Breast Cancer Now Forum

Hi everyone sorry not been on forum . Not last week but the week before I have been quite sick. Macmillan Nurse came to see me last Monday and told her how unwell I have been and to look at my anti sickness meds. Felt fine and saw Oncologist on Thursday who agreed to me going on the Cape for a week and two weeks rest. I had found 3-4 small lumps in the side of my neck and she thought I may be brewing an infection . My son has a cold which I think I have caught from him. Today is first day not been sick but I just have a lack of energy. My hubby has said at times when I am talking to him it does not always make sense. He said I look spaced out sometimes. Just been going to bed during the day and stayin there until the following morning. I just want to keep fighting this and feel bad as it is School holidays and cannot go out. We have had to cancel a few things as we don't know how I am going to be . See the Oncologist on Thursday just hoping I can continue the treatment. My hubby went back to work today but is stressed as he knows I will say I am fine when I am not . So another pj day today and just eating light snacks. I will try and post at the end of the week when I have seen the Oncologist. Hope everyone is ok especially people who are having a rough time. Love and hugs to everyone xxxx ... View more

Hi everyone thank you for your kind words and support. Not posted on here as I seem to have a rough day when I am being sick and having to go to bed. Then have a couple of ok days. It was my son's Birthday yesterday and was going t go out for tea but my son decided to have a take away in case I was unwell . I was unwell and could not eat the food. I felt guilty about it. I am trying not to give in as I want to go to bed when I am unwell. I think it is the cape making me feel sick and need to keep on top of anti sickness meds. I see the Oncologist on Thursday I just hope he does not take me off the Cape because I feel it is doing something even if it just slows things down. They had said it would not change things with my liver but I feel hopeful with the things people have said on this thread. Definitely having a positive mind and setting myself targets such as my Daughter's Prom in June. II will try and post when I can to let you all know how I am going on . Hope everyone is ok and thank you to listening to me. This keeps me going. Big hugs xxxxx ... View more

Hi everyone hope you are all having a good weekend. Just thought I would update you all . I saw Oncologistbon Thursday and my platelets were 48 . However HB dropped below 8 so had a blood transfusion on Friday which will lower platelets. My Hubby was impressed with me as I was quite assertive regarding the cape . So had a week off and restarted cape yesterday . The good news is that the Oncologist does not need to see me for two weeks. I have had lots of visits from professionals and one of them said I looked better than she thought I would be. Told them all that I am fighting this and not going to give in. I am having the odd rough day but trying to go out . I am struggling with my appetite and having to say I need smaller meals as I feel it is too much. Just resting when I feel tired . I feel positive at the moment as I have read some threads which has given me hope. Trying to drink plenty of water and my Hubby sorts my meds out so we are making a good team . Sorry I am rambling on lol . Take care everyone and big hugs xxx ... View more

Hi everyone , I got home at about 7.30 tonight . Glad to be at home. Kids are sort of happy that I am at home. They have all gone separate ways never mind lol. Discharge from Hospital were delayed due to problems with pharmacy. Just really tired as had to have break thru pain relief as prescription chart was at pharmacy. Nurses were not happy as I was in quite a lot of pain . The Doc said I had to stop cape tabs and also antibiotics as no signs of infection. Also the spikes in temp due to the disease and platelets were 48 on Monday but dropped to 38. I felt that the Doc was talking to me she had written me off. I told The Doc that I am only 48 and still have fight in me . That I wanted the treatment and know it won't cure me. It buy me some time. Anyway I am restarting cape again today and feel I am doing something positive . Trying not to stress mmm think that will be a while with the kids. Anyway hope everyone is ok and send love / hugs to you cape crusaders . Xxx ... View more

Thanks everyone I appreciate your support. Still in Hospital . I was not very well yesterday and could not eat anything. Been prescribed extra anti sickness which is helping. Feel better today and went for a short walk along the ward . Had to sit down for a rest which is a small positive step towards going home. Don't know when I will be going home yet. It can't be tomorrow as I am having my hair wash/cut and blow dry tomorrow afternoon at the hair salon in the Cancer unit lol and might even have my nails done too ! Think I will feel more myself. I have a bed by a window so have a good view of the car park and road. Been watching the antics of bad parking lol. But it is a miserable day here. Still not told the kids due to my Daughter's mock exams but nursing team here said they should accommodate Catherine with what is going on. So we are getting in touch with the headteacher to see what support/options my. Daughter has . The nursing team here have been fantastic here and are flexible with visiting. My hubby had been able to drop kids off at School and comes to see me until 2ish so at least we can talk about things. There is just one Senior Nure who rang the bell at the end of visiting just a couple of times while I have been here. Hope everyone is having a good weekend and positive vibes to anyone who is not feeling well. Hugs to you all and I will keep you posted Xxxxxxxxxc ... View more

