My beautiful mom has sclc...

[Hope1953]

Hi, can anyone give me anything positive to cling on to regarding this horrid situation that we are in? Mom was diagnosed with sclc and has just started her first round of chemo last Tuesday....the sickness has knocked her about.....apparently this sclc cannot be cured and is also aggressive......please I'm just looking for a glimmer of hope, my world is falling apart!! Best wishes to you all xxxx

[didi70]

Hello,

I know how you must be feeling. My dad had nsclc which had metatsized. Has your mum's lung cancer spread anywhere else? X

[Hope1953]

Hello, thanks for the reply, you'll have to bear with my my knowledge is still quite limited!! They have told us that it's in the lymph glands and both lungs. Nothing has been said about anywhere else other than a mention about radiotherapy to the brain as this cancer tents to spread to that area....would it be other scans and tests to see if it had spread? No other tests have been offered to us, we started chemo on Tuesday, it's a 21 day cycle......x

[tilstongal]

Hi, this is such a horrible shock to you and your mum. I was diagnosed with nsclc in May and to be honest it was such a shock I could barely function for several months. You must see your GP and ask for a counsellor. She will help your mum overcome her shock and put her in a positive mindset. It is so important to be positive and to be thinking in a positive way, never allow a negative in. You must help her with this - always talk about the future positively - when you're feeling better we'll do such and such. When this round of chemo is over you will feel so much better.

Your mum's condition may not be curable but chemo will shrink the tumours and give you mum possibly years of life. I know chemo is awful but they would not give her that if there was no hope. There is hope, I am not misleading you, there really is.

Macmillan nurses are very good too. They are not just for the dying (as I thought) but for people who will improve after treatment. If one has not been allocated to your mum again see your GP or consultant and ask for one. There is a lot of literature so read it and arm your mum with facts so you can ask sensible questions when you see the consultant.

It is so important that she doesn't become an emotional punch bag she has to fight - and your role here is crucial! Help her, Go Girl!

I really hope this helps and I am speaking from experience. If I can help you more please don't hesitate to message me.

I will be thinking of you and send love and strengthening thoughts.

Xxxx

[Hope1953]

Oh my gosh Thankyou so much for your reply, it means so much, I don't know why it does but it does. I am a great believer in medicine as I too have had my own issues ( large bowel removed due to Crohn's disease ) and I'm doing my best to keep her looking forward to things, Xmas etc... Im sorry for your diagnosis too and I hope your treatment is doing it's job x like you said it's such a big shock and learning to deal with seems impossible at the moment, I suppose like anything it takes time......once again Thankyou...... Again I'm crying, all I seem to do at the moment xxxx

[LorraineD Partner Roy Castle]

Hope

sorry to hear about your mum's diagnosis. I hope she is coping okay with the chemotherapy and you are getting the support you need. You and your mum might find our "Answering your questions pack" useful if you have not seen it. Copies are available on our website or by calling 0333 323 7200 option 2.

Best wishes

Lorraine

on behalf of the Information & Support team

[tilstongal]

Hi Hope 1953,

How are you and your mum doing? I have been thinking of you and wondering how it's going?

I hope you now have more info and are learning to fight it.

Do let me know,

Sending strengthening thoughts and love,

Tilstongal

[Hope1953]

Hi tilsongal

Mom has had her first chemo, she starts her second lot on the 16th this month....the chemo has left her very tired and from the day she had it suffered whit sickness which lasted about four days and nights (was awful) stopped now thankgod! Other than that shes ok, however I'm aware that her immune system is non existent at the moment.....we are all keeping positive around her, and just trying to get our heads around it.....she's doing amazing, and never ceases to amaze me with her ability to always put others first, mainly me...how lucky I feel to have an amazing mom.......Thankyou so much for asking, means a lot.....How about you? Where are you regarding treatment? I'm hoping and wishing you well xx

[tilstongal in reply to Hope1953]

Hi Hope 1953,

Funny this site used to tell you when someone asked you a question but no longer does so - so sorry not to get back to you sooner.

