Acute Lymphoblastic Leukemia

batweaselx

Hi, I'm new to this and this is the first post I've put up. Last week my boyfriend of almost 7 years was diagnosed with ALL-Acute Lymphoblastic Leukemia, he's 25. He wasn't well for a cople of weeks beforehand but only had really vague symptoms. Anyway to cut a long story short he'll be in Tallaght Hospital for the next 6-8weeks, he's already started treatment during the week, small doses of chemo and steroids. All his other tests are coming back ok, no enlargements of organs and his heart is in great nick. But it's scary as hell, I'm exhausted from it all, I'm trying to stay strong for him but he has always been the one to support me and now I've to be there for him I feel there's no-one there to help me cope. I'm so overwhelmed and scared from it all. I'm just wondering if anyone out there has gone through the same thing or is currently going through it??

CathyMoran

batweaselx wrote: »

Hi, I'm new to this and this is the first post I've put up. Last week my boyfriend of almost 7 years was diagnosed with ALL-Acute Lymphoblastic Leukemia, he's 25. He wasn't well for a cople of weeks beforehand but only had really vague symptoms. Anyway to cut a long story short he'll be in Tallaght Hospital for the next 6-8weeks, he's already started treatment during the week, small doses of chemo and steroids. All his other tests are coming back ok, no enlargements of organs and his heart is in great nick. But it's scary as hell, I'm exhausted from it all, I'm trying to stay strong for him but he has always been the one to support me and now I've to be there for him I feel there's no-one there to help me cope. I'm so overwhelmed and scared from it all. I'm just wondering if anyone out there has gone through the same thing or is currently going through it??

Hi,

your post struck a cord with my husband (smccarrick) and myself - I was the patient and he was the carer. I had oesophageal cancer which was diagnosed when I was 32. I had 3 months of one week on chemo (while in hospital) and then 3 weeks recovery - I got married 2 weeks after chemo finished. Then I had surgery the following February.

My dad is a full time carer to my mum and my brother found it hard to cope with my illness so it was left to my then boyfriend to look after me - one of my cousins that I did not know very well but who had experience with cancer helped - we would have been lost without her. There is help - the Irish Cancer Society are wonderful, also family and friends can be great.

I dont know if this makes any sense but I just wanted you to know that you are not alone - huge hugs and best wishes to you and your boyfriend.

batweaselx

Hi cathy, thank you for your support. It's very similar to our situation as my partners mam is a full time carer for his dad who has a long term illness so I really have taken on the role as the full time carer. I am lucky that I have good friends. And I do plan on getting in touch with the cancer society. I am trying to remain positive and for now I am but I know there will be tough times ahead.Thanks again for your kind words.x

LegacyUser

I really feel for you.My boyfriend was diagnosed with acute myloid lukemia 2 years ago.Its a very long,hard battle and at times all you will want to do is stay in bed and cry but you know you have to try to stay positive for your boyfriend!Unfortunetly,my boyfriend was in hospital for pretty much the whole two years due to infections and different treatments so I wasnt in a position to be his career,but I did stay most nights with him in hospital!I hope you and your boyfriend all the best!Keep strong and try to focus on the good stuff like when he gets good blood test results.It will help you keep going!

The_Conductor

Hi,

First of all, hugs to you- I know what you're going through, its like living an ongoing bad dream, without any idea of what the future holds.

It is exhausting when your other half is in hospital- both emotionally and also physically exhausting. Its really really hard to be the rock of support that they need you to be- a friendly smiling face first thing in the morning- company during the drips which inevitably start in the afternoon and stretch into the night- doing little things to let them know that they are loved and that you are there for them, come what may.

I don't know the chemo regime your other half is on- the one my wife was on in Vincents was a series of different drips over the course of 8-10 hours in succession. She was on a cycle- with different chemicals at different stages. She would be bright and alert early in the week- by Wednesday or Thursday it was hard to not cry when you'd see her.

There isn't a list of things that you can do that will cheerup your boyfriend, or even make him smile- any list you have will be something that you decide is appropriate to him and his temperment.

