3rd Jan

I can see it, looming, I'm having bloods taken on New Year's Eve and then chemo starts on Jan 3rd and I'm terrified to put it mildly. I've heard so many horror stories lately, one of the posts mentioned really low white cell count so their wife is ill, there was someone who caught an infection at the chemo suite, and the general who died after his fight with cancer was won and then had complications from pneumonia I assume was because his resistance was low is making me scared. Hubby won't talk about it, says I know what I have to do and to look on the bright side, I might have no side effects, whcih would be great. With the Norovirus going around too I'm not confident about going to the hospital which on their answerphone warns people not to go there unnecessarily because of contamination.

My son's girlfriend is five weeks pregnant and I felt a real pang that I won't have another baby, even though I'm 46, why would I have another baby. It was so strange. Maybe it's not having the choice I don't know, can you feel broody when your oestrogen levels have been quarterized.

Doc gave me calcium and vit D tabs, you have to chew them - yuk! Will wait til I see nurse on Monday before starting them, he said if I want to be tested for TREM2 it's a private test not available on the NHS, which seems silly considering the promotion for recognising Alzheimers, he had to search it first as he hadn't heard of it, so maybe awareness raising time for the health service, prevention over cure, well not cure actually, but being able to delay the onset of dementia must be good, especially as the chances of early onset increase with a hysterectomy pre-menopause.

I hope you all had a great Christmas.

LA

14 Replies

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  • Hi LA, I can understand you looking at the possibles and 'what ifs', but try to follow your husbands advice and try to think that it will go as well as it possibly can. I know it's not easy and you're bound to be nervous, facing the unknown. However, the medical team wouldn't be starting chemo if they thought you were going to be in danger. Take along a sanitising hand gel, using it whenever you have been in direct contact with any handles or surfaces in the hospital, also have a cloth hankie at the ready, to use as a face mask if you come across anyone with an obvious infection, all the sensible precautions you will probably have thought of.

    As for loss of fertility, it's not easy. I was disappointed when my periods came, regular as clockwork, every month from the age of 30 to the day before I was admitted to hospital at the age of 52. Never to be for me, but I try not to dwell on what I can't have, when what I can have is so great. I like the hint about calcium and vitD. I had read something too. Is it now being talked about by mainstream doctors? Must be something in it! What is TREM2? I haven't heard of that one.

    It won't be long until the unknown becomes the known and you'll feel so much better then. Until then, pass your time wisely, not too much googling about chemo or infections or survival rates ;-) We all believe in your ability to face up to this thing. You'll soon be on the up again, I am sure. Big Hugs to you

    Love Wendy xx

  • Dear LA,

    Try not to think about what "might" happen, as it is just that "might" which probably means it won't, and consider the alternative to do nothing is worse... at least you are giving it your best shot... and you are in good hands...from one who has been through chemo twice and lost my hair etc twice...I never as much as had a cold or sniffle when either time I was on chemo...if given the option over again I would still go for it...I think the time to worry is when they have no more treatment to offer...sending you best wishes and loads of love x G x :-)

  • Dear Lily Ann -- you are letting your mind get into a (totally understandable) whirl again. The MOST important thing you can do at this time is deal with the first, most vital challenge ahead which is your chemo. With this we all face the "what if we get ill / delayed through lowered immunity" fear, but it is far easier to manage than it sounds at first. It does rather conjure up visions of hermetically sealing oneself away. It actually takes just sensible precautions - but I agree with you on norovirus that it is not one you want. So extra hand washing, extra gel, etc - you be the one who us clean. After its all underway just make sure visitors that come along have just thought about things first (I nearly had one who had a child with weeping chicken pox - it came up quite accidentally on the phone before she left her place... So I had the chance to say not to! But she had NOT thought - you need to make sure others take care too). I can't speak to the other bit as no frame of reference...I'd just say try to face one spectre at a time. Easier said than done, I know.

    Love Sue xxx

    PS - you will get some side effects... I don't think anyone escapes completely. But they often are very manageable. I totally escaped ANY nausea, for example - was lucky!

  • Dear lily-anne,

    I know how you feel and will think of you on Jan 3rd as I am having my pre op assessment for breast mutilation then!

    Just a few practical suggestions to help you to cope with chemo. Ask for anti emetics before the chemo starts and take them even if you only feel a bit queasy. I took domperidone and only had one day of nausea.

