My Uninvited Lodger Part 4

Neal is a member of our patient community. In this blog, Neal shares his own no-holds-barred account of being diagnosed with advanced prostate cancer in 2018. Each individual’s cancer journey will be different and it is important to remember that the experiences described here may not resemble your own. This blog explores Neal’s personal experiences and may include content which some readers find upsetting. If you are looking for information on prostate cancer and its treatments, you can access our free information booklet here or download the Vinehealth app. For further information and support, visit our Prostate Cancer Help page.

Catch up on part three of Neal's blog and listen to his episode of our podcast, the Prostate Pod.

20th April 2020


Surgery closed to patients, only treating Covid-19 and had to travel to another surgery in the group for my hormone therapy injection.

10th June 2020


Blood test at the Pathological Laboratory, made a timed appointment in advance and mask to be worn at all times.

16th June 2020


Telephone appointment with my consultant. Blood tests normal, my PSA was exactly 1.00 and advised that my peripheral neuropathy is a combination of sensory and motor – I have got muscle weakness in legs, cramps/spasms in my legs, cannot walk long distances without leg pain, occasional stabbing pain in the soles of my feet etc. (Before you say anything, I am becoming a right pain!).

Pains in my hips and knees, agreed by the consultant that an MRI is required.

18th June 2020


First visit by recommended physiotherapist to assess my balance problems. Agreed to weekly visits and daily exercise programme sent to me.

30th June 2020


Attended hospital for my MRI, completed in advance a detailed questionnaire.  Placed in this tube-like structure (ideal if you are claustrophobic) and told to lie perfectly still and not move a muscle for a minimum period of 20 minutes. In case you feel the need to disobey the instructions, you’re strapped in for the whole period.  Only bonus, allowed to remove my mask but big problem if you need to empty your bladder etc. Extremely noisy and told the magnets inside the machine moving around were responsible.

If you would like to speak to someone who has had similar experiences to yourself, Tackle Prostate offer a free helpline on 0800 035 5302 run by prostate cancer patients.

7th July 2020


Telephone call from Cancer Nurse, MRI didn’t disclose any new tumours.

13th July 2020


Next hormone therapy injection, queued outside the surgery and not allowed in until the nurse came to collect. Usual procedure in respect of the injection, informed nurse of my hip/knee problems.

Unable to arrange a face-to-face consultation with my GP, I eventually paid to see a private GP who diagnosed as follows.

  1. Osteoarthritis in both hips but not severe enough at the moment to necessitate surgery.
  2. Wear and tear both knees not severe enough to warrant an MRI.
  3. Probability that arthritis in other joints (now having problems with neck, shoulders and fingers).

Prescribed codeine tablets, only to be taken (maximum 4 per day) if in severe pain and discussed the side-effects.

7th August 2020


Noticeable for a few days, legs especially the left very swollen. Telephoned my surgery and appointment made for later that evening at the Urgent Treatment Centre at my local hospital. Queued outside and eventually had a physical consultation with a GP. No DVT or diagnosis but unless swollen legs get worse, no further action is required.

10th September 2020


Appointment at private hospital, right leg examined by consultant who advised benign and not cancerous growth which he was going to remove by burning (said sensation would be like when you burn your hand on the oven).  Requested that he examine my left leg which appears to be swollen during the day but normal on awakening in the morning. Swelling due to retention of fluid and diagnosed as peripheral oedema and not life threatening.

14th December 2020


Telephone appointment with my cancer nurse and we discussed the following: –

  1. Consultant very pleased as blood tests all normal and PSA now 0.8.
  2. Next hormone therapy injection on the 30th
  3. Discussed medication/treatment (in general terms) if/when the situation changes.
  4. Discussed BRCA gene test prevalent in USA which is dependent on your family history including parents disease/age at death and if any siblings.
  5. Discussed drug approved in USA – Olaparib, proving successful for certain individuals with my disease. Subject to clinical trials in UK but not yet approved. (Currently used successfully in the treatment of ovarian and breast cancer).
  6. Next telephone call probably by cancer nurse in 4 months’ time. Blood test form would be sent to me separately online.

Macmillan offers confidential support to people living with cancer and their loved ones. Call their Support Line on 0808 808 00 00.

30th December 2020


Last hormone therapy injection for 2020, usual procedure “sharp scratch” as per the nurse and pain in shoulder for 2/3 days.

31st December 2020


Final physiotherapy session for the year concentrating more on my neck and shoulders. Finding the physiotherapy sessions very enjoyable and positive, always look forward to our meetings. Balance problems definitely helped by weekly sessions and regular exercise programme. Neck pain causing great problems and very time consuming for both me and the physiotherapist.  

Unfortunately, due to Covid-19, agreed to defer next appointment until 4th February but need to maintain daily exercises as far as possible and try not to fall off one of the items of equipment!

14th January 2021


Men’s Cancer Support Group, meeting down to five participants. Wide ranging discussion in respect of our mental state and problems with NHS administration. Also discussed Covid-19 (nobody as yet has had their first vaccination) and how to fill in our days if not working i.e., retired. Next meeting fixed for the 11th February.

11th February 2021


Men’s Support Group meeting, 7 with a returning member who I have never seen before. Discussed amongst other topics how we cope with anxiety about our physical / mental condition, how to exercise some sort of control (i.e., knowledge is power, time planning our day), immunotherapy and that private medical insurance means the ability to have zoom meetings with oncologists which is not available in my situation. Finally, free access to meeting with a nutritionist, extremely helpful and sent me a detailed diet sheet.

The charity, Mind, has information on how to access support and services for mental health on their website.

11th March 2021


Men’s Support Group meeting, informed by chairperson that two of our members passed away one from the last meeting and one from a previous meeting. Very subdued as only 3 present (4 decided not to continue) for various reasons. Discussed various subjects including Covid, NHS and private treatment etc, last meeting before Passover. Waiting information as to whether the group will continue or be added to or amalgamated with another group.

8th April 2021


Men’s Support Group with Zippora (Chai Cancer Care) only 3 present but incredibly positive and productive general discussion about a multitude of subjects (not all related to cancer) and interesting new member, who unfortunately has been diagnosed with an incurable cancer.  Next meeting fixed for 6th May.

16th April 2021


Cancer telephone appointment with Oncology Nurse: –

  1. PSA 1.00
  2. Bone markers – stable.
  3. All other blood tests normal.
  4. Length of time on Prostap does not impact on success of secondary treatment.
  5. If PSA were to double or how I am physically to change, action would be taken.
  6. Need a CT scan before change in treatment.

Next appointment in 4 months’ time, requested blood test form to be sent by post, received.

If you have been affected by any of the issues raised in Neal's blog you can find details of organisations that offer support and advice here:

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