My (now) wife knew she was going to loose her hair- it sounds ridiculous in retrospect- but I washed her hair and brushed it as gently as possible- to try to help it stay as long as possible. I used gently clean her pillow before she awoke- so she wouldn't see lumps of hair falling out- and I got her lots of really cheerful wooly hats that looked great on her and also kept her nice and warm when she was out and about.

My wife was on a chemo cyle which was along the lines of 1 week on- 3 weeks off- it would take her almost all of the 3 weeks off- to actually get sufficient energy to get out of bed at all- she might have a couple of good days- before it was due to start again. We made the very most of those good days- I still had to work- but she used get a taxi into Dublin and we'd have lunch together- and try to have a little normality in our lives for the few days she was up to it- always trying not to think of the next round of chemo starting the next week.

We got married the week after her last round of chemo.

She wasn't well enough after all the chemo for the surgery she needed- so we enrolled in a swimming pool close to where I work- and I would make her get up with me early in the morning and bring her swimming and then make her eat breakfast- before sending her home again in a taxi for a few hour sleep- and I'd wake her again at lunchtime to make sure she ate and then get home as quickly as possible to cook her something in the evening.

The chemo affects your sense of taste (I guess it varies greatly depending on what the exact course of chemo is)- but the foods which she normally liked went out the window. It didn't help that she is also a type 1 diabetic- trying to design meals that would interest her and be good for her was a difficult difficult thing.

As she improved a little- we took a well deserved break away- a week in Paris in February. She was thrilled to get away- I don't think she thought she'd ever be able to again. It only really hit her when we were waiting to reclaim our luggage in CDG in Paris. She was in tears, so happy to be well enough to get away for a few days- Paris was chosen as somewhere very easy to get back from if her condition worsened at all. We were caught out by a general strike in France- and despite her protestations- discovered she was up to doing a little more walking than she had thought possible. I was very very careful to know exactly where I was- and I had a phone number for the concierge in the hotel in case I had to bring her back and wanted him to organise a taxi or anything. We had an amazing time.

Neither of us really asked what the surgery entailed, or sought any details on it- she had immersed herself in statistics and didn't expect to pull through- me, I'm an unusual sort of an optimist- you can throw as much crap at me on a daily basis as you like- and providing I only have to deal with it as it arises, I can get through it, I always do. I suppose thats the best advice I can give you- make the very most of any good days you have- and on the bad days- take them one day at a time- cross those bridges as you come to them- don't terrify yourself by thinking about what might possibly be coming down the road.

We didn't have a lot of support- one of my wife's cousins is a living saint, I can't thank her enough for all those times she dragged me from the waiting room for coffee, gave me little words of wisdom, told me about her day was going- and so often, drove half way across the country just to be there when my wife was having a bad day and I wasn't able to do anything other than hug her.

My manager was a saint, I'll never forget how good she was to me. I managed to work half days throughout- and then take extended leave to care for my wife when she was eventually released from hospital. Unfortunately due to my own illness- I have no mortgage protection etc- regardless of how bad things were- I still had to make sure the mortgage got paid. I even paid it on my credit card a few months- before I organised a meeting with the bank and sorted out the mess I'd dug myself into.

Having your loved one in hospital for a protracted period of time- with an unknown diagnosis (or in my case- a wife who had prepared for the worst- she made her will, she chose the songs she wanted to have played at her funeral if the worst came to pass- she even went and chose a coffin- she made a list of instructions for me to open at various stages- sorry, I'm in tears even thinking of it now), is one of hardest possible things you can ever do.

I stayed in a chair by her bedside overnight several times- she fell asleap holding my hand, I never wanted to let it go.

After the surgery and its complications- I brought her home from hospital- I was terrified. I was well used to illness- but had never been in a position of having to totally look after someone before. Even the simplest of things took on a whole new dimension of difficulty. I had never had to wash someone else every day, she could only lie on one side- but I had to make sure she regularly moved so as not to develop sores, she had so little energy to do anything- but I wanted to make sure that she enjoyed herself whenever she was up to doing anything. I had to go back to work after a few weeks- when my leave ran out- but I'd get up incredibly early in the morning to make her something to eat and do the morning regime- and then I'd have a permanent Skype feed running from my desk to her laptop in bed. If she needed anything I tried to make sure I could handle it. She did have a hypoglycaemic attack one day- I was terrified, I rang 999 and told the them to break down the door if they got there before me. I got to Lucan from the city centre in 11 minutes flat- thankyou Gardai. She had collapsed inside the front door when the ambulance men rang the bell- but we were in time and she was fine- if very shaken.

