This is all new to me, and I don't know what to think! Help.

cinnamon · Regular Joined: 02 Nov 2009 Posts: 22

aisha1,
Keep us updated. Seems like there's a lot to learn here from your experiences.

Hope today is a good one for you! I can tell that you have a very strong spirit. My hat is off to ya!

aisha1

Hi people!

Today I feel better. I'm still not myself, but I haven't had any cold sweats. I had a letter through from the hospital for a gynacology appointment about my ovaries, and I have to go on Monday to see them. Hoping that I don't have to go through embarrassing examination rituals, but I guess it has to be done if requested. I still have abdominal pain every few days, and I need to find out why this cyst has grown.

I'm going to say something that I am aware sounds very selfish, and sounds like I resent my kids - but I don't.

I think most of the reason I am beginning to feel so bad is because everyone else that is going, or has gone through this has BEEN or is BEING looked after by someone else. In my case, I am the patient, but I am also doing the looking after. I still have 2 children to see to, and no one to look after me.

I have a sister, and she helps out when she can, but she works 6 days a week (2 of those are late into the evening) and she has helped me a lot with money. My Dad takes my kids to school most mornings, but he has a lot in his own life that he has to take care of as well. I have a friend who cares about me a lot, and visits me in hospital most times, and we go out to eat at times.

The fact still remains that I have 2 kids that I am the carer of. While everyone else has a chance to fully relax, and be waited on, it is the opposite for me. The nurses seem to think that I can go home and relax. Yesterday I had to leave the hospital, collect the kids from school, and then go back (with both kids) for an x-ray. They have always seen me while the kids are at school, and so it was a reality check for them when I had to turn up for my x-ray with both kids.

They rely on me, and I still have to wake up in the morning for them. They wake up at around 7. So whether I like it or not - whether I have slept well or not - I am GETTING UP! Breakfast, school uniform, "brush your teeth!", PE kit, packed lunches and books all have to be in order before they even leave when my dad arrives to take them.

I know this is long, so I will try and keep it quick....... even if I do the minimum amount of housework, I still have to clean the bedding for 3 beds. My kids still need to be bathed, I still need to do shopping, I still have bills to pay, bank to phone/attend, JOB CENTRE, rent, letters to write/post, kids need to do their homework (I have to make sure they do it properly), we all need clean towels, they soak the floor when they have a bath (needs mopping)....the list goes on.

So, even if I have a bad night, or an uncomfortable day - life goes on, and I think that most people don't realise how nice it is to have someone close to them that looks after them - instead of being the person doing the looking after. My kids quarrel, and they fight so I have to constantly be the referee between them as well, which is exhausting in itself. I always have to make sure that they are getting on well. If you try saying "Be good, please", "Give that back and stop being silly", "Don't hit your sister", "Stop annoying him on purpose", "Behave yourself, there will be no treats for you", "Not should of, it's should have"............all the time. It is tiring in itself.

So, I guess some people may think that I am taking the ABVD badly. I don't think it's the ABVD, I think it's that I don't have a chance to let my body rest or to at least let my mind rest. I'm starting to feel more and more under pressure. I want to just say "f*^$ it all" and go to sleep for the next 3 months but this is life, and I have to live it, whether I'm tired or not, I have NO CHOICE. Sick or not, I have NO CHOICE. Even if I end up in hospital, I'm scared that my kids will be split up, and go to separate dad's, and my daughter's dad may well apply for custody on the grounds that I am too sick to look after her - messing things up even more. I will have a broken soul and broken family if that happens which is much worse than a broken chemo regime.

I'm stuck in a bad spot and can't even affors to be ill because this world contains some snakes that are just waiting for you to weaken.
_________________
Diagnosed Hodgkins lymphoma, nodular sclerosis, grade 2.
Stage II/IIIa.
Chemotherapy ABVD started August 2009.
Still looking young Wink

joepet · Senior User Joined: 18 Dec 2008 Posts: 288 Location: Japan

Hi Aisha,

I'm so sorry that you have such a poisonous relationship with your ex's that at a time like this, you must think of them as enemies instead of sources of support. Or perhaps that is just your view of the situation? Do either of them even know of your illness at this point?