I am pleased that your Mum has started treatment. Regarding the sickness she should tell her team as they have quite a lot that they can do about it, but only if they're told. My team are keen not to let it start as it is more difficult to stop it than to avoid it in the first place. As a general rule tell your team of anything that is nasty that's going on.

Where abouts in the country are you? Is it a dedicated unit in the hospital or just a general hosp?

Your Mum should rest a lot - listen to her body - if it says sleep - that's what you should do. Is she going to have radiotherapy too? If so come back to me and I will let you have my experience.

I have had 20 radiotherapies in 26 days, and 12 chemo's in the same period. A months break and now adjuvant chemo's cistplatin and vinrelbine together every 8 days for a month. I started today and it's wiped me out. It's 3.30am and it's the first time I've not been dozing since 9.30 this morning when they started to infuse me.

Look it's all horrible, I would be misleading you to say otherwise, but it is a means to an end and my mantra is 'It is to make me better'. That is at the forefront of my mind all the time. I'm not superwoman and I have my wobbles but keep your mantra in your head and you'll get through. I'm speaking as if it's you but apply it to your Mum. You are a great daughter (I have terrific sons) and you can be strong for her - always positive - 'you'll soon start feeling better from this'. 'Go to bed, we'll cope here'. Small inviting meals. A lot of fluid.

She's very frightened - I know I was and I still am to an extent. Read all the blurb from Macmillan nurses, and brochures in your hospital. Stay away from websites (this ones ok) as they can be very scary and are not always accurate. Feed her the info in bite size chunks and keep it positive.

Lots of luck and do please come back to me if you feel I can help more.

Lots of strengenthing thoughts and love.

Tilstongal x

[Hope1953]

Hi tilsongal, sorry for late reply.....wow that's a lot of treatment! I'm sure your exhausted both mentally and physically, bless you I hope your as well as you can be x we are in the midlands, live in a small village called armitage ( where they make the toilets, armitage shanks/ware ) it's just outside lichfield. Moms under Stafford hospital which has had a lot of negative media of late, so I'm hoping they are on top form as the whole country are keeping a watchful eye over them!

Unfortunately mom developed a urine infection which is why I've been delayed in my response to you, she was much better and a recent dip test gave the all clear, bless her she was due to start her next cycle tomarrow but at 6 o'clock tonight she received a vague phone call to say they weren't going ahead as her bloods are not good, I can't say for sure but at the moment I believe the chemo to have affect her kidneys, but we will only find out tomarrow, mom is devastated...I've done my best to try n reassure her as best as I can.........

Forgive my ignorance but can chemo be given at the same time as radiotherapy??? Mom has to have radiotherapy at the end of 3 lots of chemo, to try to stop it spreading to brain, I'm so sorry for asking awkward questions it's just that the oncologist told us that mom couldn't have them both together..........

How blessed you are to have loving sons, family is everything to me, I have 3 children, eldest boy,16 then a girl,14 then my youngest a boy of 5, they certainly keep me on my toes! Never a dull moment in my house, I love it!!

I am eternally greatful for your responses and am too sending you healing and positive thoughts

Bless you

Hope 1953 x

[tilstongal]

Hi Hope 1953,

Sorry not to get back to you sooner but I've been in and out of hospital with sickness caused by chemo that simply wouldn't stop. 9 days then a break of 2 ays then off again.....it was awful. It seems a bit better now.

I asked where you were in the county because if you are near a centre of excellence you have a right to go wherever you want, but I don't think you are and if you are then you must bear in mind travelling time as sometimes you can be going quite frequently.

Yes you can have radio and chemo together but you must be very well to do so and to be honest it doesn't sound as if your mum is - this will be why the oncologist said she couldn't have it together.

You MUST get a Macmillan nurse. Ring the unit that's dealing with you and ask for one - don't be put off. If you have a good GP ask for their help too in getting one. I am distressed that you have been left to cope all on your own. A Mac nurse will be able to help with the symptoms and answer your questions. It is your right to get one - fight!

