Hi @SueM
I’m really glad your dad got through it ok today. Hopefully after the transfusions tomorrow he will be start to feel a little better.
Waiting for results is hard isn’t it! Good that your husband is going tomorrow. Hopefully he can ask all of those questions.
How are you doing?
Hi Nicola75,
He got his transfusion this morning. My husband was quite shocked at how he struggled to even get into his van to get him there. My dad was milking every other weekend for a local farmer up until just a few weeks ago, so the decline has been very rapid.
He did not get to speak to anyone but they have been on the phone to say that my dad will now get weekly transfusions which will hopefully help him a little. I think that will help a lot mentally if not too much physically.
He is still in complete denial about what is happening and we are not sure if that is to protect us or himself.
He thinks his consultant only deals with the blood side of things, he does not realise he is an actual doctor who is managing this condition, so he still insists on calling his GP when he is feeling poorly. He is going to call his GP tomorrow about his enlarged spleen as he is really struggling to eat. I am not sure what he thinks they can do for that? I have no idea what his consultant said or if he took anything on board that may have been said because they are not a proper doctor to him.
I am feeling all sorts of emotions right now. I am trying to navigate this with the way my dad is approaching it as I do not want to worry him by saying something that may upset him, but sometimes I just really wish he would talk to us about it and let us know what he does know. We have a few days until the results from his biopsy come back so perhaps these will be the last few days of what has become the new norm and then we may move to a different level after that. Perhaps it is best to just go with the flow until then.
I am also trying to keep my mum calm but at the same time preparing her for possibly the worst news.
I am trying to remain positive but it is hard when I have been monitoring his condition secretly from he very start and I know how high or low his various blood count results are compared to what they were 2 years ago. I can also see how much weight he has lost and how he struggles to do the slightest thing. The addition of the enlarged spleen diagnosis, just increases my worries about what the prognosis may be.
SueM X
Hi Sue, I have been thinking about you. Glad to hear the the biopsy has been done and that things are moving. It’s hard waiting for results, but now that he has seen the consultant should get thing moving. If your husband doesn’t find someone to speak to, perhaps a phone call to the consultant’s secretary or the specialist nurse could help. Keep in touch.
Very best wishes, Kate x
Dad woke up on Saturday morning with a fist size lump at the top of his leg. Much to his annoyance we rang 111. Dad was very sleepy but we managed to get through the triage questions with him and thank goodness they decided they would send someone out to see him. 6 hours later an out of hours doctor arrived and was very shocked to see the condition may dad was in. It turned out my dad had an infection and possible internal bleeding. We were told to take him straight to A&E with a letter from him to speed up the process. For the first time ever my dad had to accept the use of a wheelchair to get him into the hospital and he was wheeled about on the chair for hours whilst they did blood tests, an EKG, 2 x CT Scans, Chest X-Ray and Bladder Scan. The service was exceptional with the doctor actually coming and taking him for the various procedures herself.
He ended up having to have fluids, platelets, IV antibiotics and an emergency transfusion through the night.
My mum and I were asked not to leave.
He has had more antibiotics and and another 2 blood transfusions today because his level had dropped to 60 after the first one.
He has now been transferred to the Freeman Hospital In Newcastle to see if they can start some specialist chemotherapy treatment if my dad is up to it.
My dad is still insisting he still feels fine. Thank goodness a nurse actually told him how ill he is and he now does recognise that our intervention yesterday possibly saved him from a far worse situation.
This is all happening so fast.
Oh @SueM I really feel for you and your mum.
Gosh things have moved quickly and of course these things always happen at the weekend.
Give yourself time to take stock, your dad is in the best hands, now you need to look after yourselves too.
Thinking about you loads x
Thanks @Erica,
My mum and I are shattered. I was able to come home this afternoon but she has gone to Newcastle with my brother (a 3 hour round trip).
I have no idea what the next few weeks/months has in store for us all. I know we need to look after ourselves too, I am just not sure how will manage that with all the travelling and worry.
Sue M
This forum is there to support you every step of the way.@SueM
Don’t forget the Blood Cancer UK nurses are also there for you on 0808 2080 888.
Hospital visiting hours do no mean someone has got to be there all that time, it means they are the hours within which people can visit. I find hospital visiting exhausting for the patient and the visitor. Also don’t forget you have got the travelling time on top of that.
