Hi all
I do appreciate the posts from you guys. Jill as you and your OH are a few months ahead of me and mine. It helps me find context when it all feels out of control.
I have tried looking at the stem cell posts Erica and it was a bit too scary for me. So i have headed to this thread which is my safe space.
Thanks for your support guys x
2 Likes
Morning @Debbie36. It can all seem very overwhelming at times which is
completely understandable. Iām glad that you are finding sharing on here useful. The other threads are there when you need them 
2 Likes
I completely understand how you feel Debbie, at the start of our journey I came on this site and initially it didnāt help at all. Everything I read scared me so much and made me so anxious and overwhelmed so I came off the site for a number of weeks. Eventually my head came to a better place and I came back on.
I think whatever they decide, Stem cell transplant or chemo only I think you will be in the best of hands. We have been amazed by the help and support we get from the NHS. We are very lucky in the UK.
3 Likes
I cant agree more. We have recieved excellent NHS care.
1 Like
Hi Summer, its good to see your latest post 7 months on and that you and your husband are discovering your new normal. It gives me hope as I am still in panic mode with my husband. He has just completed his induction cycle (6 weeks), which he had responded well too and was home from hospital and being treated as an outpatient. But, he has had infection after infection and other side effects which have meant he has ended up back in hospital. It feels like we have a revolving door to the hospital just now. Every time he gets an infection, i find it hard not to panic that everything is going wrongā¦You are right to start to do some normal things when your husband feels like it. Our consultant told us to go to restaurants (on quieter days) , see friends etc as its needed for mental health and will help get through the treatment. The cinema is on my list too once we are a bit more stable. Thanks again for your post
4 Likes
Good luck, @Catpat. Hope it goes well for you both. I think most people get infections during this phase, so although itās definitely not great, itās an almost inevitable downside of the process, rather than things going wrong. Hope there are not too many more for him. Heās getting there! X
1 Like
Hi @Catpat hope you are ok, pleased my posts are a help. As you say the first few weeks are a rollercoaster ride, during the induction and intensification it was the most worrying time, OH spent quite a lot of time in and out of hospital and he keeps getting cross with my obsession in taking his temperature. I know its hard not to panic and feel anxious but the hospital did seem to say its to be expected. Since Consolidation started 3 months ago he has only had one chest infection when he had a cold but he recovered OK and didnāt go into hospital. The problem with this stage is the treatment causes his blood counts to drop, its due to a drug 6-Mercaptopurine so it is constantly being adjusted.
I know other Consultants views of socialising and going out are different and advise patients to isolate but our Consultant always says āwhy notā just be careful of risks and take as many precautions as possible. As recommended have have invested in some FFP3 masks ( non respirator). We are even hoping to have a weeks holiday (in the UK) when he gets onto Maintenance 
.
@Catpat let me know how you and OH get on.
1 Like
Thanks for the reply and supportive words. Husband is back in hospital with what they think is pseudogout. He has had this three times now. He was prone to gout before he had leukaemia. He was given steroids both times which worked great but now they dont want to treat it this way as the steroids can cause other problems. I think you mentioned your husband had gout? Do you know how they treated it?
Iām laughing at you being obsessed with his temperature but I know what you mean!! Thats good he has only had one infection and also good that they know the reason his blood counts drop and can adjust the meds. The gout seems to have bamboozled our team for now.
We have the FFP2 masks but might be an idea to invest in the FFP3 ones. Thats great that you are thinking of a holiday. We have a wee caravan about an hour from home that we were hoping to go to when James has his four weeks treatment breakā¦Hoping we can get rid of all these storms soon and get some better weather. Take care summer123
1 Like
Thanks for your support fullofbeansā¦you are right that i need to see it as a downside rather than āeverything is going wrongāā¦The consultant did say to me that all of these infections etc are just an inconvenience!! He is now back in hospital with what they think is gout and high crp levels so want to keep an eye on him for a few days before he gets home again. As you say he will get there. Thank you ā¦xx
3 Likes
Oooh @Catpat the gout my husband had was terrible. Mainly in ankles and toes he couldnāt walk, they started him on steriods then high doses of Allopurinol he now takes a low dose of Allopurinol every day as a preventative. Just told my husband and he said give you husband his sympathy he know how painful it is. Hope he is sorted soon.
Great you have your own caravan, we are thinking of taking our Granddaughter for a week in a caravan near Cromer. A place where we took our own children when small.
Jill
3 Likes
aw Jill tell your husband thanks and I will pass that on to James tomorrow, sometimes it helps to know somebody else has been there too. He is really quite miserable with it as this is the third time!! ā¦A week away with your Granddaughter sounds like just the treat to look forward too. We bought ours just three years ago and love it but were a bit restricted with lockdowns etc!! Its in a wee town in Scotland called Dunoon. It has lovely views. ā¦take care.
3 Likes
Oh fingers crossed they get on top of these things and heās out quickly, @Catpat. The toing and froing to hospital is also hard to deal with, for you both. And Iām presuming thereās still little to no hospital visiting. Thinking of you both. X
3 Likes
All this talk of holidays, caravans and the seaside is making me crave a bit of normality.
My OH has just headed off to his first trip to the hospital clinic appointment on his own since he took poorly. Unfortunately ive tested positive for Aunty Rona and trying to keep him as far away from me as i can. Its hard when he keeps checking up on me. So far he is testing negative but we have a PCR ready at home. I spoke to the surgery yesterday after they called me when they were notified and let them know that if he tests positive OH will need the antivirals. They were very reassuring and said i would just need to call and it would all be sorted for him if needed.
Thats was a bit of a relief i can tell you.
On a more positive note and back to the holiday theme ive told OH that when he goes into Oxford for his stem cell transplant i am going to take myself away for a few days. Our favourite place is Malta and its like a second home so thats where i will be heading.
3 Likes
Sorry to hear youāve tested positive @Debbie36 - hope youāre doing okay and that you recover quickly. Really good to hear your OH spoke to his clinical team about the plan for if he does test positive. Bet that was v reassuring! Weāve got some info on the treatments here in case itās helpful - Antibody and antiviral treatments for people with blood cancer | Blood Cancer UK.
Wanted to let you know of this webpage just in case it can be helpful at all - What if someone in my household gets covid | Blood Cancer UK.
1 Like
Thanks for that info Alice
1 Like
Hope you get better quickly, @Debbie36, and manage not to pass it on to your husband. Thatās a stressful challenge! Your surgery sounds prepared, though. Best of luck.
1 Like
I love Malta! Must be very reassuring to k ow the antivirals are there if needed. Everything crossed you donāt
1 Like
Oh @Debbie36 sorry that you have tested positive for Covid, please look after yourself.
I am glad that you are set up if your other half catches up, I do like to have a plan.
A few days away in Malta is something to look forward to when your other half goes in for their Stem cell transplant.
Take lots of special care of yourself
2 Likes
And now we have a full set of positive results.
2 Likes
Iāve got everything crossed you all recover quickly. Please do give us a call on 0808 2080 888 if you or your husband need any support.
2 Likes