My Uninvited Lodger Part 2

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 one of Neal's blog, read his first ever PCR article and listen to his episode of our podcast, the Prostate Pod.

Prostate Cancer Stories

My Uninvited Lodger

My Uninvited Lodger
Prostate Cancer Stories

Neal’s Story: Tales of the Unexpected

Neal’s Story: Tales of the Unexpected
Prostate Cancer Stories

Prostate Pod- Neal Bloom

Prostate Pod- Neal Bloom

1st August 2018

More episodes of pain caused by a blockage, all cleared by the lovely nurses and told I could now wear a smaller catheter tied onto my knee. Discussed with staff that walking was a problem, only journey between the bed and my armchair and I was wobbling. My wife arrived and amused to find me walking with a zimmer frame accompanied by two occupational therapists who were returning tomorrow to ascertain if I could manage stairs unaided. Informed by my wife that she was employing a professional carer who was moving into our house for a couple of weeks, so get used to the idea!

2nd August 2018

Registrar doing the rounds, catheter not fixed properly so instructions given to remove. Occupational therapists tested my ability on using stairs and satisfied no problems. Following breakfast, my first hormone therapy injection. Initially not a big deal but shoulder ached for the next few days.

3rd August 2018

Second Saturday, a deputy consultant accompanied by the staff nurse doing the “round”. Queried why I couldn’t be discharged, I explained that my wife had two operations in 2017 to remove a brain tumour, I am her carer.

4th August 2018

First signs of a side effect from the hormone injection, beginning to sweat profusely and very uncomfortable. Told by nurse, if no further blood in my urine, I will be discharged this afternoon. Given a sample bottle and analysis showed no problems.  One more visitor, after he left, put on my clothes, discarded my sexy hospital socks, said my goodbyes, and was told to sit outside the bay until my transport arrived. Returned home, introduced to our carer and told by my wife to sit quietly (as much chance as AFC Bournemouth have of winning the Premier League).

18th August 2018

Requested quotes for live in carers and had a meeting with a London based firm- too expensive and would probably exhaust our savings in a very short period.

Completed questionnaire from liaison between hospital and Macmillan, to look into my mental state and establish a care plan.

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.

19th August 2018

Obtained several booklets from Prostate Cancer UK and Macmillan, both organisations extremely helpful. Researched via Google and discovered that advanced prostate cancer survival average is about 3.5 years. Extremely upsetting and agreed with my wife not to conduct any further research as it could affect our mental state.

21st August 2018

Pre-treatment meeting, my wife and I met the registrar, oncology nurse and liaison person. Discussed my treatment. Given contact details for oncology nurse and leaflet on chemotherapy (Docetaxel). Told I would be given a tour of the chemotherapy area prior to first session, never materialised.

Separate meeting with liaison person to review my answers to the questionnaire and discuss my concerns.

15th September 2018

First pre-chemotherapy meeting. Now required to take an additional 8 steroids on the day prior to each session of chemotherapy. Height and weight measured. (I was beginning to rattle at the thought of so many pills, when are you supposed to eat?)

17th September 2018

First chemotherapy session (went alone silly boy), nursing staff extremely calming.  Area consisted of ten individual bays plus additional side rooms. Given an anti-sickness pill and signed a disclaimer voiding the hospital of any responsibility if the insertion of the chemotherapy pack caused any damage to my veins or tissues. A needle via a cannula was initially inserted to “flush out” my system which took about 15 minutes. Big pack of Docetaxel appeared and lovely needle was inserted via the cannula into my right arm. Enquired how long it would take to enter my system and was told the average was about an hour.

Given a supply of pills including anti-sickness and for extreme circumstances, an anti-sickness injection pack which would have to be administered by a district nurse, Dexamethasone, Imodium and my daily dose of Prednisolone. Also, given a record card with emergency numbers and details of a ward to contact if any of a long list of side effects occurred. No feeling of nausea but noticed that my taste buds seemed different.

9th October 2018

Pre-chemotherapy session with pharmacist, height/weight again measured and weight gain of 1.5kg to be reduced by a diet and exercise plan. PSA down to 3.0 and agreed by pharmacist to write to my dentist to confirm no problems with having any treatment. Finally, for problems with my hands (extremely sore) prescribed E45 hand cream.

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

30th October 2018

Pre-chemotherapy session with pharmacist, put on more weight and heaviest for years. Pharmacist spoke to the oncologist, decided I was putting on too much weight so daily steroids withdrawn.

31st October 2018

Third session of chemotherapy, no problems with the actual process. However, beginning to notice side-effects:

  1. Hair on head beginning to fall out in large clumps, not a lot to begin with (a small percentage has subsequently returned but nothing to get too excited about).
  2. Body and facial hair rapidly disappearing, shaving no longer required (no great change some 2+years later).
  3. Sense of smell and taste buds beginning to alter, unable to determine what I am eating.
  4. Finger nails becoming discoloured and very painful.

20th November 2018

Pre-chemotherapy session, PSA 1.5 and liver function slightly raised. Flu jab completed on the 16th November. Hair loss slowing down but more problems with fingers. Dose of chemotherapy to be reduced.

21st November- 11th December 2018 (inclusive)

More side-effects from treatment:

  1. Pins and needles in fingers, great difficulty in doing up buttons and zips.
  2. Fingers becoming very sore, applying special cream.
  3. Fingers bleeding, twice phoned emergency number supplied by the chemotherapy department but no response, very reassuring!
  4. Sores in nose and small nose bleeds.
  5. Acid reflux – medication prescribed.

12th December 2018

5th and penultimate chemotherapy session.

9th January 2019

6th and final session of chemotherapy and agreed that my wife should accompany me for the first time.  Advised that my PSA was now 1.4. Thanked the staff for all their due care and attention and tremendous support they had given me since my first visit in September.

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:

Prostate Cancer Help

Prostate Cancer Help
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