Thanks everyone. It has been a difficult day today . I finally saw my Oncologist. I had a ct scan on chest and abdomen . Not good news I am afraid. Onc told me that breast cancer has progressed and become more aggresssive. It is in my liver and have inflammation in my lungs. He said He doesn't think I have much time left. Onc said he is worried if I have an internal bleed or my heart could give out as I get weaker. We are absolutely devastated and been hard telling my Parents . We have decided to not tell the kids yet as my Daughter has mock exams for two weeks. Oncologist said I could continue on the cape tablets but quarter strength as Chemo will destroy platelets. I said I am not giving up and will fight this . Just want some more time especially as my Daughter has got her Prom in June. Just feel cheated and angry as I am sure that alternative meds sooner but I don't want to waste my time on what could have been . I think what upset me most that the Onc wants to put a DNR in place. I am sorry about this news but you all have been so supportive and kept me going . Xxxxx ... View more

Thanks Moijan xxxxxx ... View more

Hello everyone, Thanks Moijan . I am still in Hospital and won't be going home just yet. Trying to sort my pain relief and bloods. Feel fed up as I am now worrying and just want to go home. Nurse said they cannot send me home due to platelets which as you know have been for a while. I think I got my hopes up as Discharge co-ordinater came to see me what I need at home as equipment . Feel very tired at mo so do excuse me if any of my words do not make sense lol. I have had a sicky day today and not eaten much. Think due to new painkillers and having potassium. Visiting time pressures have eased as we can sit in a quiet room . The kids are desperate for me to come home. I know if I go home then , I will be back in. Just been told that there are a few people waiting in a and e for a bed. So best staying here. Sorry I am. Not positive at mo just need to concentrate on getting gome. Hugs to everyone . Xxxx ... View more

Hi everyone , still in Hospital. Feeling better than I did. Changed antibiotic on Friday . Still on some oxygen and had to have platelet transfusion yesterday. I have had one Doc say pneumonia and another chest infection. They are trying to get on top of bloods. I don't think they know what to do and just treating symptoms as they happen. Just tired. Palliative nurse has seen me and changing pain relief . Hopefully I will be home soon . Family are missing me and I am missing home too. Keep you posted . Hope everyone is ok and tests/appts go well. Xxxc ... View more

Aah thanks everyone. I had to have two more units of blood last night. I have had ultra sound on legs and ct scan to check for blood clots. Good news no evidence of clots. But I have Pneumonia in lower left lung and fluid. May have to have fluid drained if it had increased. Monitoring bloods and may need further transfusion . Good half term but at least I know what we are dealing with and have been on antibiotics since Monday night. Still feel slightly out of breath when mobilising short distances but hopefully on right track to get stronger. We have said no point going home until it is fixed. Just feel let down that my Onc has not seen me and moved review to next Thursday. Perhaps there was nothing else they can do at mo and being treated for main problem at mo. I had a rough night and needed Oramorph a couple of times. I was restless with neck and rib. The rib discomfort obviously due to the pneumonia . Anyway hope everyone is ok and not been blown around too much by Storm Doris. Sending hugs to everyone xxxxx ... View more

Aah thanks Barton . Just hoping they can fix these problems and I can get on some regular treatment. Think there will be a few questions on Thursday my Hubby wants to complain .I just don't want to waste my energy and get stressed. We did manage to stay in posh hotel . My youngest was too excited so was a bit of handful but it was nice. I like my cooked breakfast but could not face it especially with having such a dry mouth. Just NHS are under slit of pressure and never stop working. They are looking after me. My Hubby is getting annoyed as my Consultant not been to me but I said Doctors on the Ward here are treating my symptoms and won't answer questions about treatment plan. I am sure there will be a plan . I am giving them a headache at least in right place . Don't want you worrying as you are going thru iit as well. On the plus side I have my own room that is ensuite ok not posh but it is private .I am not googling about my symptoms just staying focused . I will keep you updated . Xxxxxx ... View more

