said mum was doing so well with the chemo that he didn't think it would be necessary to give her the RT to her head. That would have made her even more positive in her outlook which I feel is a big part of how well she is doing. It's that PMA thing!

We know it's terminal but mum has told me not to use that word as it makes her feel she is going to die tomorrow. So she tells people she knows it can't be cured but she's feeling well at the moment and the chemo is doing it's job. She is so positive and I don't want any niggling doubts to creep in. I tried to explain that the idea of the RT to the brain was in case it had spread there but that maybe they felt now that it hadn't. I hope that's what it is as he seemed to indicate that he would only do it if there was cancer in her brain and not as a sort of 'belt and braces' as he had first planned.

Anyway I've told her we have got to be guided by him as he is the expert who is dealing with this on a daily basis. She agrees with that. I think she was just worried it was an age thing and because she feels strong she thinks she could cope with the side effects just as well as a younger person. To be honest I think she could but I don't want her to have it if she doesn't need it as I've read about the tiredness, horrific headaches, lack of ability to sleep, memory loss (which he mentioned) etc etc. So we'll see what happens at the end of her chemo. Number 4 of 6 tomorrow.

January 27th 2010 - Oncologist tomorrow!

2010-01-27T22:33:08Z

Mum has her next appointment with Dr Mehta tomorrow morning and then we'll nip up to the chemo ward for mum to have her bloods done before her chemo on Friday. I think Dr Mehta will be quite pleased with how she's doing although he told her not to bother having an X-ray, like she normally has, this time so he won't really know whether there is any more shrinkage. He said last time he was happy enough that the treatment was working and, therefore, there was no need to have another x-ray. So I would think it'll just be a general chat to ask how she feels she is.

I'm dreading her having her chemo on Friday because she has been so well for almost 2 weeks and I know she will not be well by Saturday evening and that she'll be low for about 10 days. I just hope she feels well enough to enjoy the wedding on Saturday.

I am also on a mission hen I am at the hospital tomorrow. My friends son Kieran is hoping to study medicine when he finishes his A levels and has been told he needs to gain some work experience so he wants me to find out if he could do any voluntary work at the hospital. Anyone know anything about this? Is it possible? I'll ask anyway, nothing ventured, nothing gained.