Help and advice?

Hello, I have made contact for my wife and she will hopefully be able to use the network. She has started chemo and has stage 3 OVC. We had no warnings and it was a sudden case of bloating 3 weeks ago. She has been dealt with swiftly though with the GP sending her to the hospital who did all the tests and scans and sent her to a Gynae-oncologist. Couple of questions. 1) They want to do Chemo first before surgery - is this becoming the norm? 2) She was ok with the first days Chemo, but after 4 days she is very tired and has aches and stomach pain and went to bed yesterday. The out of hrs GP gave her some oral morphine overnight to take. She tried to get up to shower this morning but blacked out and bruised her back. I put her back in bed and checked her temperature etc. Have others experienced this sort of tiredness and pain?

32 Replies

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  • Hi Sue and H,

    Welcome to the club no one wants to join..I am sorry with what you are going through...I had an operation first but there are quite a few people on here that is having chemo first I am sure you will hear from them soon. you will get a lot of support on here and if you need help you can always ring the Ovacome helpline and speak to their nurse "Ruth Payne" she will put your mind at rest tel 0845 371 0554 (office hours) but they are not open Monday as it's bank holiday...it is the norm to be tired etc. my thoughts and prayers are with you love x G x

  • Thank you Gwyn, It is so hard to know how to help the person you love and having to watch them so ill. I'm hoping this network can help us. Trouble with weekends is the whole medical system seems to go onto a go slow and this is a long weekend with a bank holiday as well. My wife has been the sort of person who was never ill with anything until this!

  • I was the same as your wife,fit and well then in may I got Primary peritoneal cancer ( treated the same as ovarian cancer) I have had 4 rounds of chemo and I'm having my operation in September then 2 more rounds of chemo. It does make you very tired I am off this week from work as I had chemo on Wednesday 22ND August. It also gives you aches and pains in your legs chest and tummy. Just a word the more you have the more tired you get. There is light at the end of the tunnel just be caring and patient with your wife. Life will be different for a while but you will get through it together. Stay close and if you have any concerns also put it on ovacome someone will always have the answer . Love and Hugs to you Both Babs x x x

  • Thank you, good advice. We are very close and I am doing my best round the clock for her. Trouble is that as carers we have to try and guess what we should do for any given situation and don't have medical expertise to inform the decisions. Anyway I can ring a doctor if I think things are getting worse. When she blacked out and fell over she banged her back and that is the main cause of pain at the moment but it hasn't got worse and she's had a bit more morphine. She had no sleep last night so hoping she gets some tonight. Sorry to burden people with these problems.

  • Hi, sorry to hear your wife has joined our club. I had 3 rounds of chemo, followed by op, followed by 3 more rounds of chemo. The doctor explained that they wanted to try to shrink the cancer before operating to make everything easier to remove.

    I also found that I built up to a really rough day about 5 days after chemo. The first time I was repeatedly sick, and they had to send out a doctor to give me an anti sickness injection. They changed my meds a few days later, which worked much better. In all my cycles, it was the same day that was worse, though once the anti sickness tablets were suiting me, I was like a zombie all day, and slept a lot. I used to get odd aches in my legs too.

    Have you considered getting a shower stool? Last year I borrowed one and a toilet surround from my Mum. It was really useful, so much so that I have bought my own stool in preparation for the chemo.

    If its any help, I found I felt a lot better as the cycles progressed, im hoping for the same result this time round.

    Love Chris

  • Hiya

    I'm so sorry to hear about your wife. As Gwyn says this is the club no-one wants to join but when you do you'll get lots of support and advice.

    I was told it was normal practice nowadays to have 3/4 chemos, surgery and then more chemo to 'mop up' anything they couldn't get with the surgery. It's the treatment I had in 2010.