Perhaps try and just take it a day at the time and ask the medical staff any questions you might have. x
Hi Sue, what time you are all having. You must be relieved Please that your Dad is now in good hands. One of my relatives was treated at the Freeman hospital. I believe that it is a very good hospital. I hope that it is not too far for you to travel. Please let us know how he gets on. Thinking of you all and wishing you well. Kate x
Thanks @KateS,
I really hope there is something they can do for him. I am sure we will find out more today.
The hospital is 1.5 hours away from us so it is quite a round trip to visit.
I will certainly let you know what is happening. X
SueM
My dad was almost moved to intensive care last night but his vital signs improved so he was able to stay on the ward.
He has a raging infection and so many other issues. They are going to start him on a low does of chemo today to try and help some of those issues.
SueM X
Oh @SueM I cannot imagine how you and your mum are feeling at the moment and I hope that posting on here feels as if you have so much support from forum members.
Perhaps do not forget the Blood Cancer UK support line on 0808 2080 888 is also there for you.
Really look after yourselves
Hang on in there Sue, It’s amazing what the drugs can do. I have had several bad spells, but am still here. Your Dad is in the best hands
Sorry for abrupt ending- pressed the wrong button!. It’s so hard travelling, especially in this hot weather, so be kind to yourselves. I do sympathise - I lost my husband to prostate cancer 16 years ago. I only had 30 miles to travel to the hospital, but it took so much time and energy each day..Really feelng for you and for your dad - keep in touch and feel the love. Kate
Hi @KateS
We have just got back at 9.30pm after setting off at 11am this morning.
It has been an awful day. When my mum called the hospital this morning they said dad was fine. My dad even rang my mum after that so we were expecting to walk in and see him sat up and doing okay but when we arrived he was in a terrible state.
They have now mentioned sepsis and changed his antibiotics. Thankfully he rallied and was up and chatting to us by early evening.
The doctor wanted to see us us and explained everything that had been going on with my dad this afternoon. Unfortunately they are unlikely to have his biopsy results until early next week so we are still completely in the dark as to what may/may not be the plan going forward.
This is so hard and the travelling is just another issue to overcome. He is just so far away and it was so hard leaving him tonight but I knew I had to get my mum home to get some rest.
SueM X
Hi @SueM
I’ve been away so just catching up. It sounds like things have been so stressful for you all and more waiting.
I hope you have managed to get some sleep x
Oh Sue, I really feel for you. Does the hospital have any accommodation for family? It might make life a little easier for you if you could stay for a night or two. I hope that your dad’s antibiotics help. This disease makes us so prone to infections. Your Mam is lucky to have you. Take care of yourselves and keep in touch. Kate xx
I have suggested to my mum we book somewhere to stay but she wants to be in her own bed. I have suggested that may have to change as she is not the one doing all the driving. That is my husband and brother currently who are also exhausted.
My dad had a very bad night and mum was in regular contact with his nurse through the night. The staff have been amazing.
We spoke again to the nurse at 11am and he was more settled. My mum and brother have gone down and myself and my husband are getting some rest in case we get the call to go.
The waiting to see how he is so hard and so is the fact that they are still waiting for the biopsy results before they can make decisions. At the moment the sepsis is the priority though and hopefully getting on top of that.
SueM X
Hi Sue, Good that you and your husband are having a much needed break. You will need all your energy for next few days. It’s good that your brother is there to share the load. I hope that the news will be better tonight. I know that the waiting is hard, but try look after yourselves. Keep in touch - we all care Kate xxx
Hi All, I just wanted to let you know that my dad passed away yesterday morning.
We managed to get him back to our local hospice on Friday afternoon and he died at 7am the following morning. He was born 2 miles from the hospice and was awake enough when he arrived to know he had returned home.
It has all happened so fast and I have not had time to process it properly, but I really wanted to thank everyone for all their kind words, advice and the support I have received during my dads journey. X
Oh @SueM I just do not know what to say, you have shared the struggles you and your mum have been through on here so honestly. You have both done everything possible for your dad and I am glad you were able ‘to get him home’ at the end.
Yes, everything has happened so fast, perhaps now you can both take some time to start to process it all and get some rest. There is no right or wrong way to grieve and everyone grieves differently and thoughts and feelings can be logical or completely illogical.
You are both very special to our forum and please do keep sharing how you are on here. The Blood Cancer UK support line is also there for you on 0808 2080 888.
Sending you both so much love xxx