Latest on my wife -any advice welcomed please

Hi,

I thought to let you know that my wife, who had OCS and had the op 4 weeks ago was readmitted into hospital with an infection. The doctors say that they cannot start the chem until the infection is gone (carboplatin and paclitaxol for 6 sessions). However, my wife has also developed a blood clot (which is why there is infection) as a result of the anti-clotting injections she needs to still take 5 weeks after the op.

A CT was done a few days ago which showed that she has developed nodules on her colon. I am afraid that the cancer is back before the chem has even started within 4 weeks of the debulking surgery she underwent.

I am scared that she will go in this vicious cycle of infection/lack of strength because of low appetite and the chem will be delayed further while the disease comes back.

Does anyone have any advice? has anyone had the same experuience?

It sounds like this OCS is a very aggressive disease that just keeps growing.

I still keeping taking home cooked food for her to eat to gain her strength but every step my wife takes forward, it is followed by 2 steps back again and I feel she is suffering as a consequence of doctors medicines and just not going forward.

I would really appreciate any comments on your experience and any advice you can offer, as I feel I am completely helpless and cant do anything.

Tnx.

14 Replies

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  • Hi Pamnani

    First of all, so sorry you and your wife are going through this. I know it must be a very worrying and stressful time for you. I don't know that I have a lot of advice but wanted to say regarding the blood clots - I was told from my scan I had these and my Oncologists team said this is very common with ovarian cancer and as long as you take the injections shouldn't be a cause for concern. I have to take them for six months. Usually antibiotics will sort out an infection and am sure as soon as they can possibly start the chemo they will.

    With regard to appetite, mine was very poor at the beginning too but they put me on steroids and almost overnight my appetite improved and I was able to eat much more successfully and felt much perkier. So, just wanted to say that some medicines can be very effective and really help.

    I understand you are very anxious and feel helpless but hopefully the infection will soon clear up and the chemo can commence. Wishing you strength and hope and that you both get through this!

    All the very best to you

    Mary

  • Dear Mary,

    thank you for your words of comfort. It is nice to hear that there will be light at the end of this ever darkening tunnel!

    And to hear that there are others out there who have gone thru similar things as my wife is at present.

  • Don't worry about the dark tunnel.... We have torches and are here to keep you company all the way.

    Hope your wife is feeling stronger soon and able to continue this roller coaster ride. Just take one step at a time and before you know it you'll be at the finish line. Don't forget those 'naughty treats' when you're taking food in ;-)

    Best wishes

    L4W

  • You're so welcome, Pamnani. I'm so glad if some of those words brought comfort. Am sure there will be others offering better advice than I but for sure, others have been through tough times which have passed and better times have come through. Hang in there!

    Mary x

  • Blood clots are a possibility after abdominal surgery which is why we are given the anti-clotting injections and cancer itself also predisposes us to blood clots. I expect your wife's team are using antibiotics to clear the infection she has developed and can then start the chemo.

    I'm sorry your wife has lost her appetite, that didn't happen to me. I guess the addition worry about the blood clot and also the infection doesn't help. Maybe any food you know she likes, even chocolate.

    It's a hard time for you both but you will find the strength to get through it.

  • Hi Pamnani

    I would agree with what Mary has already said..your wife's team will be planning carefully but surely to get her over the op and on to the chemo but they can't take risks with clots or infection.. In the long run it will mean a better run at chemo. Don't forget that debulking takes out the large areas and allows the chemo to work more effectively to mop up the bits they didn't get at surgery.

    You are doing the right thing in tempting her to eat and keeping her spirits up.. that is being useful as being in hospital is boring and isolating.

    Lyndallxx

  • Hi P,

    It is of course a very worrying time for you, but please be encouraged that none of what you have described is particularly unusual. My wife had many problems after the surgery and it took a long while for her to recover her strength. But recover she did and eventually was able to undergo chemo. This disease throws up many challenges and while at present it may seem like you will never get through, you will. You will find the strength, and together deal with each issue as it arises. It is, I know, a steep learning curve, but you are in the right place here because there is so much knowledge and support available from these extraordinary people.

    I remember feeling so useless when my Angie couldn't/wouldn't eat much. I tried allsorts, but her appetite was at a near zero. Eventually, I was advised to get her some vitamin shakes and after a few tries with different things she settled with banana milkshake, Branded as Build-Up. These shakes are packed full of essential vitimins and minerals and while they are no substitute for a good diet, they did help Angie to get back up to strength. They are available in the pharmacies, but also available on prescription. Maybe have a chat with the GP, Onc or CNS about a referral to a nutritionist?

    Oh, before I go... Angie's oncologist told her to ignore everything she had been told about diet pre cancer. His words were, "Whatever a doctor would normally say is bad for you is now good for you!" Angie thought this was great. No dinners and stuff but the sweets, chocolate and cream cakes etc were welcome. And believe me she made the most of it lol.

    Best wishes to you both, and I hope your dear wife is soon feeling well.