Given the personality that you have shown of yourself on this forum, I find it incredible that, outside of your sister, none of your other acquiantances have stepped up to the plate to help you out in a time like this. It certainly makes me more grateful from the support that I was fortunate enough to have at my disposal.

I remember from Michael Moore's film "Sicko" that France actually had government workers who would come to people's house to help clean and cook for people with children. No such luck in GB?

Well, besides my eternal sympathy and admiration, the only thing I have to offer is that you still have plenty of room left to lower your standards. If the kids fight, then let 'em fight! Unless they are packing heat or reach for the steak knives, I doubt they will hurt each other too badly...maybe if they suffer the consequences of their actions they will learn to think twice about them? You can make breakfast and lunches before going to bed the night before, and surely your dad can make sure the kids are dressed and have their stuff ready when he comes to take them to school? And of course, write less often here if it helps...we won't think any less of you!

I guess the other thing to say is to try to just take things one day at a time. I usually freaked myself out when I tried to consider the totality of what lied ahead of me, but each day I was somehow able to get through.

I pray that, somehow, you will be able to get through.
_________________
Age 37 (36 at diagnosis)
Diffuse Large B cell Lymphoma
Stage 1AE (localized in colon)
Began six cycles of R chop 21 3rd Dec 2008
Finished R chop 21 Apr 2009
Complete remission as of May 2009

havefaith

Hi aisha,

I am so sad to hear about your misery every day. the worst thing in life is the feeling of lonelyness. Don't you have other brothers ans sisters , who can come for a wile to help you with the kids.

In canada we have some volunters who can come to your house and give you some help but you have to apply and stuff like that (i hate paperwork)..

you did have last time a great news about your cancer shrinking, and now you feel depresse. life is one day you smile, 4 others you cry and is goon.. but never forget the beautiful days are coming, this life suck must of the time, wait for god to give us paradise only there we gonna have the peace of mind.

And i agree with joepet about the kids.

take care dear. god have mercy on you.
_________________
28 y f
thyroid cancer (28-09-09)

thyrodoctomy total+ sternotomy median 2009

what is worth the price always worth the fight.
stay strong and live strong.

ChemoMan

Hi Aisha

Chin up gurl.....is this the steroids talking? Gotta watch them mood swings.

First off don't worry about whining a bit that is what this forum is for. ABVD is tougher than R CHOP so don't feel bad about feeling it and having a bit of a spray here. I think your point about not getting enough rest is a valid one and yes the kids behaviour will impact on your ability to rest up. I get what joepet said about relaxing a bit about their behaviour but I realise that trying to get some peace of mind when they are at each other is pretty well impossible. Maybe an approach to someone to help out might be the best thing to do. This is the most important fight of your life and unless you approach this right you are going to find it hard to win and if you don't win then where will the kids be ? Ask yourself who will look after them if you are not around and if you come up with someone then maybe you could approach them to take them off your hands for a little while. One night a week would give you 2 days off and this could make all the difference especially during chemo days. 2 nights a week would even be better. You are the one with cancer and you need to think about yourself a bit during this. So do yourself a favour and start being a little bit more selfish, now is the time, you can make up for it when you get better.

The other thing is to be honest with those around you. When people ask how you are going tell them the truth, that its bloody hard going and you feel like crap. I have a feeling that you are being a bit stoic and trying to put a brave face on things, Just tell the truth and that is this is a hard slog and the strain is almost unbearable. Maybe then people will jump in and offer some real help. Sounds like you have some people around you that would do this if they knew how hard it was.

Anyway I hope things get a little easier, as always keep us posted and good luck with getting some R and R.

Cheers
_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... Don't forget Rule number 1

aisha1

I am going to reply to all of you, one by one. You have all helped me so much and need a proper reply.