I'm rambling- I'm sorry- I could keep tapping the keys on my laptop here......

Big hug,

Shane

_Whimsical_

Op I'm really sorry to hear about your boyfriends diagnosis. You have got much better and more knowledgable support than I could ever offer but I just want to say I really hope your boyfriend responds very well to treatment and is better soon. It's a hard road and when you have a long term illness or treatment to contend with the only way to handle it is one day at a time. Try not to think too far down the line or make too many contingencies until you know exactly what you're dealing with.

Like smccarrick and others have said one of the things that will get you and your bf through is trying to consciously enjoy whatever small things he can do. Sometimes that'll be very small things like just lying together in bed listening to music or watching a DVD together or having something nice to eat. Try and make a little occasion of those things when you can so you can both consciously enjoy them. Having small things to look forward to makes life better and getting lost in enjoying something for half an hour can give you a little more strength to cope. You just being there for him,even when he's cranky, will mean alot.

smccarrick wrote: »

I'm rambling- I'm sorry- I could keep tapping the keys on my laptop here......

I could read your rambling all night. You and Cathy could write a very valuable and interesting book offering an insight into serious illness from the perspective of both people in a relationship. I could imagine it becoming a best seller and providing alot of support for others in the same situation.

CathyMoran you are a lucky woman!

That was an incredible post smccarrick. I am really touched by it. You've both been through so much and your love for each other is truely inspiring. That post reminded me that real love,as we imagine and hope it would be,exists.

batweaselx

My apologies for the delay in posting a reply to you all as I haven't been near a laptop or PC for the last week!! But I have to say I can’t believe how kind you have all been in taking the time to write a reply. A massive thank you to you all for your kind words. I cannot tell you how much it means. Especially smccarrick, your post was incredibly moving and honest and so detailed. Thanks you for sharing it with us.

Well to update you all, my boyfriend is in hospital 2weeks tomorrow. So far all of tests are coming back good and the doctors are happy with his progress. He has been taken off antibiotics for the first time since entering hospital and he is having no side effects to chemo yet. But I'm not naive and I am quite sure it's going to get worse. I'm not totally sure what way his treatment plan will be eventually but at the moment he will be in hospital receiving treatment until he gets into remission which may be as soon as 4 weeks or so. When he is in remission he will be allowed home a couple of days a week and then will spend the other half of the week in hospital receiving treatment. Once it gets more under control he will be reduced to chemo once a week as an outpatient for the foreseeable future, at least a year we've been told but it could be 2 or 3.

He is so far receiving steroids daily along with clotting agents and blood transfusions every couple of days and at the moment the drip chemo is every 4 days or so. He has also had semen frozen as there is a chance he will become infertile while taking the chemo. He is being so incredibly strong regarding the entire process and his positivity and strength amazes me. I don't know what I would do if he does not come through. It has made me realize how much I love him. Although we are both still young (23 & 25) there is nothing I wouldn't do for this man and this has really made us think about the future and what it holds for us. Hopefully lots of laughter and good times and eventually wedding bells and babies all going to plan. Well that's what I am going to try my best to focus on because if I don’t I couldn't cope at all.

I am not a negative person and I know that in the end he will come through the other side, well most days I do anyway but I'm finding it tough to cope and at the moment its mainly all the practicalities of his illness, it's hard is trying to mesh my 'normal working life' with the hospital life.

I am working in the midlands and while I was lucky to have 2 weeks based in Dublin around the time he was admitted, now I'm back in my old job and I know for my health I can’t physically be at the hospital every day it kills me knowing that's where I want to be. I am taking 2 weeks holidays at the end of next week (the 2 of us were meant to be heading to sunnier climes but unfortunately had to cancel which is going to be tough as we were so looking forward to it) so that will allow me to be at the hospital more but over the long term it will be tough and awkward. Also we both still live at home which will make it hard when he gets home as I will want to be with him and care for 24/7 but I know that will not be possible. I had just taken up a place in University in the UK a it had always been my intention to go back but I've just decided to defer my place for a year, though he doesn’t want me to as I've jus managed to get my career path back on track. But I cannot bear to think of the prospect of being that far apart from him during all of this.

