Radiotherapy For Neck Lymph Nodes Following Chemothetapy At Another Site During The COVID Pandemic
The most wonderful experience I have found throughtout my care is how outstandingly professional, dedicated and caring the teams and everyone in the two sites I have been treated at: have been. These sites being The Lister Hospital in Stevenage for my chemotherapy and then Mount Vernon for ny radiotherapy.
The cordination and pathway for my treatment ran very smoothly. I should point out that I am a Registered Nurse so maybe this gave me an advantage over those not used to the jargon and pathways of NHS care and treatments etc. However during my care I also witnessed and heard some amazing journeys others had endured or were experiencing.
A t the start of my journey I was given a detailed booklet from my Specialist Haematolgy/ Cancer Nurse from Lymphoma Action on Hodgkin's Lymphoma which proved so helpful. I was also given leaflets with the Specialist Nurses contact details and telephone numbers and emergency telephine numbers for both sites which also proved so helpful . I live alone and I required two hospital visits , one resulting in an overnight stay diue to side effects from the harsh and rather gruelling chemotherapy. On both occasions I used the numbers : I received excellent care. However I did think having to attend via A and E on both these occasions put an unnecessary strain on a busy A and E staff at Lister Hospital but understoid the logistics behind it so coped better than perhaps others not so familiar with A and E might. It was especially frightening because of the fear of COVID . I was thankful for ambulance staff who looked after me in their ambulance for a considerable time while I had to wait for a suitable isolating side room in A and E to become available. I must say I felt guilty at the time etc I consumed realising they probably had emergencies elsewhere. I had been relectant to attend but the Specialist Nurses managed to persuade me otherwise. I went home after both hospital emergency attendances feeling lots better and and less nauseated and hydrated and very well cared for
The cancer unit at Lister is newish and very well run. The nurses knowledgable and supportive. I also liked the way the pharmacists came to the patients and went through their take home drugs with them and then arranged for them to be dispensed from the cancer uit to take hime. It saves immunocompromised patients having to wander around hospitals to find pharmacy and having to queue in busy waiting areas. This should continue even after the pandemic passes.
I was also very grateful that phlebotomist appointments were available if booked in adavance at my GP surgery for the same reasons. I felt safer and more relaxed attending at my GP surgery. This could be coordinated for all patients with immunocompromised conditions as some do not realise this is available. . Queing in a busy hospiral pathology department for blood tests is not good if having treatments and feeling unwell.
My radiotherapy appointments are by telephone because of COVID but I was also given an extra numbers to call if plans etc should cause concerns which is helpful.
I was particularly anxious about undergoing radiotherapy for neck lymph nodes as my Father underwent radiothetapy for throat cancer years ago at Mount Vernon . The memories were frightening and poignant. as was his eventual passing some time after further surgery and later haemorraghing. . My enlarged lymph node were near my carotid artery and I was petrified. .
I cannot thank the staff at Mount Vernon enough for understanding and reassuring me and listening to my fears and taking on board my sadness. To have the time to tallk before the start of my treatment helped me. It s sometimes the little things that make a cancer journey less frightening . The listening and understanding reasssurances. The handholding and even the fact that the staff played relaxing music, they knew I liked during the mask wearing treatment that panicked me all helped.. I did not feel rushed at all. The helpful relaxing breathing excercises one member of staff made me take really helped too. I cannot emphasis enough how much all this helped.
All in all I hope this small glimpse into some of my cancer journey has helped from a patient perspective. I was heartened as a Nurse to see how well coordinated and successful the work all NHS staff do.is Everyone is and was amazing. The porter / security at the side entrance I came in on everyday througtout my treatments always greeted me with a smile and encouragement. The housekeeper when admitted ovenight at Lister went out of her way to serve meals etc and offer warmth even after a long shift patterns. The calm , professional reasurances, information knowledge and support and advice from both clinical specialist Consultant and Professor was spot on.
When working in the NHS myself before taking my NHS retirement I often used to feel exhausted when working and never felt there was enough hours in the day to complete my care of others. . I now know that our work and those of all NHS workers is so appreciated and so well cordinated . The team spirit is so highly valuable and does still shine through .and makes all the difference despite how burnt out many feel inwardly. .
I think COVID has shook us all and it shows through in the way the NHS Cancer Services at both The Lister Hospital and Mount Vernon have stood up to the challenges. Through these challenges new ways have been found. Some of these new ways have not been detrimental to my care but may have enhanced it.
I have needed time and space to digest what has happened. The calm and isolation has given me time and space to do this. However to know that help is a phone call away is so reasurring.
Looking forward to the cordinating of a new site. I can only say that the M25 is a busy road as most know . Thank goodness Mount Vernon were able to co ordinate early slots for me to enable my sons to drive me as I would not have managed the journey otherwise. It was also really reasurring that Mount Vernon were aware of traffic disruptions and they factored for that. .Parking permits were also appreciated. If Watford becomes the new site I know the journey there from East and North Herts is not the easiest . Also parking and accessing Watford General is a nightmare.
Just as an after thought it would have been helpful to have been able to undergo my COVID Swabs prior to radiotherapy at Lister rather than Mount Vernon . Instead my son had to drive me 50 minutes each way ( on a good day) to Mount Vernon for them . If taken at Lister and the results made available to Mount Vernon through ICE or System One for example it would of made life easier . IT made need updating to allow for this. I could of driven myself locally to Lister without my sons work days disrupted and all that extra driving and road congestion. .
Being able to have my PET Scan at rhe Lister via the mobile PET Scanner was so helpful.
My journey continues and I am feeling very hopeful and thankful to everyone. Now is the time I am reflecting and coming to terms with what has been a life changing experience. I am aware of the vital support systems in place such as the Macmillan financial services etc.
It has been very helpful to take part in this as I have been able reflect.
Moving forward it is wonderful that there is stronger bridges between the gaps of hospital and community care . The patient can and should be able to access support from both in a co ordinated way . The communication pathways between both have improved over the years and I feel this should be enhanced further. IT systems have improved to allow this but can be tweeked. .
I would like to see the referral systems made simpler and advice for GPs from Cancer Specialists made easier to access Also the referral pathways for new cancer patients made quicker and more successful. Time is vital in cancer diagnosis.
I feel very privileged and thankful to have received the amazing care I have by such dedicated hospital NHS services at both Lister Hospital and Mount Vernon Cancer Services.and at my GPs. Even though Mount Vernon seems a l9ng way away.
Sorry this is a bit uncordinated I blame the writer entirely .
Thank you all so much. Take good care and Godbless you all. . I 🙏❤