    Take high level anti infection precautions! Replace all soap with anti bacterial handwash and have antibacterial gel around the place. ( low white cell count is a symptom of impaired imune system) at this time of year avoid cinema, theatre, public transport (enclosed spaces packed with prople that are closed in and you don't move) the risk of infection is high. Be really unwelcoming and refuse entry to anyone who " just has a cold" or a "touch of gyppy tummy" consequences for anyone on chemo can be serious. If you need A&E make sure you make loud noises about infection risk! The same goes for walk in centres and Dr's surgery. Any small cuts apply rapid healing plasters. Those containing silver are especially good at preventing infection.

    Start the day with a cup of lemon & ginger tea and a couple of dry digestive biscuits (helps prevent nausea). The tiredness will kick in around day 3 after chemo! Do not fight it! Go to bed with a book, the radio, your iPod or whatever you choose and let yourself sleep.

    Have bowls of small nibbles that you like to hand. I could not eat much. I kept bowls of fresh pineapple, cubes of cheese, midget gems, chocolate (to keep the calorie intake over 500 a day to ensure metabolism.

    Those calcium tabs you chew are awful. I take Boots calcium with vits D & K which you just swallow. During my last lot of chemo I was given magnesium as well! I do not take stuff I have to scrape off my teeth! Chemo does enough awful stuff to taste and smell as it is. I went off coffee, tea and wine so I bought Bottle Green cordials and cheap supermarket fizzy water and made my own weak fizzy drinks. Just enough to clean the palette but not as highly flavoured as commercial ones.

    Finally it is nowhere near as bad as your imagination will be making it. If you do not have anyone to sit with you and chat during chemo try a few audio books, with earphones and an iPod you do not have the problem of trying to manage a book and not dislodge the canula.

    If you think that being disappointed in no longer being able to have babies at 47 is odd I felt exactly the same at 69 and I had been through the menopause 15 years before! I am now dreading mammary mutilation and defeminisation and, at 72, I have lived alone for 14 years and celibate and relationship free for 6! There is no accounting for emotion! I have high testosterone levels (translate that as "bossy cow") and I still fel all the same irrational emotions!

    Thinking of you and sending positive thoughts for Thursday!

    Love

    Margaret! xxxxxxxxxxx

  • Great advice from you Margaret!

    Oh those magnesium horse pills! Am on them at the moment... 2cm across, are they kidding? Thank goodness they are kind of sweet so you can break them up!

    I found that my GP had miraculous change of attitude here - they called and said don't come to the surgery, call us and we will come to you! Suspect this may be impacted by resources locally but worth an ask, certainly, Lily-Ann.

  • I absolutely endorse Margaret J's advice and comments as well as the others. It is not a pleasant experience but not as awful as you imagine and if you follow the advice you are given at the clinic, especially in reference to nausea, most of the after effects are avoidable. To just accept you are going to have to spend a few days in bed when after effects hint that they are going to kick in will make it all much easier to tolerate. If you can summon up as positive an attitude as possible, it really does help, not only psychologically but also physically, I am sure.

    My advice with ref. to infection would be, added to the recommendations above, is to be really pernickety and insist that any visitors wash their hands on arrival and use antibacterial gel.

    Lots of good wishes for your treatment - I hope it will be much less traumatic than you anticipate. Lill

  • Dear Lily-Anne

    You've already had loads of good advice. I was just over half way through 6 cycles of carboplatin only this time last year. Yes there were problems with my blood count but it only resulted in the course finishing 2 weeks later than expected. I took sensible precautions against infection but wasn't paranoid and never caught anything. You'll be surprised at how quickly the chemo sessions become fairly normal, routine and boring.

    Wishing you well for next week.

    Love

    Linda xx

  • Dear Lily-Anne

    I sense some last-minute panic moments. However the choice you've made to have chemotherapy is surely the right one. You've opted to have carbo-platin only so the side-effects are minimised. No hair loss to start with, no worry about neuropathy. Carbo-platin can make you nauseous but apparently this is linked to whether or not women suffered with morning sickness during pregnancy. Generally they can manage the sickness with anti-nausea tablets you can administer yourself, and the steroids. The downside of carbo-platin alone is that the dose is generally higher than a mix of Carbo-platin and Taxol and it does tend to cause lowered blood cell counts.

    You really shouldn't worry too much about what you can't do anything about. The serenity prayer gives good advice ....

    God grant me the serenity

    to accept the things I cannot change;

    courage to change the things I can;

    and wisdom to know the difference.