Joepet, both of my Ex's know my situation. My daughter's dad was told when I first had my biopsy. I told him that he needs to be aware of what is going on etc etc. As soon as I said "I'm really going to get sick, so please - if I pay for a club for her to go to during school holidays, then make sure you take her, because it will be a waste of money if she doesn't turn up", he told me "Look, I don't give a shit about your cancer, handle your business". So that's how this all started off! He has recently lost a lot of money in the economic downturn (he was very well off before) and has lost at least 54 homes that he was building in a project here. He is now just annoyed all the time, and although still well off, he is a bit mad. Recently, he has been a bit nicer, it's usually when his girlfriend is not around. I think he feels like he has to be my opposition when she is there. The weird thing is he keeps telling me about his friend that has just died from prostate cancer, and says that he knows 4 close people that have all died from cancer in the last year. He said 3 of them were young-ish. He says it in a way that makes me think he wants me to panic. When I tell him, "Yeah, but my cancer is different, it's easier to treat" he tells me that he wants me to tell him if I get bad. I know what he's up to. His Mum, who is THE ultimate bitch has always considered my daughter as some sort of trophy that should be taken to prove who the better family is. She's twisted.

The other dad, my son's dad hasn't even seen him for 2 months. He lives about 10 minutes walk from my house, but hasn't bothered to even visit him. My son goes to his paternal grandparents on the weekend. You would think that my ex would go to his own parent's house on weekends for a few hours to see his son (he is only 4 minutes walk from them) but he hasn't bothered to do that either. He is a total waste of oxygen. I gave up on that one a long time ago. There is no chance that he will try and take my son from me so that's a bonus! Laughing

The other thing is in London, everyone wants to help, but they all have their own lives and it is a fast paced environment. You queue for ages in the supermarket, and when you get out it's rush for the bus stop, get on the bus because if it is too packed, you have to wait for another one. It is becomming like survival of the fittest here, and I have noticed that more and more since being sick. Even if people offer to help, it is offered with no real weight behind it, because they know that in reality, if I asked for it, they wouldn't be able to do it. Everyone gets home from work at 6:30 or 7:00. They still have to eat, do stuff for their kids/husband/house and so when would they come and see me? Maybe I'll get a midnight visit! Laughing

I just take their offers with a pinch of salt because I know that it will not materialise. I could however, see if there is someone that my chemo nurse could point me in the direction of. I remember that my mum used to have someone come round every so often. That would be helpful.

Oh man, this is long again! Anyway, I'm scared that if I let my guard down with the kids, or let the boundaries go, they will abuse it even when I am better. They will be used to fighting with each other and I don't want them to become like rogue children that I have lost touch with, even when I am better so I am trying hard to retain the same boundaries with them. This, I admit is exhausting and I am the only one that can do it. No one else can. My sister is too soft, and my dad thinks it's funny for them to do naughty stuff (typical grandad mentality) and so I have to keep them in check. My dad helped to get them ready for school this morning, he came early so that is strange that you suggested that, and it happened! I still needed to be up and telling them what to do though. Rolling Eyes

That was a help to tell you the truth, and now the kids are gone for the weekend to their prospective paternal sides. I think I can have a break.

HaveFaith, I think I have answered most of your post in Joepet's reply, but I only have one sister, and she works 6 days a week. My dad is trying to block out the fact that I am sick and I don't blame him really. It would be awful if I knew that one of my kids had cancer. When I first told him, he was acting strange. He still acts strange even now, and I took him with me to the hospital once, when I had chemo but he kept on saying that he was going outside for a cigarette, then he'd come back, then say "I'm going to get a sandwich", then come back, sit for 2 minutes and then say "I'm going to get a paper". He did it until I had my canula taken out and then he said "Ok love, that's that, let's go now yeah?". He is trying to be brave and act as if nothing has changed. At first I thought that he didn't care about it much, but I have noticed that he just can't really take it. He just wants short answers about how I am, and gets uncomfortable when I go into depth about anything, and so I just have to do things the way he wants, and give short answers or weigh heavily on the positive things like the PET scan. That seems to be helping. My sister also has his attitude a bit. They both like to keep their head in the sand. I am the one that usually keeps the whole family together and I am certainly the strongest, and so now that I am weaker, they don't know what to do really. Thanks for your insight though. x

