I have also made contact with the Hammer Out patient and family support worker who runs the Brain Tumour Support Group in Worcestershire. We are hoping to attend their next meeting on Friday morning which meets at St Richard's Hospice in Worcester.
Heard from the GP and the Specialist Haematology Nurse today that the Consultant Haematologist at Worcester has made a referral to Cheltenham General re radiotherapy treatment. Hopefully I will be able to speak with the Consultant tomorrow by phone for a more detailed update as I believe she had tried to contact me today whilst I was out and about.
I have also made contact with the Hammer Out patient and family support worker who runs the Brain Tumour Support Group in Worcestershire. We are hoping to attend their next meeting on Friday morning which meets at St Richard's Hospice in Worcester.
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When we met the Consultant Haematologist on Monday, she said she would make a referral to a Cheltenham Oncologist for Radiotherapy treatment. When we still had heard nothing about an appointment today contact was made with the GP surgery to find out if they had more news. Apparently not! A phone call to the consultant's PA established that the referral letter had not even been dictated let alone sent. Colin's GP and the specialist nurse at WRH are now both on the case and hope to find out more about what's going on (or not) on Monday.
On the positive side, the local Physio has made contact again and is arranging for specialist exercises in the local hospital to help with the balance problems and to help rebuild the body/muscle. The Occupational Therapist has also made contact again and suggested Colin sings(!) along to his favourite music to help with the residual speech problems - although these have significantly improved. Colin is also practicing his handwriting which is slowly improving thanks to some guidance from a Ladybird book from many years ago! Continuing thanks to all of you who have made contact recently - all emails/comments are read and noted even if they have not all made it to the blog or been replied to. We hope there will be some more positive news to report soon. Colin (& Jane). .....are the words the Consultant used this afternoon! No more Chemotherapy on the cards because of the adverse reaction to it. Referral is being made for Radiotherapy at Cheltenham. This, of course, is not without its risks and side-effects. There will be follow-up appointments at Worcester but no scans unless symptoms suggest these are needed. Recovery in terms of balance and coordination, etc., is continuing well from the Chemotherapy however. Now await an appointment with the Consultant Oncologist at Cheltenham.
So.....there is much room now for the miracle that a number of you have mentioned over the weeks in your comments and emails. Many thanks for your continuing support and good wishes. We'll update this blog when there is more information available which we hope will be fairly soon. Colin & Jane. . A bit of a delay since I have been home - that means I have kept Jane busy too! (Nothing new then, eh?).
And to be honest I have been dictating my posts to Jane as my co-ordination has not been fantastic. The District Nurse and the Physio visited Friday to assess and offer advice. Saturday saw a guy explaining how an emergency telephone call system would work, and installed a system to try out - it would at least let Jane go out without worries if I fell. Much on the mind is what the consultant will say tomorrow. Yes, this is Colin and I'm still enjoying being at home. My sleeping is improving and my balance and coordination are getting better.
Since Tuesday afternoon (is it that long ago?) the intermediate care team have visited and assessed my abilities to maneouvre etc at home and the community Occupational Therapist visited yesterday to provide practical advice on showering etc given my balance difficulties. She also had some useful tips to help me improve my handwriting. The District Nurse should be visiting tomorrow to attend to the Hickman Line and take some blood! Monday is the next 'big' date when I have an appointment with the Consultant Haematologist at Worcester Royal Hospital. Many thanks to all those who have sent me cards, messages and good wishes. They were all very much appreciated by both of us. I have updated this blog with some of the many comments which have been sent - sorry if yours hasn't been included but all have been read and welcomed. This is Colin and not Jane for a change!! I either escaped or was let out this pm - I'll let you guess which.
It is good to be home, albeit for a while, and look forward to some home comforts before the next round of chemo - or whatever! Also had a visit from the intermediate care people, and I have an appointment with the consultant in Worcester to see what the future holds. I'll update this as soon as more news is available... Colin's progress in recovering from the Chemo is still going well. His coordination and balance have become much better over the last few days. Unfortunately Colin's hair has started to fall out - and we were so hoping that he had got away with it. The Physio checked his ability to ascend and descend stairs this afternoon and declared she was happy that he could manage this safely so long as he doesn't rush! The OT has organised a few things for the home to help him manage and all being well, and he doesn't get the bug which seems to have hit the Ward in the last 24 hours, he might be discharged from WRH tomorrow. We then await what the Consultant and team have in mind, if anything, for future treatment and will hopefully discuss this at the clinic appointment next week.
Jane. I visited this afternoon and Colin is much the same if a little tired, which could be because he's trying to do too much! He is getting on quite well on his feet and we took a walk up and down the Ward corridor again, with his frame. Whilst doing this we saw a notice displayed in the corridor about Tumour lysis syndrome - will leave you to google this, but Cytarabine (one of the Chemo agents Colin was given) is associated with this! I had a quick update from the Staff Nurse on his condition, who told me that his blood counts are still on the rise and the Creatinine levels still on the decrease - which is good news.
Jane. An update from yesterday when a lot went on. Consultant pleased with the progress kidneys are making although they have still not returned to normal. Blood count is up and means the aprons can be dispensed with altho' we still have to be ultra-careful not to give Colin any bugs!
Physio and Occupation Therapist visited to carry out an assessment. Physio is pleased with Colin's progress - his muscles are quite strong, and assessed his walking in the corridor. She also adjusted his walking frame to the correct height - it was much too low! She has given him exercises to do and will assess him on Monday with the stairs. OT went thru' what we could have in the home to help with rehab. This was all useful stuff. There is still a problem with speech and writing. Hopefully the speech therapist will be able to visit soon. There is still a small amount of nausea which makes choosing meals a day early a bit difficult! The hand coordination in terms of being able to use cutlery is improving thank goodness. Am visiting later on and will see if there has been any improvement. Jane. And what's more, Colin has felt well enough to get out of bed, dress in day clothes and sit in his chair. This is the first time he has sat (correct use of the verb!) in the chair for days and days, so things are improving. He is still neutropenic (barrier nursing still in place), his kidney function has not yet returned to normal and he's still receiving antibiotics. Walking is slightly better again and probably helped by the disconnection of the drip, but there are still coordination problems and some speech difficulties. We carried out an interesting experiment and discovered that Colin's handwriting is as good if not better carried out with his eyes closed as open!
We had a useful chat with the specialist haematology nurse today. She has chased the echocardiogram, which was mentioned Tuesday and still not happened, and arranged for speech and occupational therapists and Physio to visit. So that's two days on the run Colin's been feeling better. Let's hope it continues. Jane. |
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