As I mentioned my boyfriend is incredibly strong about it all as he always has been. We've been together quite a while, (6 years) and he has always been the one to be there for me. He always hugged me and made it all seem better. He has supported me through all my tough times, although looking back I'd take them a million times over this any day! Now I’d give anything for a hug, I miss that intimacy now but I know it will come back eventually as well.

I just don't think I've dealt with it though, I've been so busy running from one place to the hospital that I haven’t had time to dwell on things. He is my best friend and I'm more me around him than I am with anyone else. I do have other great friends but I wouldn't feel comfortable opening up to them and letting it all out, he has always been that person to me but now he needs to be selfish and concentrate on himself and the last thing he needs to see is me falling apart. I know it will get easier eventually and all his signs are good I'm just feeling exhausted by it all.

Apologies for rambling but letting it all out has really helped me. I've written stuff down I didn't even know I felt until I started typing!

Thanking you again for your best wishes
xxx

LegacyUser

I am so sorry to hear what you are going through. I watched my cousin going through treatment for leukemia and know the toll it took on his parents and wife. It's incredibly tiring and difficult having to go to work and look after yourself while being at the hospital so much and wanting to be there all the time. Is it possible you can take some longer time leave from work ? Maybe unpaid but as you live at home and have no dependants it might be something you can do ? I don't know how you're managing to be at work anyway, life is far too stressful for you. By the way my cousin is now ten years since his leukemia and they've had gorgeous twins thanks to the Rotunda's sperm bank. I really wish the same for you both. Try look after yourself and ring the cancer sociey if you haven't already

batweaselx

thank you all for your kind words. Yep it is physically exhausting. Friday was my first proper day back working and I'm really feeling the effects of it all now! About taking time off...I'm not too sure what way work would take it to be honest. I've got 2 weeks holidays starting on Friday so I suppose I'll see how he's doing by the end of that and take it from there.
I'm glad that your cousin got through it and is now happy and healthy. Hearing happy stories like that really helps! Thanks again for your kind words and compassion.

_Whimsical_

batweaselx wrote: »

thank you all for your kind words. Yep it is physically exhausting. Friday was my first proper day back working and I'm really feeling the effects of it all now! About taking time off...I'm not too sure what way work would take it to be honest. I've got 2 weeks holidays starting on Friday so I suppose I'll see how he's doing by the end of that and take it from there.
I'm glad that your cousin got through it and is now happy and healthy. Hearing happy stories like that really helps! Thanks again for your kind words and compassion.

There are lots of happy stories. One of my best friends had cancer similar to the type your boyfriend has at 25 too. His doctor ignored his illhealth for a long time so his cancer was very advanced by the time it was diagnosed and he had secondaries in his liver and spleen. He was told it was so far gone that it could no longer be staged and that there was not much hope for his recovery. He had his treatment however and it was miraculously effective.His gf stuck by him all the way and they got married one year to the day after he got the all clear.5 years later he has had twins and never had another days illhealth.
Just keep hanging on and remember on bad days that there will be better ones and that you have to expect dips and time where your boyfriend will feel awful. Try to remind him and yourself that they will pass. I hope that your time off work will be helpful for you both.

batweaselx

Thats such a nice and positive story about your friend chilly.. I do know myself and my boyfriend will get there too and now after 3 weeks it's finally sunken in and I'm over the shock and feel better prepared for it. Thanks again for sharing the story.

CathyMoran

batweaselx wrote: »

Thats such a nice and positive story about your friend chilly.. I do know myself and my boyfriend will get there too and now after 3 weeks it's finally sunken in and I'm over the shock and feel better prepared for it. Thanks again for sharing the story.

Just wanted to wish you and your boyfriend all the best - we are all sending you positive wishes.

batweaselx

So finally an update..It's been a while since I've had time to come online so apologies for my delay in replying. Well my boyfriend is responding really well to treatment. He has finished his first course of chemo and we're waiting on results from tests to see if he's in remission. It's looking good though as some of the preliminary results came back very positive. Plus in the last week or so he's been allowed home as his bloods have been up continually. At first it was just for the day and then last weekend he came home Sunday and didn't have to go back up until Tuesday morning. That was great for him to be back in his home environment and to see his family at home. And also for me too, we got to watch telly at home and do 'normal' things! It was a bit weird though like as if he's never been in hospital at all!