ChemoMan, well..........I've taken up a good half of your day already! You must be reading this thinking "Oh man, hurry up and get to my bit!" Laughing

I am beginning to be honest with people. I used to put a brave face on at first, and it wasn't just a face, I actually felt ok, and the effects were easier to deal with. Recently I have told people that I am not well at all, but the trouble is people are judging me from the outwardly appearance that I have, and to tell you the truth, I look ok. More than ok, and so they can't fathom why I would tel them I am sick. I have put on wieght and everyone thinks that it is an indication that I am resting or eating well, or that I am just not sick. They have an idea that cancer patients are all skinny, dishevelled and grey. That is not the case with me, and so I'm not sure if people understand. Or believe me.

I'm going to rest this weekend. Lastnight I took painkillers to get rid of the pain in my abdomen and they worked in about 15 minutes. What a relief that was. Had some very strange dreams, but I'm feeling like today may be a better day. I'll take more ibuprofen when I need it. I didn't want to give my kidneys anymore to have to deal with, but hey!

Thanks people for everything. I like writing here, because I can vent, AND I have the added experience of people who are in the smae boat and understand! Sorry for the long posts.
_________________
Diagnosed Hodgkins lymphoma, nodular sclerosis, grade 2.
Stage II/IIIa.
Chemotherapy ABVD started August 2009.
Still looking young Wink

cinnamon · Regular Joined: 02 Nov 2009 Posts: 22

aisha1,
You have every right to feel selfish and be mad as hell. I get that. I really do.

Just a thought, but do they have anything like the United States has, like a cancer institute or anything like that where they have volunteers that go out and help people?

Yep, you're life is hectic and then all of this comes about. You are putting up a fight in more ways than one. Hang in there though. From reading your posts on here I can tell that you are just tough as nails! I admire you for that.

Take the weekend and rest, as you said you would. The world will still be here on Monday when the weekend is over.

You are a tough character! Hang in there! When you come out on the other side of all of this thing, you'll be tougher than ever!

ChemoMan

Hi aisha1

I never get tired reading your posts no matter how long they are Very Happy

Its like reading a good short story Laughing

Keep at your support network to help you get some time away from the kids especially around chemo time. Play with their minds abit and tweak their guilt into supporting you some more. Im sure I dont have to give you any pointers other than what I have already said.

keep posting and don't worry about sounding like a whinger, we have all been in that boat and we all know how it feels, so let it rip whenever you feel like it.

As I always say never lose that ability to have a laugh every now and then and you should be fine. Don't ever believe that rubbish you hear from amateurs who say you must have a positive attitude because it is not true and there are studies to back this up.

Cheers Smile

_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... Don't forget Rule number 1

havefaith

Hi aisha,

you realy should write a diary calle: cancer mother strugle.

is so bad that your exs are that selfish, i wonder how you choose them. defenetly love is blind. when i told my dad he too still act strange, cause he lost my mum when she was 37 of a brain stroke. but for your dad i get it he is living the same story again, he try to stay far but he can't, i am feeling so sorry for him.

talking about selfish people, few days ago, when i told my brother about my cancer, few minutes later he told me that he can always give me lift to hospital, even if he is not working( and betwin us even i paid the gas for him like he ask), he said he is married not alone.. i felt so sad, that how poeple can be selfish, that is hurt very bad but like my best friend sayed it is take all kind of people to do a world.

don't feel you are the only one that is living your cancer alone, my hausband is not in my side i didn't see him for 6 months coz he may have to go to jail coz he is in debt in milllions of dollars, so in u.a.e. there is no law for bankrubsy( excuse my bad english). so what can i do and what can you do, try to survive those bad days coz one things is sure like the goods days are gone the bads days too will be goon.

