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just found out i have cancer.

Discussion in 'Health and wellbeing' started by tryingtoteach, Jul 21, 2007.

  1. tryingtoteach

    tryingtoteach New commenter

    thanks for the advice salsera. i'll def bare that in mind. joli - you hae put my mind at ease a little about the bone marrow. i thought it might mean something really serious ie incurable. i feel a little more prepared now and its nice to know i'm not alone in feeling nervous before every appointment.

    well best go and get dressed!spent all day moping on sofa watching 'this morning' and various other daytime tv!

    thanks again and i'll let you know how i get on at my appointment tomorrow. x
  2. tryingtoteach

    tryingtoteach New commenter

    well, went for my results yesterday. the lymphoma is in my neck and arms, which i knew, my chest, stomach and spleen, but not in my bone marrow or my pelvis. all the glands are small so won't need radiotherapy whcih is good.

    the treatment/drugs is ABVD i think. will be starting treatment next friday for 6 months. the way the doctor described the side effects it doesn't sound as bad as i thought, apart from the hair loss. not sure i can face getting my hair cut short just yet. from my estimtions i have until sep before it starts to come out!!

    feeling a little better now i have the results, which aren't as bad as they could have been. just wondering how you cope with the question which is going round my mind already - what if it doesn't work? i know you can't think like that and the odds are so good but i'm sure it will linger for the next 4 months untill my next scan. also, doctor said that having lymphoma can increase your chance of having other cancers in later life, or the lymphoma can come back. how do you live with it hanging over your head?

    any advice about treatment would be greatly appreciated. i'm going to put together a 'survival' box this week of things to do ie books, magazines etc, freshening wipes, relaxation things etc.

    ROSIEGIRL Senior commenter

    I'm glad your results weren't too bad - strange to be saying that under the circumstances!

    As for the big question, I've no idea. I guess its just a case of coming to terms with your increased risks, while not letting it dominate your life. Sounds a bit trite, I'm sorry.

    It sounds like you're getting yourself well prepared for your treatment and being very practical about it all.

    Don't forget to keep in touch when you feel like it - I'd like to know how you're getting on.

    Best wishes!

  4. Just wanted to wish you luck and I am thinking of you. Hope you make a full recovery!
  5. I worked with someone with hodgkin's lymphona many years ago. He virtually worked through the treatment, obviously taking days of here and there.

    I hope your treatment goes well. It is treatable, and you can get through it. I hope you get lots of support from the people around you too.

    Good luck x
  6. tryingtoteach, well done on getting the staging hurdle over. When does your treatment start and where are you being treated?

    You will find a rhythm to the treatment; some days you'll just want to sleep, others will be more energetic, some days you'll feel like there's nothing wrong, and then it starts again. It's all do-able.

    What if it doesn't work? As far as I understand, there is more than one treatment option for you - different combinations of chemotherapies that they can try. They can also use radiation therapy after chemotherapy if you need it. In non-hodgkins, RITUXIMAB, an antibody therapy is pretty successful (I've tried 3 times to get funding for it) and I've read they're trialling it for use in Hodgkins disease. You would still have options.

    As for the big questions - all I can say is they never really go away, but everyday life does tend to get in the way of too much introspection (thank god). You do learn to live with uncertainty, although some days it's easier than others. Best to try and concentrate on one day at a time.
  7. Hi trying to teach - I am pleased you had such a good holiday. I do think one of the things that you can find when you are dealing with something as awful as a cancer diagnosis is that you do really appreciate things that were previously almost taken for granted. It was a good idea to choose somewhere in the UK - I took a notion (in my last 'up' time) and booked a hotel over the Channel in France(it would have taken me less time to get there than Devon or Cornwall), but the hospital said I had to cancel as I needed to be near a UK hospital in case of infection etc. I was really upset, but I do understand now. Looking for somewhere closer to home/hospital now!

    That was a tough waiting time for your results, but it does seem to be very treatable. As you are young, fit an healthy they will blast you with whatever you need because your body (and mind) can take it. This is good news.

    As other people have said, I think you are doing exactly the right kind of things: blast off on here as and when you need to; listen to your body - rest/go out/have a bath whenever you feel like it; each day will be different and many will bring something new to deal with either phtysically or emotionally. But you do develop a strength (stronger some days that others). Sometimes I am half-empty and sometimes half-full. One thing is certain, life will never be the same..the worry. the fear of 'will it work?', the next set of results etc. but we will do it. There is a very big club out there (and on here) of people who are going through it themselves/ supporting others/ care and this helps a lot.

