Chemotherapy Diary - Cycle #4: Day 18

Note to readers: I am painfully aware that I am late uploading my mum's chemotherapy cycle #4 daily diary.  A commitment to post everyday has become a commitment to document everyday of my mum's treatment during cycle #4 but I've not managed to upload it on a daily basis.  It is upsetting the flow I had in mind but forgive me, it's the best I can do.  I have documented the events on a daily basis by hand (a true diary actually!) but not managed to upload it consistently.  My life as a carer takes priority, my work and career second and raising awareness of ovarian cancer, something I do in my spare time.  

Day 18 of each cycle for my mum and I has always been very, very busy with a day full of important medical appointments.  My mum's medical team is made up of several specialist teams that together, treat her cancer holistically.  It was not easy at the beginning, grappling with the multiple teams, understanding who does what and where their boundaries lie.  Her medical teams consist of:
  1. Oncologist - treating her ovarian cancer
  2. Lymphdema clinic - treating her Lymphdema 
  3. GP - for general concerns
  4. Stoma care - a team that are guiding my mum through life with a stoma
I now have 2 A4 pages in her medical notebook, dedicated to contacts.

We started the day off with an appointment at the Lymphdema clinic which at 9am, faced with heavy traffic, were very nearly late, arriving at exactly 9.03am.  Phew!!!
The appointment  went well since my mum's lymphdema has largely gone away.  My mum's cancer was in the lymph nodes causing fluid retention in the legs and stomach.  The 9 hour surgery removed those tumours on her lymph nodes but some lymphdema remains.  The nurse therefore showed us some massages that can be done at home to disperse the remaining fluid in her ankles to be absorbed back into the organs.  
NOTE: massaging cannot be done during chemotherapy treatment unless explicitly advised by your oncologist. 
It felt good to be able to have some positive things that we could do ourselves to aid my mum's recovery.  I truly believe that the road to a healthy recovery is through team work, the full medical team, the patient and the close support system doing what they can to help.
The Lymphdema team have also previously given my mum some thick, black stockings which work by physically squeezing the fluid in her legs, reducing the swelling.  I have to say, getting them on was like a small battle and has brought us lots of humour.  These stockings no longer fit now as the nurse reacted "They're falling down!"  To be honest, we hadn't noticed, assuming they'd been stretched by the tug of war we'd been playing.  But they really do work!  So good news, my mum's stockings were to be replaced by shorter socks which would concentrate on the swelling in her ankles.  Though uncomfortable to have been wearing thick socks during the summer, we will take non-invasive treatment's that her improve her quality of life any day!

We then moved to the main hospital where we had an appointment with her oncologist.  This is the main appointment which is most difficult to arrange.  Therefore, the arrangement of all other appointments generally revolve around this appointment with the oncologist for which, an appointment is very difficult to get hold of.  This check up is a review of my mum's current treatment and to assess her suitability to proceed with the next cycle of chemotherapy in 4 days' time.  Yes, how quickly the next cycle comes along when your body is still recovering.  
As ever, there was a surprise when we went to the appointment,  We discussed one of the side effects in great detail.  Some people, can experience a tingling sensation in their fingers, hands, feet and toes.  I've asked my mum to describe it to me and she says it's much like when you have pins and needles.  However, with pins and needles, instinctively, we remain still until the sensation passes as we know it will go soon and walking on it makes it hurt more (screaming in pain and agony no less).  In this case, the tingling or pins and needles sensation is constant.  Our oncologist told us that it was the damaging, of the particular chemotherapy drugs she was taking, on her nerve endings, that carry messages between the brain, the spinal cord and the rest of the body, called neuropathy.
For most people, neuropathy will reduce or cease at the end of the treatment but it is a fine balance between giving her the drugs she needs to stop the cancer spreading and causing permanent, irreversible damage.  With that in mind, the oncologist was proposing not administering one of the two chemotherapy drugs my mum normally had.  This was difficult to hear since the treatment my mum is having is going well.  However, Independence and mobility are extremely important to her and not being able to do these things would affect her quality of life as she said, at the moment, I can still walk even with a stick.  She did not want to lose that.  My mum is being treated at an outstanding cancer hospital by a highly experienced team that we trust to make the right decisions,  After 40 minutes consultation, where all else went well, it was time to move onto the next.

Stoma Care
Finally, we dropped in to see the stoma team.  My mum's stoma is only 3 months post surgery.  She has her bowel outside of her body so the stoma team, continue to monitor her until the stoma is more settled and she has adapted to this change in lifestyle.  And that is all it is.  A slight change to the lifestyle and no more inconvenient than to be honest, having a period.  At the moment, the stoma still swells occasionally and as she was in hospital but 2 weeks ago with constipation it still gets blocked.  We are also extremely grateful that we are able to get vital medical supplies on the NHS which is a great help as the additional cost would make an already difficult medical condition all the more stressful.  So we checked in with the stoma care team who assessed the progress of her stoma, which thankfully looked healthy and topped up our supplies.  Stoma care requires regular supplies of:
  • colostomy bags
  • wet wipes - to keep drainable bags clean
  • bin bags - to dispose used colostomy bags after the change
  • adhesive remover spray
  • barrier spray
Imagine, in some countries, people have to absorb the cost of these medical supplies and make do without should they not be able to afford them.  Adjusting to life with a colostomy has not been easy and is still a daily learning progress.  Having these supplies delivered regularly makes it easier to deal with the change.  After making sure we were ok, we left, making a subsequent appointment in 3 weeks, to align with my mum's next trip to the hospital.

Car park office
I did say it was a busy day!  We then went to renew our car park pass.  This may seem insignificant to you but it's extremely significant to us.  Car park charges are horrendous.  In average, we will spend a minimum of 3-4 hours at the hospital at any given time.  Sometimes, there for days when my mum has been admitted without leaving.  Hospital transport is reserved for those with needs and is also inconsistent.  Public transport would involve several hours of commute for my already frail mum.  Driving is the most sensible option and waiving car park charges is tremendous assistance to us as long term patients.  When we have to visit other hospitals, because specialist equipment is only available there, it has cost me between £5-6 for a few hours.

After sorting out the car park ticket we were free to go home.  My mum was very happy at that as she was getting very tired.  I hope that gives you insight into life with cancer 



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