With regards work, I spent the majority of my 2 weeks off at the hospital. I thought I was dealing with it really well but since I returned to work I was finding it all overwhelming and especially the job I do can be quite difficult, dealing with irate customers. I've also been feeling a bit unwell so after seeing my doctor she's advised me to take some stress time off. So I've 2 weeks now to myself so hopefully it'll do me good. My boyfriend has banned me from the hospital for a while, I think I was there too much and it can be a tough place to be. So that's it really, I just wanted to update you all as you've all been so great!

sean_17

Hey I just finished treatment for Acute Myeloid Leukemia, I was originally diagnosed with ALL which I was told was "the best type" to have [I can't say I agree, they're all cancer!], anyway the next day after more tests I was told I had AML. I had 7 months of intense treatment, lived in the hospital basically and am off treatment 6 months now. It was caught mid staging, another month and it would have got to the fatal stage, so for that I'm pretty lucky. It was only by chance I had a blood test done. I met loads of people going through ALL treatment, most of whom could keep their lives pretty normal after the first 3 months of tretament. The treatment now just fantastic and the fact it hasn't spread anywhere is a God send. That said you're lives may be a bit different for the next while, but look toward the future, the survival rate for leukemia is growing everyday, as far as I know, I may be wrong but its in the high 80s, maybe even 90s percentile.

I know for me spending 7 months in hospital made me appreciate life more and has made me so grateful to be alive.

I wish you luck, PM if you have any questions.

budgie1984

sorry to hear about your boyfriend i never had cancer myself knew alot of people with it **** that sounds bad talking in past tense sorry but its no joke lots of my friends have died coz of it but some also beat it and are living normal lives, everyone who died had one thing in common they all had bonemarrow transplants, not all had leukemia though, 2 had aplastic anemia one of them was my best friend his transplant went well but his liver was pretty screwed and it gave up on him, have spent a long time in tallaght hospital and national childrens hospital in harcourt street before they moved to tallaght, I attend St James now had to transfer there when i turned 18 im 25 now, stayed in tallaght as long as i could coz i knew most of the nurses there from the age of 7 in harcourt street. i suffer from autoimmune haemolytic anemia and autoimmune hepatitis, was on oak ward there for a long time an let me tell you your boyfriends in good hands, all the staff there are really nice and they have an excellent haematology team there. Is his doctor Owen Smith? not sure if he's still there, the best doc in his field of expertise in the country although id love to box his brains in for the lenght of time he had me on steroids, If lorna storey is still the head nurse there tell her the lad from carlow with A.I.H.A says hi

budgie1984

oops sorry forgot your boyfriend is 25 he wouldnt have been on oak ward since thats for kids an also Owen Smith wouldn't be his doc since he mainly deals with paediatrics in tallaght, On weekends a Doctor Enright from the adults side would come to see us there she too was extremely nice and a good doc anyway hope your boyfriend gets through his chemo with no problems and is feeling well soon

sean_17

As far as I know Owen Smith is now in Crumlin Hospital

batweaselx

Thanks everyone for the kind words. His doctor is Dr.Enright. She's extremly nice and says it like it is, no sugar coating. All the staff, nurses, doctors, porters everybody in Tallaght are all extremly nice and helpful. He was first placed on the Ruttle ward and was moved to the Webb ward after a week where he remained until Sunday the 19th. He was home for the weekend and is headin back tommorrow but he'll be treated as an outpatient as he's responding unbelievably well to treatment so at least he'll be home every evening which is great.
Budgie 1984, you're from Carlow? My boyfriend and myself live only 10 mins from Carlow town!

LegacyUser

The treatment for this particular cancer is very tough and things go up and down. Infections are a problem. You know all this. My family is going through this at the minute. Really hope you're both going well and that he gets out of this on the other side. You've a very good chance of doing so. You'll have ups and downs on the road but you'll get there. Best of luck.

