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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

    IhateIT - I'm at Pinderfields hospital in wakefield. the people there are fantastic. I have looked on the lymphoma associations website and will be signing up to join in the chatrooms. Its was nice to read the success stories, yours included. You reassured m with what you said about the statistics including the old and the ill. My dr also said that this is the cancer to get - it doesn't feel like that some days!

    How long was your treatment? How much of normal life did you carry on with? I've started to feel a bit more like myself and see the next 6 months as a week feeling 'off' and a week feeling ok.

    am supposed to be out for sunday lunch tomorrow but am worried about the risk of infection in a busy resteraunt. what do you all think?
  2. Oh dear, I spoke too soon about not getting an infection. I have just got back from a week in hospital with an infection! Here is what happened: Having had 4 lots of my first kind of chemo I had just had my first round of the new chemo. After I?d come down from the high of the steroids, I began to feel progressively weaker. On the Saturday I felt really lousy and decided to stay in bed. I put it all down to the new treatment. It was about 6pm on the Sat that I thought about taking my temperature. It was 38.2°. I remembered in all the chemo info it said that anything over 38 was a ?get yourself to hospital job?.

    I rang the oncology ward which is also a 24hr emergency call centre and they told me to go into A&E ? obviously the last place you want to be when you feel rough ? particularly on a Saturday evening! A friend took me and my 2 children to the hospital and they were great ? into triage within 15mins and then kept in a side room to keep me away from further infection. They did loads of tests and then hooked me up on IV anti-biotics. Unfortunately I had a nasty allergic reaction to the dugs which was very scary. By about 10.30pm I had been admitted to the ward where I spent the entire week hooked up to IV anti-biotics, having daily blood tests etc. By the Monday I had been pronounced ?neutropenic? and was put in isolation?.the consultant described my white blood cells as being ?on the floor?. But I?m out now and a little bit wiser ? I think I have learned 2 main lessons:

    Lesson 1: if you feel rough, take your temperature and check that you are not actually ILL. Because it?s been a while since I have felt ?normal? I have put all my ?odd? feelings down to the chemotherapy.

    Lesson 2: Just because you were never ill before and had a great immune system, things are different now. The chemo kills off the cancer cells but also plays havoc with the good ones. You cannot fight things off yourself at the moment, so get yourself to hospital!

    I think that?s sufficient telling off to myself!
    I hope that my experience isn?t too worrying TTT or others going through treatment, but it does show us that we are vulnerable and it can happen, but we can also bounce back.. Interestingly enough, the woman I sat next to at my last chemo also ended up being in hospital at the same time?.coincidence?

    Enough about me!

    Well done TTT for getting through your first treatment ? 5 hours is quite a hefty session and I know exactly what you mean about all the things around chemo as well as the business itself being scary. With the first one I found it was about the reality of it actually happening, the process starting, the start of the marathon. But that?s one to tick off. How many more are you having? There have been lots of good suggestions for dealing with fear and panic attacks - I imagine that time will also help. Agree also about it being very strange not to be getting ready for a new school year?..

    Thanks to everyone for listening/reading. So much of tbis is about attitude ? there are days when you feel down, but the knowledge that so many people care really does help.

    Like you TTT, I wrote all this and then lost it - so frustrating!
  3. tryingtoteach

    tryingtoteach New commenter

    TK - so sorry to hear about your infection. I really hope you are feeling better now. Its difficult because i actually feel ok now and its hard to think that actually, my body is open to all sorts of things and is actually still being battered inside!
    I willd raw on your experience and remember to take care at this time.

    Have you any idea where you caught the infection from? It must have been scry but at least you got through it, which is reassuring for us. Not for you though who actually had to go through it!