    The chemo can affect some people pretty badly and yet others, like Babs, are able to keep on working - she's amazing! Speaking for myself, I was totally exhausted and very sick from day one the first time I had chemo. I also passed out a few times, once memorably in a restuarant after I had decided I was well enough to go out. However, my doctor kept trying different anti-sickness drugs until I got one which suited me and once that passed, it was so much easier to cope with. I suffered quite badly with aching joints for a few days after chemo, also erratic sleep patterns and generally feeling very unwell.

    The best advice I got was 'listen to your body' because everyone is different. I was also told 'if you don't tell us about it, we can't help you'. This is so true, so many of us don't want to say too much because we feel we're moaning and complaining. However, I think it's the one situation when your oncology team are happy to have you acting like a hypochondriac and telling them everything!

    It's very early days for you both at the moment - I'm sure you'll both still be in shock as everything has happened so quickly for you. I hope things start to get a bit easier over the coming weeks and keep posting and asking questions on here, I've had such wonderful help, support and advice.

    Best wishes.

    Love Cathy xx

  • Hi Sorry to hear about your wife . Again welcome to the club no one wants to join but hopefully yourself and wife will find it a great support . It is now i think more common to have 3 lots chemotherapy/surgery and then final chemotherapy . Joint pain is common with certain chemotherapy drugs and i would imagine your wife is having paclitaxel and carboplatin . It is usually the paclitaxel that gives the joint pain . The side effects usually start day 3/4 after the chemotherapy but and can last a couple/few days and then should begin to feel better . I would let the nurses know everything at the next visit because medication can be changed to make this hard treatment easier . Keep an eye on the temperature as if elavated need to phone the hospital . Eat when she feels like it sometimes little but often helps . Try to stay mobile around the house . If back is bruised not a hot bath but maybe an ice pack . Sometimes it helps over the next few days to keep a note pad handy and jot down any questions you have for the specialist as they come to mind hopefully that way you do not leave the next appt with questions you had wanted to ask not being addressed , It is very early days and so much must be going through your heads . It is an emotional roller coaster and sometimes you feel like shouting stop . Please do not worry about posting any questions our worries here as we are all here to help and support each other

    Ally

  • Hi

    So sorry you are both having to go through this, it does turn life upside down, As the others have said, everyone seems to react differently to chemo - I was ok for the first one and then inreasingly exhausted to the point that loading the washing machine was a huge effort. The only thing I can add to what the others have said, and it is a cliche but important, is that make sure that you, as her carer, don't neglect yourself. My husband has been a tower of strength to me but as soon as I finished chemo he put his back out and got a nasty virus - I'm sure it was the strain of the last months that had pulled him down. If you are not sure what to do in any situation I would always err on the side of caution and phone the doctors. - that is what they are there for.

    Good luck to you both

    Monique

  • Just got home at 5.35am after many hours at A&E where my wife still is. Basically the Cancer Centre at Glan Clwyd, North Wales was not helpful and kept referring us to the out of hours GP. He came twice and then referred my wife to A&E. A&E asked the Cancer Centre to admit her but they said they had no beds. I rang the Cancer Centre to check and got same response. As the hospital couldn't find any other beds in any ward we have spent hours in A&E, although A&E have been great trying to help us and managed to put her in a side room. She is in a lot of pain, mainly in her back and they seem to think it was from the fall when she blacked out. A&E say this situation keeps happening and they can't understand what it takes to get the Cancer Centre to admit people, especially at weekends. They say we shouldn't have to be waiting at A&E when we are having to deal with cancer. It feels like Depts pass the buck between each other. It's enough having to deal with what has been chucked at us with this diagnosis never mind having to fight a system as well.

  • I'm appalled to read your post and to see that you've been passed from one place to another over the weekend. It's outrageous that Sue has been kept in A & E which is about the worst place to help as it's always so noisy and busy there and they are unlikely to have an oncologist on call.

    It sounds as though she should be in your local Cancer Centre who could take a look at her chemotherapy prescription and the drugs they are administering to minimise side-effets - steroids and anti-nausea tablets in my case.