CathyMoran

The previous poster made a really good point - yes, there will be a lot of ups and downs but do remember that the human body has an amazing ability to recover. My husband still remembers most of my chemo but I do not, ocassionally I get flash backs but that is rare - I think that my mind just supressed the memories so that I could cope. I know that you are worried for him but I did not feel that what I went through was bad at the time.

I am delighted that he is doing so well and wish you and him all the best - huge hugs!

ps. Best wishes to efef and your family also.

batweaselx

As Cathy said she doesnt remember her chemo and it was worse for her partner in my case I think my boyfriend is coping so unbelievably well. I think I'm finding it harder to cope than he is. Don't get me wrong I'm fine, i can manage day to day things but any little changes or upsets in general life not just his treatment do tend to tip me over the edge, like I can cope with his illness but nothing else! But i know I'll get used to it and will cope better hopefully. As I said he's doing great, no reactions, no infections, white bloods are up...all is good. He's in remission a week tommorrow which is great. He was home for a week and the idea was for him to receive his treatment as an outpatient which suited us brilliantly, as he was having no side effects we could do normal stuff and that's what we wanted to continue doing but today he went up and they've decided to keep him in. His consultant is on holidays and they are being precautious. so now I've to face the hospital tommorrow after a week of not being there. I'm already sick of travelling to and fro and we're only 6 weeks in! I know its selfish to say that but I'm a bit wrecked from it all. He told me he's fine and i don't need to come up but I feel awful when i'm not there with him. Anyway enough of my moaning! Sorry for ranting!

budgie1984

Yeah I live right beside Tesco in New Oak, what part of Carlow are you from?

The_Conductor

Hi batweaselx- I wasn't going to reply- but I felt for both you and your boyfriend's sakes that I should.

I know only too well how difficult it is to cope- its exhausting- the emotional exhaustion can be even more draining than the physical exhaustion. It is not selfish to admit you are exhausted though- and unless you do- you will collapse eventually.

Its not unusual to be kept in for chemotherapy- it doesn't even signify that they are being overly cautious- simply they may feel its in the patient's best interests. As you have both discovered- he is probably reasonably ok for the first day or two- but as the week progresses- the effects of the chemo are cumulative- and where an outpatient approach may work in the early week- it may simply be too much for him later in the week.

The travelling to and fro is doubtlessly a massive strain for you. I would suggest exploring what your options are- is there any possibility whatsoever to try to get accommodation locally for a couple of nights- taking the strain of the journey off you? With the best of good will in the world- hospitals are exhausting at the best of times- but the prospect of several hours commute on either side of a visit can be destroying- when you'd rather be there with your loved one........

I had an incredibly understanding manager who was so helpful to me- she allowed me to structure my work around spending as much time as possible with my wife in hospital. Have you spoken to your work about trying to get flexible arrangements temporarily? Most places are understanding and will go that extra mile to try to be as accommodating as possible, when you explain what the situation is.

Hugs,

Shane

budgie1984

The travelling to and fro is doubtlessly a massive strain for you. I would suggest exploring what your options are- is there any possibility whatsoever to try to get accommodation locally for a couple of nights- taking the strain of the journey off you? With the best of good will in the world- hospitals are exhausting at the best of times- but the prospect of several hours commute on either side of a visit can be destroying- when you'd rather be there with your loved one........

Dunno what way things work with regards to adult wards in tallaght but on the way up the the kids wards thers's a door on the right (ya need nurses swipe card) anyway there's 4 or 5 rooms there that parents could stay in, think you ask one of the day nurse's to put ya down for one then the night nusre will let ya in. My ma stayed there sometimes and for a good while when I was in the Intensive Care Unit

batweaselx

Thanks guys..To first answer shanes reply..thank you for taking the time out to reply to my post. I know how hard your experience was for you and I appreciate your taking the time to respond. Well he has done his first round of chemo and achieved remission. He's on his 2nd round and the only reason I'm annoyed or upset is because they initially said he would be an outpatient and they keep chopping and changing.

Would you believe after 6 weeks of treatment he's only had mild tingling in the tips of his fingers. No side effects even after a couple of days! The doctors and nurses are amazed and quite shocked that he hasn't had any effects at all.