    Living one day at a time;

    Enjoying one moment at a time;

    Accepting hardships as the pathway to peace;

    Taking, as He did, this sinful world

    as it is, not as I would have it;

    Trusting that He will make all things right

    if I surrender to His Will;

    That I may be reasonably happy in this life

    and supremely happy with Him

    Forever in the next.

    I'm not a particularly religious person but I've always treasured these wise words as being more helpful than anything else. My own take on the prayer can be summed 'Why spoil today worrying about tomorrow'.

    If it helps write a list of everything that worries you and then cross through the things you can't change. Hopefully this will start you out on a better course for next week. I shall be thinking of you on 3rd. It really will be fine.

    Love Annie

  • Dear Lily-Anne

    So many of us have felt very frightened, just like you. The thought of entering into the unknown feels unreal and full of uncertainties.

    However, in many ways, the thought of under-going chemotherapy is actually worse than doing it. This probably sounds very flippant but I speak from experience as I felt terrified. You will find that once the treatment is underway, you are no longer dealing with the unknown but will find that the chemotherapy department has a surprisingly calm atmosphere and the nurses are very supportive and understanding.

    Importantly, the nurses are there to advise and will help you deal with any problems as they arise. The most common problem is constipation, a side effect of Ondansetron which is a drug used to combat nausea. Please make sure that you take MOVICOL to deal with constipation if it occurs. After pelvic surgery, constipation is very uncomfortable.

    You have received plenty of advice about avoiding infection in previous posts. All you can do is to take sensible precautions.

    Wishing you well.

    Best wishes

    Isabelle

  • Dear Lily-Anne

    The worries you feel are quite normal. I think we all go through them, it is the fear of the unknown. I think it is this that makes the first chemo the worst. What I did was to keep a diary of how I felt, every little detail, after each chemo. This was more help for the later chemos, because I could refer back and see that it was the same each time! I did start to feel much better after chemo 2 if its any help.

    I got through both rounds of chemos without any delays, even managing to fight off an infection without any medication. The thing to watch is your temperature, if it goes above 37.5 phone your oncology emergency line for advice. As with many things, your age is in your favour. You, like me, are young and so much stronger than you realise!

    Something I haven't seen mentioned is that I was warned that I would be toxic for 2 days after chemo, it leaches out through your skin, so to be careful around other people, especially if you need to handle food. I made sure I washed my hands even more often than normal! I was also warned to use condoms until 4weeks after chemo had finished to prevent any risk of infection that way.....not that I had much energy of inclination just after chemo!

    Good luck for the 3rd, I feel sure it will not be as bad as you think

    Love Chris

  • I forgot to mention I too keep a diary! Still do!

  • Thank you Ladies for taking so much time to reply.I will be thinking of you on the 3rd too Margaret, my sister in law had a masectomy and you wouldn't know to look at her. She had reconstruction surgery using tissue from her thighs.

    Feeling a bit sick, going to have a drink to see in the new year and then hide the wine bottles. although I guess form what you say I won't want it anyway. I was hoping to go back to work, but now I'm worried I might catch something. Pre OC, I wouldn't have called myself either paranoid nor a worrier, reality check I guess.

    The TREM2 test is to identify whether you are suseptible to Alzheimers, as now my ovaries have been removed my risk of early onset Dementia increases, odds seem to not be on my side, they said it was a 90% chance I wouldn't have cancer and I did, so my interest in stats has diminished a little.

    I have the KIndle hubby bought me for Christmas and have downloaded some books, he will be with me for my first treatment, just hope I can walk through the hospital door, bloods etc tomorrow - eek!!!

    Happy New Year

    LA xx

  • Hi Lily Anne

    Just to say the very best of luck for the 3rd, I'm sure that it won't be half as bad as you think and you have all of us to check in with if / when you need us. I hope that today goes well.

    January 3rd is my sister's significant birthday. She ( and I ) overcame an extrenmely difficult start in life and is now a wonderful person with a great life including a highly successful professional career. You will get through this.

    You are not a panicker or a worrier , you have just had a terrible shock and a massive trauma. The real Lily Anne will be back before you know it , but wiser as a result of her experiences !

    Love

    Charlie xxx

  • There is definitely something good about he 3rd! My husband and I got engaged on the 3rd Jan.... 22 years ago! It's also our daughter's birthday. With so many good things having happened on hat date, I hope o

    It's the beginning of good things for you too!

    Love and best wishes

    Chris

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