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My wife has been diagnosed with a rare blood cancer called MDS (bone marrow failure) she had chemotherapy in November 2018. 2 days after finishing chemo she had a temperature of 38 degrees and was admitted to hospital via A&E she was put on strong antibiotics and loads of tests. She was discharged after 10 days after 5 days her temperature began spiking again admitted to hospital again through A&E she has spent the whole of Christmas and new year in Hospital. Talk about a roller coaster of emotions up one day down the next, coming home to an empty house, my daughter visits every night even though she lives along way from the hospital. My wife is sleep deprived, poor Hospital food, poor appetite, her mental state is not good. I am having great difficulty in holding myself together I want to cry but can't let it go, i get very emotional on the phone sometimes can't finish a conversation. I can't show my emotions in front of the wife as know this would upset her to think i'm not coping with it all. Any advice would gratefully accepted.
Hello Anthony and welcome, though so sorry you found the need for the site.
please remember the phone number to speak to an understanding professional, displayed widely on site, 0808 808 0000 in case things really do get on top of you.
Do ask your wife’s team what their next step is, are they considering more chemo, maybe a stem cell transplant, or what? There are groups which can help you there if and when you know what the team is planning. At this (very scary) stage it’s really you yourself who should be proactive on your wife’s behalf, seeking answers from her team.
So very sorry that the hospital stay is such rubbish for her, again ask if it’s possible to get and take in foods that your wife enjoys to tempt her appetite, or if nutrition drinks could be prescribed, as it’s so miserable not getting enough decent nutrition.
Please do fill in a bit of info on your profile (it helps for others to know what you’re dealing with, doesn’t have to be much, mine is a bit like War and Peace because my journey has been a long one)
Last of all, sending you hugs as it’s so tough trying to help but not being able to find a magic potion xxx
Thanks for replying there are no magic potion for the cruel disease of cancer I know great advances have been made but for some there is no light at the end of the tunnel. My wife is 71 born in Birmingham UK in 1947 she was diagnosed by accident really, she has low thyroid function had an annual blood test which showed low platelet count she was referred to a consultant at a local hospital where strangely her blood count was going up, so they decided just to monitor her for now blood test every six weeks. then her blood counts started to drop so they did a bone marrow biopsy which was inconclusive. She also had another rare blood condition called PNH she was placed on another watch list as the PNH clone was only 1%. In September another blood test showed her blood levels had dropped again so they did another bone marrow test this time it showed she had MDS (myeloid dysplasia syndrome) with a 2 year life expectancy as there was no cure and 30% of patients progressed to Leukemia we where devastated to say the least. In November she had a blood transfusion to boost her blood ready for chemo 2 injections of Acercitidine in the stomach over 7 days her stomach had large red wheals at the injection sites as a reaction to the chemo. Within 2 days her temperature had spiked to 38 degrees she had go to the local A&E, blood cultures were taken, Antibiotics were given, she was admitted to a ward ct scans were done which showed no chest infection but there was a problem in her bowel. 4 years previous she had a problem with her bowel called diverticulitis which had resurfaced causing a perforation in the bowel. The surgeons said it would heal on it's own surgery was not required it would heal on it's own. After 10 days she was discharged from Hospital within 5 days at home her temperature started to spike over 38 again back to the local A&E same procedures again admitted the ward again more CT scans, blood tests, heart scans, her arms are black and blue from repeated blood tests the veins so difficult to find.
up 1 minute down in the depths the next I suppose that is the cancer journey. My wife is a fighter a very positive person but I can hear in her voice positivity is draining away, her mother was diagnosed with breast cancer at the same age. I am in my 73rd year suffered with anxiety 9 years ago so you see why I don't want decend in the that again, sorry it so long winded but you need no know the whole picture
You can not be strong for ever but I do understand just keep posting get it off your chest on here if it feels easier or by phone your wife is in hospital and such a worry but please do not forget yourself you also need help and hapoy you have made the first steps on here you ate not alone xxx
Hi Anthony Anthony C, I just came across your post and wanted to say hello.
I have lived with my rare type of blood cancer for 20 years now and for the first 14 years things were ok but the past 5-6 years were hard going and I can identify the challenges your wife is having as I have spent many a day in hospital going through treatment or with various infections including over the Christmas and New Year session.
You have to trust in her team and at the same time look after yourself, I would always say that the carer has as rough a times as the patient.
It would be good to talk with people who are in the same boat. You can do this on our Carers Only Forum - following the link, join the group and hit the 'Start a Discussion' tab and post away. These folks do understand and can walk this through with you.
If you have a Maggie's Centre near you - go in, as these folks are amazing and up in the Highlands where we stay people will willingly do a 4 hr round trip to get the support available.
Check out for any Macmillan Support that is in your area and as moomy has mentioned you can call out Macmillan Support Line Services on 0808 808 00 00
As moomy has said, it would be really useful if you could put something into your profile as this does help others when replying to you or for those looking for support and information as they can read a bit about your journey so far.
Just click on your username and then select 'Edit Profile' under the 'Profile Settings'. If you're not sure what sort of thing to put just click on my username, Thehighlander to read my profile but my journey was rather long.
All the best
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Click to see how to add details to your profile
Hi again Anthony,
now that we know a little more (thank you for replying but please do add to your profile if you haven’t yet) I’ve an idea, one of our local Lymphoma patients also has MDS But was started on steroids and it has helped her enormously, they began on a fairly rapidly increasing dose till she stabilised then gradually they have decreased her doses to a reasonable level, she is well and has no need any longer for the blood transfusions she was needing every few weeks.
It might just be worth asking your wife’s team, again, what they plan for her, and if they do not have a plan in place, to seek a second opinion from a haematology specialist.
I too would seriously advise joining the Carers Only group (Mike has posted a link in the above post for you) as it will help you in talking to others in a similar position.
Thanks moomy I have now edited my profile one thing I forgot to tell you to add misery on misery I have got a cold now so I can't even visit the wife now not even with a face mask hopefully it will pass quickly. ps I have joined the carers group thanks for the advice
Awww, Anthony, hope it goes very soon (snap, I too have one, think there are a lot about) but I am sure your wife will understand. I guess you and she will be texting or messaging between you? I hope so!
Hi Moomy my cold is getting better hopefully I can visit tonight. She rang me this morning to say her drip leaked last so she woke with her bed soaked they had to get a doctor at 4am to put another cannula in so no sleep last night. They have put her back on antibiotics I suppose her infection markers are up again. The food is awful she described yesterdays dinner which was supposed to be meat and potato pie as like a pile of diarrhea even the doctor looked at it and said "yuk". I dread the wife ringing me now in case it is further bad news, is she ever going to come home ? thanks for listening
HI Mike thanks for your words of support, you have been through tremendous journey of treatments but still come across as being a very positive person. I have put some more info in my profile and joined the carers forum. My wife seems to have an invisible infection she's had 4 CT scans. 4 years ago she had a bowel problem called diverticulitis and a perforated bowel which healed without need for surgery.
A CT scan showed a problem with her bowel but no infection how with all the modern technology can not find out what is going on.
Hi Anthony just came along your post, how are things going ? M husband was also diagnosed high risk MDS October 2018.
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