Like I said he was home for almost a week with normal life completly restored, going for dinners, pint with his freinds etc. It was like he wasn't sick at all. My best friend is a nurse and she thinks he's like an iron man or something! I'm counting my blessings he's well now I'm waiting for the day somehing goes wrong and he does get sick or have side effects. But I do know it is bound to happen at some stage.

With regards to accomodation, for the 6 weeks he was in hospital I was staying with my grandmother in Beaumont as I was on 2 weeks summer hols from work. But it's an hour and a half journey each way twice a day, it's exhausting and I'm dreading getting back into that routine.

To be honest after 2 weeks summer holidays I went back to work and found it extremely difficult. I work with customers and alot of complaints and I was on the verge of tears every day. I went to see my doctor and along with my own health reasons she advised me to take 2 weeks off. I'm currently in the middle of my first week. I don't get paid for any of it but the relief is unreal and they're really are more important things than money. My job was only a stop gap as I was offered a university place in the UK to finally get my qualifications so naturally I deferred my place. But to say I dislike my job would be an understatement.

budgie1984, I don't thonk they would let me stay in those rooms as his condition is not that serious in that he's not critical. They would want to keep them for people with family in I.C.U.
Well we're not from Carlow but I work in Carlow and my bf went to college in the IT in Carlow. I live about 25 mins away in Laois and my bf lives near athy in kildare.

budgie1984

ya dont have to be in a critical condition to be allowed stay there, just using it as an example in my case coz i was the oldest person in both the haemotology section and the rest of the ward when i was there. My ma stayed alot when i was 7 to 11 in harcourt street hospital, when i relapsed at 15 told her not to come as much coz she'd be exhausted from travelling so much.

Parents of younger kids stayed over quite alot, the head doc liked to have a parent or even brother or sister stay over to keep up the morale of long term patients. parents or an older brother or sis would stay in those rooms, a brother or sis of similar age stayed in the room with them on a fold out bed

came in handy also coz whenever an adult family member was around they let ya over to the square for a few hours if ya wanted to go out.

had to sneak over myself sometimes even though i was 16 or 17 at the time they still wouldn't let me over without an adult

CodeMonkey

batweaselx wrote: »

Would you believe after 6 weeks of treatment he's only had mild tingling in the tips of his fingers. No side effects even after a couple of days! The doctors and nurses are amazed and quite shocked that he hasn't had any effects at all.

Like I said he was home for almost a week with normal life completly restored, going for dinners, pint with his freinds etc. It was like he wasn't sick at all. My best friend is a nurse and she thinks he's like an iron man or something! I'm counting my blessings he's well now I'm waiting for the day somehing goes wrong and he does get sick or have side effects. But I do know it is bound to happen at some stage.

Different people react differently to the chemo treatment depending on age, general health, drug used, emotional state etc. He's going to be a little weak and tire more easily after a while but I'd expect him not to have any major side effects problems and get sick. He's most likely going to be physically ok during the treatment unless he picks up some infection and that can be managed with antibiotics.

I had AML and was never really sick from the chemotherapy treatment either. The worst thing wasn't the chemotherapy but the bone marrow biopsy especially when done by an inexperienced doctor who doesn't administer the local anesthetic properly. That and the lose of appetite because the hospital food was crap but the taste buds are damaged and takes a while to recover so food outside wasn't great either. Then there's the boredom of staying in the hospital but I was in St. James and got a laptop and signed up to the irishbroadband wireless broadband (their base station near guiness brewery) and so had internet access when in hospital.

batweaselx

All is not too bad now he's been discharged. they're going to give him his chemo as an outpataient which is great news. I was lucky that I've family in Beaumont in dublin so I could stay with them while he was up there but with public transport it did take bout an hour and a half each way which was tiring so it's great to be home now and he drives up for his treatment so we're back home each night which is fantastic.
While he was up there i got him a pay-as-you-go broadband modem with meteor which was great and he does find the biopsy's the worst thing he has to get. Although he has to get lumbar punctures almost every week and i don't know how he does it, he dosent mind them at all.
So all is good so far, i'm thanking god he's not suffering with chemo yet as i have seen how nasty it can be for some.

Tamara01

I'm sorry for what happened to your boyfriend, but I'm glad all is well now. I think the best way to combat ALL is to educate yourself about it. This will help you recognize the symptoms and therefore prevent the spread of cancer cells.