    I'm not a medical expert - far from it - but I would venture one comment which you might like to raise with your prescribing oncologist. By chance I only had carbo-platin which doesn't have much in the way of side-effects. I just wondered whether you could ask for a Taxol holiday for a couple of sessions to see if this helps. My hospital suggested starting the first 2 sessions with carbo-platin only and then adding Taxol. As it happens Carbo-Platin was working so well they didn't add the second chemotherapy so I got off lightly. It seems to me that there is scope for being a bit more creative with this chemo stuff that most hospitals don't even start to consider.

    Another thing that comes to mind is reviewing the dose of chemotherapy that has been prescribed. This dosage depends on kidney function and your wife will have had a nuclear kidney test beforehand. Again I'm coming from a perspective of a complete amateur but I just wonder whether you could ask about the dose your wife is receiving and, given the severity of the side-effects, whether that should be reconsidered.

    I've read a lot of accounts on these pages and I don't feel it's reasonable that your wife is suffering so badly so early on. What a dreadful worry for you. I don't suppose she's able to think for herself going through all of this. I hope everything seems brighter for you today now the hospitals are back up to full strength after the bank holiday - not that this is an acceptable situation. I'd certainly ring Ovacome today if you can as they're so knowledgeable and supportive.

    Sending a huge hug to you and Sue. I feel as if we should know your name - didn't like to start my message 'Dear Sue' ... xxx Annie

  • Good morning, I hope everything gets sorted out quickly today and your wife gets the right treatment in the right place.

    My Mum was diagnosed with Stage 4 OC just over a year ago but having had IBS for years any early symptoms were masked. She did go to her GP after reading about OC symptoms and awareness in a magazine and was thankfully pushy with her GP to get a referral.

    I am my Mum's primary carer and a year ago OC was new to me - this site is also great for those supporting family and friends so both you and your wife will get a tremendous amount of support here.

    Mum had 4 chemo cycles pre-op and 3 post. What I did at the start of Mum's chemo was to buy a page a day diary and on each day write down how she felt, what meds she took, what impact they had and whether she felt better or worse each night. This was invaluable for later cycles as it helped us to improve Mum's care and also "predicted" the good and bad days. Mum also has a bean bag she heats in the microwave which helped with sore joints.

    I keep up to date with this forum for new ideas and ask questions when I need to.

    Hope this helps,

    Rob

  • I keep a diary too! Nothing fancy just an A5 notebook! I am on number 15! It is very useful when I go to my reviews!

  • Dear Rob

    I think the idea of a cancer journal is a really good one because you can see if there's a pattern emerging. I'm sure this will help Sue and her husband to feel as though they can tackle the problems in a systematic way. I found my daughter and husband were much more aware of my 'good' and 'bad' days so I often referred to them before entering notes in the journal.

    How is your mum getting on these days? I haven't seen any posts from you but with such a busy site it may be you've posted up and I just haven't found it. x Annie

  • Hi Sue and H.. You must never ever think you are burdening anyone on this site no one will ever think that. People on here are fantastic and i find that no matter what the problem they are all always here to help me..

    I had surgery then chemo but it seems there are lots of different ways to fight this bugger.. To a certain degree you have to put your faith in those that are treating your wife. But they are the experts and they will get her through this..

    Your wife is very luck to have you keep supporting her she will get more tired the more chemo she has but im sure you will carry her well. I have lacked that kind of support as i tried to work through out my chemo because i am the only bread winner in our house and i think that because i carried on working my partner thought i must be fine ( i wasnt) And now with the after effects i get very little support. So your wife is very very lucky Look after her well.

    And dont forget all the ladies on here are fantastic no matter what the problem someone will always advise you.

    Take care lots of love

    Suzanne. xxx

  • Oh Suzanne, can you leave these pages and our comments open for your partner to read. I hope it's not an impertinent question but is he looking to get work to help support you. Perhaps he needs a job description in the house so he has a list of duties and ways of supporting you. I wish I could help. xxx Annie

  • Hi Both,

    sorry you have to be here.