    I agree with you that the first chemo session was stressful mainly beacuase I had to face up to it all again and it became so real and so scary. the people are lovely at the hospital, as I'm sure they are everywhere, and they really make it easier. I have 6 months treatment with 2 'sessions' of chemo per month, every other Friday. Some of the anxiety has gone now. I think it was an accumulation of the treatment, the effects and not know ing what to expect. Sill feeling pretty panicky when gong out but I refuse to stay in for the next 6 months! Trying to have a normal life but its difficult, I'm kind of sick of thinking about it all now and fed up of worrying about it all. Just want a little normality which is why i wish i could go back tow ork. I envy those people who work in places that aren't full of little balls of infection on legs (children!!).
  4. i dont normally venture onto this board at all but couldnt ignore this thread. Have no personal experience to help but glad others have. All i can say is good luck to all those facing illness and take strength from all the postives on here.
  5. What a wonderful bunch of posters. If I was going through such a challenging time in my life I would definitely take strength from each and everyone of you. TTT, I have read every post up to this point and will be lurking in the background reading future posts and wishing you only the best in every step of your treatment and recovery. It must make you feel good to know that so many people care. You deserve all of the support. You are a very strong person. Continue to take strength from all of these wonderful posters.
  6. TTT,

    I've tried 4 or 5 times to write this post but each time it's sounded wrong because it's been about me and all the things I've done since I went into remission. Not much help to you though.

    Every thing you've written sounds so much like what I experienced. The panic attacks, the doubts, the fears, the hopes, the wonderful support from hospital staff and loved ones. You are absolutely not alone in this and you will get through it.

    If you want to, you can email me IhateIT@hotmail.co.uk

    I'm thinking about you every day. (And you TKOLLIE - stay strong)
  7. TTT - I am so pleased that you are feeling less panicky. And yes, it is important to get out and do 'normal' things. I think I have learned to listen to my body (previously when I was at work I totally ignored it)and generally go with that. So, if I feel I want to do something I will go ahead, but quite a lot of the time now 'the body says no'. The chemo is definitely cumulative for me and after each time when I have bounced/crawled back, my energy level has been less. But, as with most things, you adapt. You kind of appreciate the small things in life. Highlight of my day today was having a lovely bubbly bath, a little sort-out in the kitchen and ordering a couple of things on-line (including some lovely toothpaste which has helped with the mouth ulcer scenario and a magazine subscription).

    Thank you Bluerose for posting. And Maroon - if you can take any more try the 'mammogram recall thread' - once again, some moving posters and very caring.
    IhateIT - it's brilliant that you are in remission. I heard today about a friend who has just heard that she is clear. I so hope for that day to come. I wonder if you now have a new approach to life?

    My last couple of days before getting my bloods checked and then, if all ok, having my chemo on Thursday. It feels like this cycle has gone nowhere - either spent in or very near to hospital. Hoping for better luck next time (not sure where I got the infection from...my children had been on a camp so maybe they brought a lurgy back with them..who knows!)

    Have just finished reading the Lance Armstrong book which had been highly recommended as being an inspirational read. It was - not that I'm thinking of winning the Tour de France!

    My life has totally changed. I think about things more, I appreciate things. I notice bits of architecture that I've walked past hundreds of times before without noticing them. I find I say sorry a lot more. I got huge pleasure just from being outside in the garden on a sun lounger at midnight watching the Perseids.

    My treatment took 8 months in total and then I had a monthly check up, then one every two months, then every three months, then six months. Now they're annual - I find myself getting a bit twitchy the week before but I know all the signs to look out for and I'm as clean as a whistle.

    Keep battling on. It's really difficult to go through it I know but you'll get there. If someone had told me that the only way to get better would be to run 100 miles a day it would have been easier because I would have been doing something positive towards my cure, no matter how difficult; doing something rather than letting people do things to me and then waiting and waiting and thinking thoughts that I didn't want to think.