    I do commiserate about the hair worry - I found photos yesterday I me having my head shaved after my first chemo - strangly I was smiling at the horror of it. Although I have wigs, I have got very used to wearing scarves and I seem to get a lot of positive comments. If you are definitely going to lose your hair, you might comsider the gradual approach to hair loss - so may women say it is the worst bit.

    I have just had my 5th chemo - a new kind for the lymphs. I had to take mega doses of steroids which I was dreading. But apart from limited sleep they seem to have given me lots of energy. I am expecting a come-down any moment. It's very strange to be waiting for the next possible side-effect. What is it going to be? tingline nerve ends? mouth ulcers? complete fatigue? Who knows!

    How ofen will you have your treatments? How long will they take? Is it through a cannula?

    Lots of love and keep posting.
  8. hi i was diagnosed with cancer in may. I have just finished my treatment. It is amazing no matter what they throw at you you manage to cope. It is scary to start off but you cope. I am a complete scardy cat. I have cried at blood tests. I cried at my first chemo. The staff are lovely and you get through it.

    The big questions are hard to answer. Some days are good, some are scary.

    You love hearing sucess stories.

    I just think to myself i'm alive today....i'm well today......i don't think i'm going to die today......

    Who knows that day. You find out who your friends are, how important family is.....

    You learn how the world carrys on and dishes need washing, tea needs making, children need amusing.

    These things get you through...oh and lots of day time telly, satisfying those food cravings...and if you get steriods they are great.

    Good luck with your treatment, you will survive it.
  9. tryingtoteach

    tryingtoteach New commenter

    thanks so much for your support and advice. i can't believe how lovely TES members are. it really means a lot to me. my treatment starts on friday and i have chemo every fortnight which is one cycle. think it goes through my hand. nurse said time it takes to give varies as one of the drugs causes pain in the arm when going in so it depends on my pain threshold for how long it takes as they can slow it down. i'll prob be there all week!
    havng the treatment in wakefield - yorkshire, the place is ok, not really like a hospital but i'm still sick of it already!!
    going to talk to a nurse tomorrow to findout about the worst case side effects. great!!
  10. Hello all the people on this thread. Glad to see you are keeping your chins up and good luck with all the treatments.

    It must be very difficult trying to concentrate on your health with family demands.

    I always feel so awkward contributing to these threads, as I try (in between blubbing - I have a tissue stuffed up my nose now) not to sound clumsy and patronising.

    AS well as all the people on here willing you on girls, there are lots of other people looking in, who though not posting their support, are sending you their wishes and prayers.
  11. Buntycat - the fact that you posted is enough rather than shying away. There's never a right thing to say, but there are wrong things: 'I'm sure it'll be alright' and 'it's important to keep postive' are two of them.
  12. I have read this thread and amazed at the courage and support giving.

    I am sending positive vibes and hugs.
  13. tryingtoteach

    tryingtoteach New commenter

    well, friday is drawing closer for my first treatment. had a session with the nurse who told me all about the treatment an possible side effects. actually put my mind at rest a little although still feel a bag of nerves about actually having it. he said i might feel light headed while they put the drugs in and that the last drug can cause pain in the arm. for those of you who are going through this, how do you feel while you are actually having it? what side effects did you have?

    also went to see the wig woman! that was fun! its like choosing a ready made hairstyle!!!

    one thing i'm becoming paranoid about is the infection thing. i'm giving the house a good clean and have bought anti bacterial wipes etc. how much care do i really need to take. i know you can still go out, but take care but i feel i'm going to become paranoid!

    any laast minute advice before i start?
  14. salsera

    salsera New commenter

    Good luck tomorrow....x

    this is from a carers point of view....

    The time in hospital having treatment is weird - there is a real sense of calm and in ours we had a mad nurse who was lovely yo all patients. It's tiring but y OH felt safe and secure there.

    With regards to infection we were really strict initially. We ensured that no-one who came over had an illness of any sort. We insisted on washing hands etc from the kids. Als preparation of food is highlighted and not eating unpasturised stuff. My OH has a book from the Oncology unit citing dos and don'ts.
    There is a period of time when you are more open to infection - OH's was 10-14 days after treatment and then we would stay in and avoid contact.
    But as treatment went on we seemed to forget about that and found ourselves doing stuff and mixing with others on the 10-14 day period.
    Keep a thermometer to hand and if your temp rises then you should conatct the hospital - so know what your usual temp is for you.