    Andy

  • Hi Pamnani. I dont have any advice at this time but I do want to send you both a big virtual hug and send you my very best wishes xx Kathy xx

  • HI P, sorry your wife is ill at present but this too will pass. The other ladies have give you good advice. Your wifes oncology team will want her to get better so they will look after her and if you are worried at all, do speak with them or the nurses on her ward. The Milk shakes are a good idea and any thing your wife fancies to eat it doesnt matter what it is just give it to her. If she has an infection and on antibiotics she may be unwell until they start to work. It takes time, it is of course worrying for you but every day you will see her get better,

  • thank you everyone for being so helpful and laying my fears to rest. I find myself walking through a jungle of new things everyday, and being new is also scary.

    Today my wife started to eat again although every time she ate food (whatever she could manage) she became very exhausted.

    She has also developed swelling in her legs as a result of lymph drainage (because they also removed some lymph nodes during the debulking hysterectomy).

    Does anyone have any ideas how to resolve this?

    Will it eventually resolve itself?

    My wife does find it difficult to move around once they swell up.

    Would massaging them help reduce the swelling and will it go in time?

    Again i feel we are racing against time as she cannot start her treatment until she has the infection under control and strong enough, but with this new complication I feel another barrier is placed to get over before that first chemo can start, and we have been told that the cancer may have come back (as nodules) as seen on her colon in a CT scan last week (4 weeks after her surgery)!! Every time we think we see the light, we are back in the dark.

    Has anyone else had legs swelling after the op and does this go away eventually?

    Many thanks in advance to all of you kind people.

  • I am sorry to hear your wife is unwell at the moment but she is in the best place to get sorted out.

    I too developed an infection and bleeding after surgery which set everything back a bit. I ended up going back into surgery for them to clear the infected areas and then iv antibiotics. I was very unwell and could only manage to eat tiny amounts. My family would bring in things I fancied which helped but to be honest I had no interest in food at the time. I did loose weight but once I began to feel better my appetite return and so did the weight!

    I too had patches of cancer cells on my bowel and had to wait for five months before I returned to chemo. I had carbo, taxol and Avastin which I finished in February.

    Now 22 months after my infection I am not currently on treatment and there is no sign of active disease on my CT scans and the chemo mopped up the patches on my boweI. I still have some physical limitations around fatigue, mobility and energy but am for the most part well and thoroughly enjoying my "new normal". My husband and I only yesterday came back from a wonderful weekend in the Lakes!

    My fantastic husband has been my rock throughout all of this. He has always been there and tells me that whatever happens we will manage. His quiet reassurance means everything and I am sure your wife feels just the same about you.

    I am sure your wife will make a good recovery with time and your loving support. Try not to get too worried about how much she is eating right now as I am sure this will soon improve once she starts to feel better. I was told that keeping my fluids up was more important than food at these times. Also try not to worry too much about loosing time. Having to delay chemo does not necessarily mean that the response to treatment will be poorer.

    Sending you lots of love

    Juliax

  • thank you so much Julia. There is light at the end of this horrible tunnel and I take my hat off to all the ladies going through this right now.

    My wife is still feeling very weak but eats reluctantly. The doctors are having their MDM today to decide what to do next.

    In the meantime, my wife has developed leg swellings and an ultra sound taken this morning cleared any danger of a vein blood clot, so not sure what else it could be. Doctors think it could be: low protein in body or lymph drainage.

    Also, were you also taking blood thinning injections and did you ever take any supplement food (super foods) during this time, e.g. tumeric?

  • Hi

    I did not have lower limb swelling so cannot comment on this I am afraid. I did though have daily blood thinning injections post operative. I was discharged with these too and self injected at home. I am not sure how long I had to continue with these but it seemed a longggggggg!!! time.

    Prior to leaving hospital I was assessed by an Occupational Therapist who defined my need for help on discharged and arranged for the appropriate support. This included care from social services a couple of times a day to help with washing, dressing and toileting. This took some getting used to but it was really a great help and also protected my family from suddenly becoming my carers. I also had daily visits from my district nurse who again was a wonderful support. Plus I had equipment to make things easier at home and help with accessing financial help.

    All this made mine and my husbands lives much easier at a very difficult time. It certainly meant we felt much less alone. This sort of help is available in every hospital. Unfortunately it can be overlooked when all the medical stuff is going on so be sure and ask for an assessment.

    If I can help please let me know.

    Juliax

  • Hi,

    I have just come back from hospital seeing my wife after a long day with her. I am so worried because i read that the longer her chemo gets delayed, the less chance of survival she has. Her infection is under control but she now cannot eat and she is so weak that I am scared she will not get onto the chemo in time. It is now 4 weeks after the surgery, and the second and third week after the surgery she was doing very well in her recovery, but progressively less as the infection set in. Now that she is in hospital again, her condition has worsened and she is so thin that I worry she will ever start the chemo.

    I read somewhere in an article that the best chance for longterm survival is to have chemo within 25 days of a debulking surgery. My wife is now into her 4th week and chemo cannot start until her body is strong enough to take it.

    Just when she was eating at the start of this week, within 3 days she lost complete appetite, is very weak and can barely walk. I take her fopr a few walks every day to help her digestive track keep moving, and whatever little she eats she then needs to sleep for a long while.

    The doctors say that it is a combination of the blood clot she developed and the disease starting to come back on her colon, which is causing her pain, discomfort and loss of appetite and weakness. Everyday in the morning when i drive to the hospital to see her, i cross my fingers in the hope that she has improved from the previous day, but it goes the other way.

    I would be interested to hear others experiences.

    thank you so much!

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