    Unfortunatly the NHS / health care is no longer joined up, so it can get very hard work being ill.

    I believe that it can be 'normal' to have the chemo prior to surgery, in order to make the tumour/s easier to operate on, as it shrinks them to a more manageable level- saying that I had my op after presenting myself at A&E.

    I too blacked out, both at home and in hospital after my most recent op, it was due to extremely low blood pressure ( they called it a vaso vagal reaction), and apparantly the body can reduce the blood pressure as a stress reaction to what its going through, but I would definatly keep fighting the system to get the care you BOTH need.

    please pass my best on to your wife, and take care of you as well.

    sue. x

  • Thank you everyone. Great advice. Consultant was good this morning so I am praying we can get back on top of this.

  • Hi SueH1!

    As Gwyn says welcome to the club no one wants to be in! 3 years ago I was in your wife's position! Catapulted onto the helter skelter. Chemo (3 lots of carboplatin & taxol) followed by debulking and 3 more lots. 1st 3 days after chemo fine, then felt like hitting brick wall! Had to go to bed. Bought expensive in ear thermometer and kept close eye on temp. If temp reaches 38 ring hospital immediately. Watch out for constipation! Do not self treat, call in the district nurses and get movicol. Loss of apetite leads to weight loss concentrate on small high calorie foods, fresh pinepple and small cubes of cheese worked well. Also ginger beer, ginger tea, plain digestive biscuits all helped. After 1st week I was like someone on speed until the next time. Be caring & considerate but do not smother, we need to be as independent as possible so we do not give in! I was 69 and on a cycling holiday in France when mine struck! Take all the help you can get! Your community macmillan nurse should help to get a disabled blue badge and Attendance Allowance under 'special rules' a boon for those days when walking 50 yards is like climbing Everest and AA (not means tested) enables you to get help with household tasks and special treats! Eg taxis!

    Pass on good wishes to your wife and my motto! 'this s*****g thing is in for a fight" she is lucky to have support! My sister and my daughter were there for me! My daughter bought me this Ipad to help me keep up with the net!

    Best Wishes

    Margaret!

  • Ps: your wife may lose her hair, she should get an NHS wig voucher but watch out for 'look good feel better" days at your local cancer centre. Get her booked onto one, worth it for the freebies, worth about £200! Also the expert advice on make up. I found losing eyelashes was worst! Went in for 'Cleopatra style' eyeliner! She may also experience changes to taste buds and sense of smell! All those lovely 'smellies' made me feel sick! Still do come to that!

    Regards!

    M

  • Thanks for all the kind advice. The fall put Sue back badly and she is in a lot of pain. Tomorrow I am hoping to get the Cancer Centre back on the case so there is a joined up service. We are battling on together. Hopefully she will be well enough soon to post on the forum herself.

  • You sound a tower of strength for your wife and I am sure you must be shell shocked so try to snatch time to rest so you can be uplifting for Sue. My hubby really had to change his lifestyle to look after me but I woud'nt be at this stage now but for him and my nurse+team. Will be praying for you both.

    Wxx

  • Yes I am very tired and recognise I am going to have to manage my time to get some sleep. I've already realised I will have a very different life but she would do the same for me. Thanks for your post.

  • I'm so sorry to hear about your wife. Just when you're feeling about as shell-shocked as you've probably ever been - she falls and hurts her back. I do hope the pain for THAT can soon be sorted out. You BOTH must be so exhausted.. Never, ever, think you are burdening us with your problems. We all feel for you both so much - and very often, reading about other people's problems put our own woes in perspective, or make us realise how much easier we now find coping.( As I hope you will feel in a while) Meanwhile, try and keep your chin up. You both must be feeling very low at the moment but I'm sure things will perk up again for you. This back pain, after your wife frighteningly passing out, must seem like the last straw for you. Take care of YOURSELF, too.