try to keep standing even if you are so weak those times. people always are telling you you are strong but they don't how mush can cost us to try to stay strong.

take care dear.
_________________
28 y f
thyroid cancer (28-09-09)

thyrodoctomy total+ sternotomy median 2009

what is worth the price always worth the fight.
stay strong and live strong.

joepet · Senior User Joined: 18 Dec 2008 Posts: 288 Location: Japan

Hi Aisha,

Given that the first ex is pretty well off, shouldn't he be paying some type of child support that at least eases your money worries? I imagine that some arrangement may have been terminated when you remarried, but as you are currently single I'm pretty sure that that status should be revisited. If monetary support is an issue, you should definitely followup with the CSA to get what you deserve.

Hope you are having a peaceful weekend!
_________________
Age 37 (36 at diagnosis)
Diffuse Large B cell Lymphoma
Stage 1AE (localized in colon)
Began six cycles of R chop 21 3rd Dec 2008
Finished R chop 21 Apr 2009
Complete remission as of May 2009

aisha1

Hi guys!

In my deeply confusing life - I have all sorts going on. Thanks for listening to my rants or attempts at an explanation!

By the way, before I start, did anyone have stomach ache during chemo? It is not a sharp/acute pain, it's more like an ache that rises up now and again. On a scale of 1-10 I'd give it a 5 rising to a near 7. I've had it now for 3 days and paracetamol or ibuprofen won't work, my sister told me that someone told her that mint tea works well. I don't have trapped wind. I do think, however that this could be intestinal.

So.......... Joepet,
My first Ex (Oh god this is sounding like Jerry Springer!) is well off. The reason I don't ask him for anything is because when my daughter was about a year old, his Mum was moving house and she gave us her sofas when she moved. I DID NOT HEAR THE END OF IT! We didn't even need the sofas. I just took them because I didn't want to hurt her feelings and say that they weren't my style. They were still quite new, and so I just took them. After that, she kept on saying "What have you done with my sofas? Are you still using them?" She was still referring to them as "my sofas" 2 years after she gave them to me. When my daughter was about 3/4 she came home and told me "Those sofas are for me to sit on because my Grand Ma gave them to you for me, not because she likes you, she said that they were a present for me." OUT WENT THE SOFAS! She fills my daughter's head with all sorts of crap and thank god my daughter is now old enough and mature enough to see through it a bit.

But this brings me back to the point of why I have never take any money from her dad. I am usually working and so all I wanted from him is that he looks after his daughter when he has her at weekends. He used to pay for school uniform and school shoes, but this year didn't offer, so I didn't ask. I just bought everything myself. If I took money from him or even worse, chased him for money through the CSA my daughter would never hear the end of it. I would be a money chaser, I would be 'the poor one' I would be a scrounger, I would be a sponger - sponging off someone elses hard earned money. They would want me to show receipts for where it went etc etc. At the moment, I'm broke but I'm free if you know what I mean?

Zakia, looks like you have some problems of your own! Wow your brother is quite tight! Laughing

Your husband is also in a tricky situation. Looks like you are surrounded by madness as well. Probably more than me. In these situations, you have to just make the best with what you have in front of you and live through it I suppose. Not much else you can do is there? Like you said, some days are good, some days are bitter. I can understand how you feel though.

ChemoMan cheers, you will be getting sick of my writing by the time I'm in remission! Laughing

Cinnamon,
Why did you call yourself cinnamon by the way? My sister loves cinnamon.

I spoke to a Macmillan nurse (cancer advocacy group/nurses/advice kinda thing) and they told me that they don't have any home helps. Social Services took over that role because of some sort of legal stuff. I'm tempted to go to Social Services and ask for help, but I don't trust them.