    I'll be at work on Thursday sorting out GCSE results but I'll be thinking about you all day. Hope it goes well.
  9. tryingtoteach

    tryingtoteach New commenter

    well, i've got my wig. its not too much differnt to my own hair so should be ok. feel a little silly in it at the moment as i still have all my own hair but have been wearing it in the house to try and get used to it!

    i was supposed to have my second treatment tomorrow but went for my blood test today and have a low white cell count so i have to inject mysef everyday with something. great!

    has anyone else had to do this? i know its quite ommon for treatment to be put off but i really didn't expect it to happen on my first one. feeling pretty low - i'd really prepeaed myslef for tomorrow and now i have to wait until next friday. absolutely terrified of catching soemthing now and am worried it is a bad sign that my blood hasn't recovered. im getting paranoid again. i'd been doing so well!
  10. TTT,

    After I had finished chemo, the ran some scans to prepare me for the radiotherapy. I went to the hospital for the results and they said that one of the radiographers thought I had more lymph nodes that was usual and they wanted to check it out by running the scans again but in more detail. It was the first time I'd been to the hospital on my own (I was getting confident - over-confident perhaps). I really don't know how I got back home. It was so unexpected. As you say, you prepare yourself for something difficult and then, if it doesn't happen, everything gets thrown out and, emotionally, you feel like you're back to square one.
    I was told that the treatment I was being given was exactly the same as they used in the 1970s except that back then it wasn't anything like as successful. That was because they didn't know about all the possible side effects. These days they are ultra cautious. It's the checking, rechecking, postponing, rescheduling of treatment that makes it so much more effective than it used to be. Better to postpone one than to carry on regardless and find that you have to stop after 2 or 3.
    Try to stay positive. I'm conviced that a positive frame of mind can do wonders to help the cure.
    Thinking about you.

  11. lodhi

    lodhi New commenter

    Your blood level has to come to the normal level otherwise treatment will be too much for you. Every thing is a blessing from sky. Be positive. You have a very helpful bunch around you. think positive, have a deep breath, hold your breath, let it go gently. Repeat it few times and let your body be full of postive energy.
  12. tryingtoteach

    tryingtoteach New commenter

    thanks for the positive thoughts and thanks for the email IT.

    feeling a little better - at least i won't feel ill over the bank holiday!!
  13. I hate IT - really interesting to hear your 'new'; approach to life as I can feel myself going in that direction already. We all have times when we feel down and it' s ok to moan (particularly on here, although I think it's less about moaning and more about dealing with fear and the unknown).I think I am generally upbeat because, after all, the idea of all this treatment is to make me better. What does get me down though is the way some other people (without cancer) moan and moan about things that to me (now) seem so unimportant. Sometimes I want to scream 'so what?'. Did you find yourseld making any 'adjustments' to your social circle vis-a-vis those peopel who make you feel good and those who don't?

    How were the GCSE results? Daughter got AS levels last week - she's done weell especially considering this has been a difficult year for her too.

    TTT - what's happening with your treatment? - any sign of the white count going up? I have just returned from my chemo treatment and have to go in for an injection tomorrow: my white bllod cells have recovered, but my red ones are borderline so am now on this injection and daily iron tablets. Better get eating lots of iron-filled foods like giant steaks and spinach too. That's fine as the steroids are making me feel pretty peckish - but still not felt the urge to clean the house from top to bottom. My body says -Friday need feet up on the sofa and watch TV'.

    How is your hair? Has it started thinning yet?

    Happy Bank Holiday everyone!
  14. tryingtoteach

    tryingtoteach New commenter

    TK - Will find out about my white cell count on Wed, will need to inject myself every day until then. Still, feeling pretty good - another week until I feel ill so not too bad! Only the side effect of the injections at the moment - very achy bones due to the bone marrow doing something or other! Actually managing some kind of normality at the moment too. I think I need to see my life as being normal, but with the treatment every few weeks, rather than my life actually BEING the treatment and organising everything around it. Its started to take over. Kind of fed up about thinking and worrying about it now!

