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sandie58 11 years, 8 months ago.
Hello everyone. Have had a very stressful few days. Mum was doing fine up to last Wednesday when her doctor asked to see her for a chat. He wanted to make sure we had all the information to do with Myeloma, and I told him we knew exactly what was going on. Then he read the end of the Consultant's letter that said the MRI had picked up some lesions in the breast that they thought were just cysts, but suggested she be seen by the breast clinic to make sure. So, that is another appointment we are waiting for. The next day mum rang me to say she didn't feel well and I rang my brother to pop in until I could get in to her. She looked awful, felt cold and shakey and her temp. was 38.8. So straight to A & E where they checked her thoroughly and gave her some IV antibiotics. They took a chest x-ray and urine sample as they didn't really know where the infection was. Mum didn't have any cough or cold symptoms or urine problems. They did find some shadowing on the right side of her chest. Don't know if this is infection or the cysts that they saw previously on the MRI scan. They took some blood cultures for testing, gave her two packs of oral antibiotics, and after 8 hours we came home. The next morning mum looked her usual self and her temperature was normal so we thought good, took the first antibiotic, and then got a phone call to say they had found something serious in her blood culture and we had to go back. She stayed in EAU for two days, plugged into liquids and IV ant. and then moved to a ward side room as they were barrier nursing her. She did have diahrroea as well so they were being careful. Don't know whether that was due to the antibiotics or infection (seems to be getting better now). They just told us she had sepsis in the blood but she wasn't Neutropenic luckily, that would have been much more serious! She came out on the fourth day but was told if she came out she would have to come back for IV ant. for two weeks! That wasn't correct as when we read her notes it said one week IV and one week oral. They had found that Amoxcillan seemed to be the one sensitive to the Strep. bacteria they found, so hoping this does clear it up. We had to go the hospital 8:00 this morning and again this afternoon but luckily they have arranged for the district nurse to come 8:00 this evening and then she will come in three times a day to do the IV. Sunday we go to the hospital for two hours as I think they are going to re-do the bloods etc., just to make sure the ant. are working before they put her on the last week of oral. (not a good time as it's Mother's Day).What a fiasco it's been!! Very stressful for mum as they kept moving her about although most of the nurses very really nice, and her BP was very high, and still is. I'm keeping an eye on it as home. For the rest of the week she should be able to rest and hopefully it will come down. The worrying thing is that she had only had two courses of Cyclo. and Clasteon, and was in fact due to take the third on the Thursday she went to hospital. She still has to see the Consultant next Thursday and we will discuss where we go from here. I'm thinking that he may put mum on long term antibiotics to prevent her getting infections again. We couldn't keep having this happen every couple of weeks, as it would extend her treatment from to 6-9 months to…………….!
Anyway, mum is feeling fine at the moment, and I'm just hoping that she at least gets a good period on chemo without this happening again. We still don't know if the Sepsis was caused by her picking up someone's germs at the doctor as her immunity is lowered, or whether it's just something that could happen anyway (the latter would be more concerning). We have been told that when mum goes to the hospital for blood tests in future, that she should tell them she is having chemo so she is seen straight away and not sitting with a crowd of people. Trouble is this could apply to going anywhere, shopping etc., although doctor's surgeries and hospitals are probably the worst places for her to be. She can't become a recluse for 6-9 months as she will become depressed. Would like to here from anyone that has experienced this and can let me know what their Consultant did to prevent it happening (I'm hoping something can be done)
Sandie x
Hi Sandie
Sorry your Mum is going through a rough time, I cant help on this one am afraid just wanted to send My Good Vibes.
Love Tom Onwards and upwards xx
Thanks for your good wishes Tom. Hopefully when end next week comes things will be a bit more settled again and mum can continue treatment.
Love Sandiex
Dear Sandie,
Sorry to hear about the time your Mum and you have been having, but glad to hear she is on the mend. Impressed you have managed to get the district nurse involved, it is terribly difficult to get them doing anything where we live! Just to say that my Mum has been on long term antibiotics since she was first diagnosed and I like to think this has given her some protection against infections, at least she doesn't seem to have suffered and seems to get over colds etc quite well. So this might be worth suggesting with your Mum's consultant.
I certainly don't think your Mum should be a recluse, I have encouraged Mum to keep going to her weekly club and other things, at their age you can't put everything on hold. I just remind her to wash her hands regularly and she carries a little bottle of antibacterial gel to use as well. Having said that she has picked up bugs but they don't seem to have turned into anything serious thankfully.
Interested to hear what you say about going for blood tests, I have never thought of trying to avoid waiting in the busy area with Mum but maybe I should try it next time, I tend to take her when I know it will be quieter if I can.
Take care,
Jill x
Hello Jill. Have had a bit of a time of it. The District Nurses were lovely and came out three times a day to do the intravenous antibiotics. Mum was given 3g a day so double the usual strength of oral. She had this for a week and on Monday we went back to the hospital for another blood test. Spent four hours waiting around and then saw a junior doctor who told us that all signs of infection had gone, but she was then given another week of oral just to make sure. Anyway, tomorrow we are back to see the Consultant to discuss starting chemo again. If he doesn't suggest it I will ask him if mum can go on long term low dose antibiotics to prevent this happening again. We cancelled the breast clinic appointment as mum just didn't feel she could cope with it this week, but we have an appointment next week and I am just hoping that they don't find anything. She doesn't need the worry of breast cancer on top of the MM. Mum looks and feels well, in fact she did after the one day that she was ill. Has had a bad pain in her shoulder blade but don't think this is associated at all with the MM as it's on the opposite side to her suspicious breast lesions and the lesion she has in her right shoulder. Hoping that she will be able to continue with her chemo and not have any problems for at least a good period of time. Perhaps we'll be able to get back to our shopping trips on the days when she's feeling better. She's not very mobile but lack of exercise is probably not helping her stiff joints! I hope your mum is doing well.
Love Sandie x
Hi Sandie,
Very glad to hear your Mum is feeling better, I think the regular antibiotics sounds like a good idea – it certainly seems to work for my Mum. My Mum had to have a blood transfusion on Monday, she was rather anaemic again which may be myeloma or down to the treatment, anyway she certainly looked better afterwards although the day at the hospital was tiring for her. She has now started the second cycle of her current chemo regime – all her blood results last week were fine and not too much impact on the immune system yet which is good. We will see her consultant next week and will find out whether the treatment is helping reduced the MM levels – if it is then it is worth carrying on for another couple of rounds.
Let us know how you get on with the consultant tomorrow, it is good to hear how someone a similar age to my Mum is getting on!
Love, Jillx
Hi Jill, hope your mum is doing well now. How is she with her current treatment and has she seen her Consultant for results yet. I hope her MM levels have come down. I posted in the treatment forum as well so you have probably picked up my news on mum's breast lump. We are meant to be going for results on Monday, although everyone says this is very soon as it wouldn't have even been a week. It's snowing here so I think I will ring them before we set off as I don't want a wasted journey if the results are not back. They have already warned us we will probably have a long wait for that clinic. Am hoping it will be a benign lump or something to do with the Myeloma rather than another cancer!
Speak soon. Love Sandiex
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