So, today is another day. I'm feeling like I have got a lot of my frustrations out and I have also had a good sleep. I woke up with the stomach ache, but at least I actually slept through the night which has done me well. I'm going to have a nice hot relaxing bath. I'm supposed to have showers because of the central line but I'll just treat myself to one bath - it might ease my stomach. I'll just change the dressing when I get out.

Thanks to all of you. I feel better now that I've got that out!
_________________
Diagnosed Hodgkins lymphoma, nodular sclerosis, grade 2.
Stage II/IIIa.
Chemotherapy ABVD started August 2009.
Still looking young Wink

ChemoMan

Hi Aisha

Because of your symptoms i.e. indigestion and now stomach pains I would get a check up for stomach ulcers. Its a breath test to test for the presence of helicobacter pylori the bug that causes stomach ulcers. The bugs are also implicated in lymphoma of the stomach by the way. While indigestion during chemo is not unusual bad stomach pains are not to be expected. A G.P visit should sort that out no need for the hospital. The test is simple and non invasive.

Good luck
_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... Don't forget Rule number 1

SingleDad

Good idea for the ulcer test but I suspect your digestive flora is getting hammered by the chemo and your mucus membranes are perhaps inflamed or being very sensitive to food - mine were.

Be very careful with ANY spice in food.....bland rules.
Lots of small meals instead of 3 square.

Live yogurt every day and smoothies with live yogurt and bananas are excellent - nutritious and easy to digest.....careful with ANY citrus products of any kind.

Mint tea is very good - even better with a bit of honey.

Frozen yogurt in smoothies soothes a restless tummy as well but mind stuff like raspberry seeds etc.

Good luck.
_________________
Age 61
Diffuse Large B cell Lymphoma Stage 2/3
CHOP+R started Feb 26th 2009
Completed 6 cycles June 2009
Diary here http://cancerforums.net/viewtopic.php?t=12003
Officially in remission July 9th 2009 Wink

Three rounds of Intrathecal completed July 29th
Radiation to come as a prophylactic measure.
1st Radiation Sept 9 - 17 does completed Oct 1.
No more treatments scheduled
Heading to South Africa in January - once the itching stops Mr. Green

aisha1

OHHHHHHHHHHHH THIS IS GREAT!

I signed in this morning hoping to find that someone had written some sort of solution! I have two! Razz

One medical, one home remedy! This is great. I love being part of this forum, it is so informative and helpful. Lastnight I had it badly. This is now 3 days I have had it for. It seems to be worse when I have eaten. Small meals are a good idea. I hate having it at night, it's not nice at all.

So, in order of both of your humble opinions, I am going to take SD's advice, and also make a trip to the doctor. I need to see him anyway, haven't seen him since all of this began and I want to thank him for picking up on my lymphoma so quickly. I went to him with the lump in my neck and told him of my symptoms. Within 3 days I had a chest x-ray, the results, a CT scan, the results, and a referral to the hospital. That is unheard of in London, and I know it's because he has a lot of connections with the hospital and the consultants and I know he did a bit of fiddling to get my scan and results back early, so I appreciate that and I need to tell him. I wish I could afford to buy him a nice present but for now he'ss have to take a card! Laughing

This morning, the pain is not bad. I can feel it in the background but it's not as bad. I'm going to have a small breakfast of toast and banana milk in the blender.

Thanks guys! Lots.
_________________
Diagnosed Hodgkins lymphoma, nodular sclerosis, grade 2.
Stage II/IIIa.
Chemotherapy ABVD started August 2009.
Still looking young Wink

cinnamon · Regular Joined: 02 Nov 2009 Posts: 22

Bananna milk?....that sounds pretty good to me!

And by the way..."cinnamon" is part of my name...LOL Years ago, when the Cinnamone clan originated in France we were evidently such scoundrels that we were thrown out of France and moved to the States. A little bit of messing with the spelling of the name, why? , I do not know, and the clan became known as the Cinnamons. Sheeeesh...I think I know too much about my heritage....LOL

Hope all is going well and the kids are treating you well...lol

Hang in there!

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