I am also worried that your health will start to suffer and that would be a disaster, so take great care of yourself, pace yourself and what doesn't need doing now - leave it. I can't remember if mum lives with you or not but whichever way it'll take its toll so be very careful to get adequate rest.

Once more this site didn't tell me you'd replied to my last chat, so if you reply I will try to look frequently to get back to you sooner. I might have a look in settings too.

Good luck, take care. Lots of strengthening thoughts and positive vibes.

Love

Tilstongal

[Hope1953]

Hi tilsongal

I'm sorry to read that you have been so unwell on your treatment but pleased you are feeling a little better, how brave you must be, I have a biological infusion of infliximab every month and daily meds of azathioprine and steroids for my Crohn's disease, these knock me about so I'm in awe if how you cope with the side effects of chemo, your an inspiration.......

Mom didn't have her chemo last week it turned out that her white blood cells were to low, thankfully they came up and she started her second cycle of chemo on Tuesday, she seems a lot better this time round due to them prescribing a different anti sickness, for that I'm so greatful.

A macmillion nurse has been to see mom recently, I know mom had a chat to her and I believed this helped mom as she could talk freely to her, I do think mom holds back when talking to me as she doesn't want to upset me, bless her....I feel the same when I'm talking to mom, it's strange how we are all desperate not to upset each other and end up talking to strangers easier than each other.....I wonder if this is normal? Anyway I know that the macmillion nurse has booked future visits.....

I also don't get notifications of messages, please don't worry about posting, your undertaking massive amounts of meds and I find it amazing that your posting at all at the moment, like I said inspirational........throughout this horrendous time shines human kindness, it's quite overwhelming.....

If I remember correctly your having chemo for 8 days, you've now finished this? What's next for you? Will they re scan? I really do hope all is going to plan and you receive the best news....

Sending you healthy wishes, take care xxx

Hope1953

[tilstongal]

Oh Hope 1953, in this terrible time all we can do is support each other and that is never ever an effort.

I think your mum will find it easier to express her fears to the Mac nurse than to you. No matter what, you are her daughter and maybe she thinks that some of the things she says would distress you, and she won't want to do that. You too must find someone to talk to - approach Macmillian and ask if the have a councillor for carers, or maybe your doc will be able to help. You must protect yourself and your health as a matter of the utmost importance, you are no good to your Mum if you are too ill to cope!

I do not feel like an inspiration - But I have a small band of friends whom I told about my illness ( I didn't want it all round the village) and they have been a wonderful support to me, so I know how it helps. I am now at the stage of having had most of my treatment (2 more chemo's to go) and feel that maybe I can help another person through this awful time by just being there for youand your being able to say whatever you wish to me freely. I know what a help it is.

So Hope1953 lean on me and I'll help as much as I can. Strangers are always easier - they don't have the family baggage!

All the best for Mums next chemo. I'll be thinking of you.

Tilstongal x x

[Hope1953]

Hi tilsongal

I hope you are keeping well? It's been some time since the last message, unfortunately I've been unwell and had to spend a week in hospital, I guess the stress got to me and my Crohn's disease, I'm now on steroids so feeling lots better for time being.....mom is doing ok although again her chemo was put back due to her bloods being low, hopefully starts Thursday, however she has had a ct scan which has shown improvement on the lungs...... I am concerned with the headaches mom is suffering from, I guess we should ask for an MRI scan but at the moment she's on a high following her ct scan, I really don't want to shatter this......how is your plan going? Last time we messaged you had got 2more chemos to go.......

I really hope your well

Hope1953 x

[Hope1953]

Hi tilsongal

It's been some time since I last heard from you, I do hope all is well with yourself and you were able to enjoy Christmas with your family....

Mom starts her radiotherapy tomorrow, how is your treatment going?

Hope to hear from you

Hope1953 x