My Uninvited Lodger Part 3

Neal Bloom

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 two of Neal's blog and listen to his episode of our podcast, the Prostate Pod.

12th February 2019


First meeting with oncologist. Asked various questions and confirmed that my condition is incurable, which was now accepted by my wife.  My immune system has returned to normal so no problems with having a flu jab and dental treatment. Finally, I discussed the “hot flushes” generated by the hormone therapy and was prescribed Cyproterone Acetate which has alleviated the problem.  CT scan disclosed, no further spread of tumours, existing tumours have been reduced, next blood test in 4 months’ time. My PSA slightly up at 1.6 but next Prostap hormone injection on the 18th February. It will take a few months for any improvements to my fingers/hair growth. Told I can exercise normally and go to public places, as no threat to my immune system. Also, issued with a pass to be shown to shops etc, so I can use the staff facilities.

7th June 2019


Telephone conversation with my cancer nurse, PSA now 0.9, CT scan not required unless PSA changes. Sleeping problems during the night, only suggestion from oncologist was to measure the flow of urine and my GP to arrange to see a urologist (at 3.00am, not the first thing on my mind or any other part of my anatomy to measure urine volume). Episodes of breathlessness due to hormone treatment, if it becomes a problem, discuss with GP. Balance problems diagnosed as peripheral chemotherapy neuropathy, will take several months to resolve, if at all.

10th July 2019


Telephoned cancer nurse, discussed neuropathy and lack of sleep. The nurse will contact oncologist as to whether alternative therapy medicine is OK. Confirmation received that acupuncture may help neuropathy and requested that I have a renal function test to ensure my kidneys are OK. Blood test results all normal.

 

If you wish to try alternative medicine, please ensure that, like Neal, you have a conversation with your healthcare team beforehand to ensure that you do so safely.

8th August 2019


Letter received from my cancer nurse confirming that I can proceed with dental treatment.

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.

28th August 2019


GP surgery confirmed that my cholesterol level was above the normal range and my GP prescribed statins (one per day).

3rd September 2019


Arranged 6 acupuncture sessions, first session today. Strange feeling of having several needles put into the soles of my feet and toes.1-2 needles placed between my thumb and forefinger, my hand went completely numb and caused a lot of pain. (Well as they say no pain, no gain!)

24th September 2019


Acupuncture session number 3, now lying on stomach (very artistic pose) as needles inserted including in the back of my knees. Machine used to pass a small electric current through the soles of my feet. Discussed with acupuncturist whether any difference in my balance, no change but surges of pain in the soles of my feet (flare ups) not as frequent.

15th October 2019


Face-to-face meeting with my oncologist.

  1. PSA 1.00 all other blood tests are normal.
  2. Requested CT scan – advised not required.
  3. Pain in right rib area, suggested if severe take Paracetamol.
  4. Still breathless on exertion, see GP.

Finally, as per the consultant, within 3 years of my last chemotherapy session, PSA level may rise as the tumours start to mutate and current hormone therapy injections will no longer be effective. If occurs, they would average the rate of increase in PSA and then decide on what further treatment would be required.

29th October 2019


Cancer Care form completed and returned to the cancer care nurse.

12th November 2019


Telephone conversation with cancer care nurse, very concerned about my answers to the questionnaire, in respect of the future and how my wife would cope. To be sent an exercise programme commensurate with my age and physical situation, (I can still bend down) received and actioned on a daily basis.

19th November 2019


Final session of acupuncture. Approximately 16 needles positioned into the soles of my feet and toes. Used to procedure and small amount of blood, balance not improved but flare ups less frequent and not as severe.

Mental state not great, keep thinking about my disease being incurable and that life expectancy on average only 3.5 years. How would my wife be able to cope on her own? Will the private sector find a cure for my disease within a reasonable timescale? Advised by my wife to contact a cancer charity in London which provides professional counselling.

 

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

20th November 2019


Telephoned the charity and provided a detailed history of mine and my wife’s situation. Completed and sent an online registration form.

Counselling (on a one-to-one basis) provided either by telephone or Skype and will be a regular appointment. A wellbeing form will be sent to me for completion, and I am now officially on their database.

11th December 2019


First session of reflexology, very relaxing but too relaxing as on two occasions, I fell asleep! Informed by reflexologist not uncommon and by massaging your feet, she could ascertain other areas of my body that were extremely tense, shoulders, neck etc.

12th December 2019


First counselling session and discussed the following:

  1. Physical condition, consider daily exercises and walking regularly, try not to be concerned about current physical situation as apart from neuropathy, no problems and OK.
  2. Mental state, try not to think too deeply about the consequences to my wife and search for a cure for my condition.
  3. Going shopping (periodically) together with your wife would be a great benefit.
  4. Great pity as not able to travel to their London office, as would be able to join group activities.
  5. Felt slightly better after the session and agreed next meeting for 16th January 2020.

Counselling sessions held every 2/3 weeks since the initial meeting. Proving of great benefit, as able in an “open” and positive atmosphere to fully discuss my physical / mental state and events that have transpired since the previous session.

Due to Covid-19, sessions in 2020/21 have now switched to Zoom, which is more productive as can both see who we are talking to and our expression and reactions when discussing various issues.

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

8th January 2020


3rd session of reflexology, oils rubbed / massaged into my feet, extremely relaxing but is it helping my balance? No evidence so far of any improvement, my oncologist did say that my neuropathy may not be reversible, and I wouldn’t notice any improvement for several months.

29th January 2020


Informed of the existence of a prostate cancer support organisation and group in my area. Attended meeting addressed by a consultant radiographer who lectured on a new type of MRI which negates the automatic use of a needle biopsy to determine a diagnosis of prostate cancer.

One and only meeting as all other events in 2020 cancelled because of Covid-19.

17th February 2020


Telephone appointment with cancer nurse, all blood tests normal PSA of 0.7.  CT scan not required and general discussion in respect of what medication would be required if/when my PSA starts to rise. Plant based diet of no great benefit to me just a healthy well-balanced diet. Occasional pains in my spine and pelvis, more frequent in my rib, if a problem take paracetamol. Next appointment in 4 months’ time but agreed would be with my consultant, probably by telephone.

19th February 2020


Last reflexology session very relaxing, completed an end of session questionnaire and thanked the Reflexologist for her kindness and consideration in all my treatment sessions.  Has it improved my balance? The jury is still out!

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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