Hi Barton It has been quiet on thread whether people are away. I know what you mean about drinks I ran out of ideas. Seem to go thru phases on different drinks. It is mainly soft fuzzy drinks, ginger ale, had pineapple juice but was worried about the acid with my teeth, statrted to drink ice cold milk which has helped . Just get fed up with water. I think it is mainly the taste in your mouth and does not always quench your thirst . Sorry about your med it is so frustrating . At least we can support each other. Come on stamp those feet not too hard lol x I have been quiet as I have not been well. I had a stiff neck for over 10 days and still need some help getting out of bed. I felt that stoned on Thursday as I was advised to double my Oramorph and also taking paracetamol and mst tablets which has helped some. Review last week not to start Cape but gave me a a small dose of vincristine to nudge platelet rate . We had booked a night away in a posh hotel for the night on Sunday and then we were going to have a couple of nights in Somerset. Just wanted some sea air and let the kids go on the beach. My hubby thought I was short of breath on Sat/Sun but thought I would be ok. Got up yesterday and I was so out of breath just walking across the bedroom. Luckily we were only 45 mins away from our local Hospital but Ocology unit had no beds and had to go to a and e. Got a bed 13.5 hours later on Oncology . That is another story but the ado for and Consultant on a and e were brilliant I had chest x ray and ct scan to rule out a blood clot. Checked my neck and back which Onc did not do on Thursday .Think I need tests on my heart due to fast heart rate. They said HB had dropped so two units of blood transfused overnight and may need a further two. Just think Oncology are struggling with me and wonder if I need to go to another Oncology unit. Feel rally fed up as had to cancel Somerset but I might have been more unwell . So staying in Hospital another night whilst they decide how to treat me. Trying not to worry but hubby is stressing me out as he is so worried . I am just awkward lol always have been. Just have to face each hurdle. Sending hugs and positive vibes to you Barton and hope everyone is ok xxxx ... View more

Thank s Barton . Will try and get extra pillows. Using hot water bottles as well which eases it a bit. Keep Hoping I will be able to put some positive news on. Just keep on falling asleep when I have had painkillers . Hugs to you xxxx ... View more

Thanks Barton yes it was frightening with the blood. I have been for oncology review today . Platelets are 20 and is concerned about them . He said it was not y platelets but the transfusion . So I had vincristine to nudge my platelets. He sad bloods were not very good and it is difficult t manage . Had a really bad week with pain in my neck and left leg /hip.. I slept on settee for 3 nights. Tried my bed last night which I slept but Could not get out of bed this morning so Hubby helped.I had to double my oramorph so felt very hungover. Onc didn't examine me. He said could be the bone marrow as capectabine as I had full dosage which has depleted platelets. So no Chemo this week and look at a reduced rate next week possibly . My ankles are very swollen too but due to anaemia . I thought I might have had a scan or x ray on my neck but Oncologist did not seem too worried. We are so frustrated at the moment as not able to do anything..Hubby is worn out due to lack of sleep . We feel perhaps certain information is being kept back ? Hopefully going to try to go away for a couple of nights locally so kids can have a swim and I can rest.. Alsobchange of scenery . so fingers crossed everyone xxx Hugs to everyone and hope everyone is ok xxx ... View more

Hi Moijan thank you . My oh has ordered me a special pillow for between my legs to see if it helps. Anything is worth a try . Waiting for Occupational Therapist to do home visit so hoping they have some ideas. Think painkillers are kicking in now. Just can't do anything which impacts on the family especially the kids as they get bored. So use to me running around. Oh well another week and kids are off the following week so trying to arrange a few things . Hugs to you all xx ... View more

Hi everyone hope you all having a good weekend. I had a trip to the Hospital yesterday as I had brought a small amount of blood up. Had blood tests and my platelets ate 19 but decided to give me another unit of platelets. Also think I am brewing an infection so on antibiotics for a week. Cannot fault the care and they are being cautious. Review on Thursday. Just want nice weather as in pain with my hips and have slept in a funny position and my neck is aching. So full of painkillers and hot water bottles, I don't feel like doing much at the moment. Hopefully will feel better tomorrow. Big hugs to everyone xxx ... View more

Aah thanks Barton I will do. Hope you go on ok. I will stamp my feet for you x Thinking of you too Liz xx Had transfusion so need to behave self . Mind you the Nurse said that my temp was going high grrrr! It always happens when my oh is on nights. He has had to tell them he can't go in just in case I am unwell. Just want put my pjs on but groceries are being delivered so dont want to scare the driver ! Hugs to everyone xxxx ... View more

Hi everyone, been for review at Hospital today . My HB is ok from blood transfusion but my platelets have dropped to 12. I knew the platelets were not going to be good but trying not to worry. So I have got to have a platelet transfusion later. Cannot start Cape this week so that will be two weeks not on med. I feel a bit down about it as feel my options are becoming less. Just hoping that either the Cape works or there is some medicine out there that can stabilise me. Feel like stamping my feet . That might help me feel better. Has anyone else been the same ? Big hugs everyone xxx ... View more