    We had no infection - I think this is a good time (!) to have treatment as oppsed to winter when bugs seem to breed

    Take in lots to read and something lovely to nibble (hospital sandwiches are yuck).

    Hope this helps.

    Good luck

  15. I'm feeling so humbled and have cried my way through most of this thread.

    I just wanted to say to TTT and to all of you incredible people that you are wonderful. I have so much respect for you all and the way you are dealing with something so big.

    I'm one of the silent supporters, but my thoughts are with you, nonetheless.

    TTT I shall be thinking of you on Friday.
  16. On the infection side. I stayed in hospital for 6 weeks a few years ago and had my own room. I kept getting tummy upsets, which is very rare for me. I watched the cleaner come into my room, clean the toilet and then use the same cloth for the sink.

    I started to clean it myself with flash wipes after she was done and no more tummy upsets.

    I think hospital toilets may look clean, but they are not. As soon as you or any visitors have been near one, use your antibacterial wipes.
  17. Tryingtoteach - when the drugs are actually going in, the nurse should tell you what to expect, and you might or might not feel it.

    One of mine (dexamthesone, a steroid) caused really unpleasant prickly sensations in my bottom (!) and scalp, but I heard the person behind me say she felt nothing. Another drug she said might make me feel lightheaded, but it didn't. I have had a momentary feeling of sickness, which passed quickly, and a metallic taste, but they can give you a sweet to suck for that. None of it lasts long.

    I've had the same one as you that can cause vein pain, but the nurse used a heating pad around my arm and that seemed fine. I had more pain in that vein afterwards for a week or so, but hot water blottle and ibuprofen helped and it really wasn't too bad.

    Re. infection, the worst days are usually days 10-14. But I've often forgotten and just gone about normal business. Hand washing/anti-bacterial gel when you're out is the most important thing, and I never touch shop door handles!

    ROSIEGIRL Senior commenter

    Reading this thread and all about the experiences of people going through treatment has been a real learning curve. Thanks to everyone for sharing!

    Good luck for Friday!
  19. Good luck for Friday from me too.

    My friend had two children and managed to stay fit and well throughout. You can't avoid bugs with kids but luckily she was fine. I think just sensible precautions are needed. Don't let people into the house who are full of cold, don't go on public transport for a few days or shopping in supermarkets etc. Just stay close to home.

    Lots of love xx
  20. Re the infection worry, I can only echo what others have said. On the particularly low days I have tended to stay at home (no energy to go out anyway), and then as I have felt stronger I have tended to increase my range and have been on some quite adventurous trips (in the great big scheme of things). I have developed a radar for people with coughs and sneezes and my friends are aware of not turning up with a cold. Having said that my 17yr old daughter seems to have a permanent cold and I haven't caught anything yet......fingers crossed. In terms of cleaning everything with anti-bacterial wipes - no can do! I think it's just being sensible, being alert to possible vulnerable situations and taking that extra bit of care of yourself.

    Before I started my chemo I asked my oncologist what 3 things I could do to help myself get through it and help the treatment to be effective. At that point I was thinking diet..supplements etc. His reply was:
    1. Eat a balanced diet - enjoy your food.
    2. Stay away from snotty-nosed kids (sorry school)
    3. Live your life
    Although you can't do these all the time, they have stuck with me and, for me, make sense. I have a friend going through the same as me and she has a supersonically healthy diet (I basically eat what I fancy) and takes loads of supplements, and she has missed her chemo twice due to low blood count.

    Lots of luck for Friday - the first treatment is a obviously a significant one as, until that point no matter what people tell you, it's another unknown. For me, the worst bit is getting the needle/cannula in and then seeing those whopping great syringes. I always took something to read, but found myself spending the time talking to my friend/other patients. There has definitely been a feeling of camaraderie ..it's like a little club and you are all supporting each other.

    Thank you to people who have posted such positive comments after reading this thread, even though they may not have any particular experience of it themselves. It's all good and supportive and helps us all deal with the day to day stuff (and night: last night I had almost no sleep - steroids still hanging around, then panicked when I heard a mosquito (infection radar) but couldn't find anthing to deal with it so rigged up a mosquito-net (kind of), horrible leg and foot pains and then at 4am diarrhoea (sorry about that guys!)

    Good luck for tomorrow TTT. Think about something to look forward to next week - something small but important and special to you.

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