    My hair is ok at the moment. Coming out a little but I think it will come out after my next treatment as my head is quite sore and I know you said that happens first. Picked my wig up which actually looks better than my own hair. feel pretty self concious in it but I'm sure that will wear off.

    OH reckons I should cut it off this week while I'm feeling positive and ok and get used to my new look before my treatment. I want to cut it off rather than watch it fall out so I feel like its my decision but my hair is such a big part of me. i'm scared of what I'll look like!! The woman at the hospital gave me an extra wig (not to be mentioned whilst there) which i really liked but now I am so torn as to which one to wear. I don't want to be swapping and changing all the time as i want to look normal. One looks like my hair, similar colour and style, one is a different colour but a nice cut. I don't know which to choose, I feel more comfortable with the one like mine but think the other suits me more! It seems silly me fretting about what seems such an unimportant decision!
  15. Tryingtoteach - it's quite normal with treatment for lymphoma to affect your blood counts. I had a few treatments delayed and had to inject the GCSF - considering I hate needles I got quite good at it. Yes, it does make your bones ache.

    Yesterday I had my first treatment of monoclonal antibody therapy (Rituximab). I've been after it for years but been turned down on funding grounds. Keep fingers crossed it works, as my scan straight after the end of my last chemo showed progression already.

    Re. the wigs, I'm sure when the time comes you'll decide on one. I'd go for the one that makes you feel best. Do you know you can also have a free make-up session and come away with lots of free goodies? Ask the specialist nurse next hospital visit. I think it's called something like 'Looking good feeling good'
  16. tryingtoteach

    tryingtoteach New commenter

    ow ow ow ow ow!!!!!!!

    those injections are making my bones really uncomfortable!! after the first one my thigh bones really ached but walking seemed to help so we went for a nice walk by a canal. had my second injection last night and within an hour the bottom of my back was really painful, almost like a spasm. pain killers and a hot water bottle took the edge off as did lying on the floor - but OW! i don't mind the needles but i'm finding it really hard to sit still as it aches and hurts with the presure. my house is spotless! OH thinks its great as i've got loads of jobs done!! theres got to be some perks i suppose.

    joli - did you find that your back, i suppose its my pelvis really, hurt a lot? does it get worse with each injection? i can kind of cope with this but any more and i'll be on the floor!! a little worried the next injection will leave me crippled!! i suppose its a good sign that its working.

    hope your treatment goes ok. what will it involve? i don't really know anything about that. it amazes me how many different ways of treating somethign there is and how many alternatives you can have. can't fault the docs on that, even if it is all a pain in the bum - literally!

  17. Yes, my pelvis and back ached, as did my sternum and cranium, which was disconcerting. I took painkillers and hot water bottles, unfortunately I didn't get the urge to clean the house! I can't remember if it it gets worse with each injection - sorry.
  18. tryingtoteach

    tryingtoteach New commenter

    well,it didn't get worse with the next few injections but hasn't got much better. at least the pain killers work!
  19. TTT

    How did you get on on Friday?


    I've heard really good things about Rituximab - glad you're getting it.

  20. tryingtoteach

    tryingtoteach New commenter

    hi everyone,

    hope you are all doing ok?


    friday went ok, thanks. the side effects weren't as bad this time. dr gave me some extra tablets to stop me feeling as sick. just felt tired and off colour really. my mouth, throat and ears have been really sore for the last few days and everything just seems such hard work! just went to the shop and was there 10 minutes but felt out of breath and shattered!!

    my hair has also started to come out which is really getting to me. still looks ok but when i washed it i had a really good cry as it was definetly coming out.

    its so frustrating not being able to do what you're used to. i'm sck of seeing the same 4 walls. OH back at uni next week, starting with a week in wales so i'll be on my own for a full week! I think i might go mad!! i know the breathlessness and tired ness wille ase over the next week so will have a 'normal' week hopefully before next chemo.

    what did you alld o to keep you occupied while off work?

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