    With love and positive good wishes,

    Solange

  • Hi SueH

    I feel very sorry for you both - reading what you are going through, it brings back

    many memories. I finished my chemo end of may and I experienced extreme pain

    from the second day after treatment. This lasted for almost two weeks.The pain

    in my legs and feet was undescribable - my oncologist tried very hard with different

    drugs and did eventually manage to get the pain under control.I too used to keep

    a diary and this helped when talking to my oncologist about my experience. Also

    Margaret mentioned about the constipation - it can get extremely bad and I was

    advised to take senna tablets everyday and later on through treatment was also

    given movicol satchets which were GREAT for the problem. I know everything

    will be looking black at the moment for you - what with the shock and everything

    but we have all been through this and come out the other end feeling much better.

    Take care of yourself

    Best wishes to you both

    Angie x

  • Hi Sueh,

    I always keep a medical diary too, and because I was diagnosed this time of year, I got an academic diary that starts in August...I am currently on my fifth diary now..sometimes there is nothing much written in it... but if I have a pain I jot it down then if the Oncologist asks how long I have had the pain, I then know and can also see if it comes and goes I write in all medication al appointments and what has been said at each appointment...this far down the line this is invaluable to me... and sometimes the hospital types in the wrong dates etc on the notes and scans ( they have with me, one time being a year out) wishing you a better outcome love x G x

  • Hi! SueH

    I'm so sorry to hear of your wife's problems but have great admiration for the way you are supporting her. I very much agree that you need someone with good access to 'the system' to help and would suggest you try to get hold of preferably the specialist nurse at the Cancer Centre or failing that a practice nurse at your G.P. practice. This should take some of the load off you and help coordinate some of the care your wife needs.

    If it helps in looking ahead I have had OC now for over 7 years with an early long remission (4 years) and five lines of chemo.so far and my quality of life remains pretty acceptable. So - there can be some light at the end of the tunnel - just hang in there and take care of yourself as well as Sue! All the best.

    B.

  • All your kind wishes seem to be assisiting as she has slowly made progress today. Can't tell you how much it matters to have feedback.

  • Sue is back home now and slowly improving. Main problem is her back at the moment as it was badly bruised making for poor mobility. The chemo side effects seem to have reduced now. Also anti-constipation medication will now be given at the commencement of the chemo to avoid those problems. We know now that the side effects such as the aches and pains will hit hard about 3 days after the chemo day. The build up of fluid seems to have slowed so we are hoping this is a sign the chemo may be starting to work. Thank you all for your kind support which is also such a help to me as a carer for her. I hope in time Sue will use this site for support. I know she reads it but she is a private person so her posts will be at her discretion.

  • Hi SueH,

    Thank you for the update and good to know Sue is back home...good to hear the fluid build up has slowed down...I am sending my love and best wishes and a smiley face to cheer you up x G x :-)

  • Thank you to everybody for your wise words and support. My husband Matt and I really appreciate it. My back is still very painful but it is very slowly improving thank God. Thank goodness for sites like Ovacome where one can link up with others and their carers in a similar situation. This can feel like a very lonely experience so it is good to hear other experiences and learn tips to cope with what is a very difficult situation. We are on a learning curve so thanks so much for your input.

    Love and kisses,

    Sue

    xx

  • Hi Sue & Matt,

    So good to know things are improving...yes you are right o.c is a very lonely journey to be on, everyone knows someone for example with breast cancer but don't know anyone with ovarian cancer...it does help to know someone else even if it is on cyber space..you will get support on this site and learn a lot at the same time..it is so good that you have written to us yourself...but we welcome both of you.. I am sending you my very best wishes and love x G x and a smiley face to cheer you up xx

  • Thanks to everyone for their kindness. Back is still a problem but so much better than a few days ago and I'm grateful for that. 2nd lot of chemo on Wednesday so have been eating like a horse these past few days in order to off set effects in a few days time.

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