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• adele12

  

  • 20 posts
  April 1, 2012 5:10:17 PM WATime

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  Had a phone call from Mum telling me she had an "accident". This hasn't been the first time. On the two other occassions I thought that the Sandoz Phosphate might have been responsible as one of the side effects is diahorea. However, these days Mum isn't taking it as often if at all.

  I think it is the Cancer. She has been complaining of Sciatic kind of pain (burning in the legs). She does have the Mets in her spine.

  Geez I am worried, especially for Dad. It frightens him and it really isn't very nice to deal with. Feeling really crushed. Mum and Dad are suffering, it is really killing me. :(

  I love Mum so much, I wish there was an end to all of this. I really so need a miracle.

• SueB

  

  • 52 posts
  April 2, 2012 9:23:22 AM WATime

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  I feel for you Adele, it must leave you feeling so helpless to know that your Mum has to deal with cancer. I can only suggest that you don't make assumptions that will scare you and everyone around you. I'm not suggesting you don't acknowledge what's happening, but it would be useful if you take a few deep breaths and smile when you walk into the room with your Mum and Dad. Lots of the drugs and treatments do indeed have some challenging side effects and I guess it’s for the Medico's to track and treat those. I’m sure that when Glenys (Our wonderful Breast Care Nurse) picks up your post she will be able to provide you with some information and links for support - for you, and for your Dad. Hugs to you, Sue x

  69yr old Mother of 2 adult daughters and I have 6 g/kids. Diagnosed November 2014 with reoccurring BC.  The journey continues..

• adele12

  

  • 20 posts
  April 2, 2012 7:31:36 PM WATime

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  Thanks Sue. Yeah try not to make assumptions and try to keep smiling for Mum and Dad's sake. Love them very much. :) XO
  
• Glenys

  

  • 162 posts
  April 2, 2012 8:41:21 PM WATime

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  Hi Adele.
  It must be so very difficult to learn of more difficulties your mum is experiencing, especially when you feel unable to help. This situation must be very hard for your mum to deal with too!
  
  It seems unlikely the loss of bowel control would relate to the Sandoz Phosphate - not commonly known to cause such side-effects. It is possible this could relate to nerves affected in the spine - possibly from the cancer or the medication she is having. Again no-one can be certain of the cause or ways to resolve it without your mum having this assessed by her team. It's also very possible an adjustment to medication or treatments may resolve this.
  
  The most important aspect is good communication with the treating team to sort out and get straight onto dealing with any problems before they become worse. An open line of communication becomes the vital link for your mum - is there someone in her treating team she feels she can contact and talk to if new problems arise? (rather than telling you when you may not be in a position to help). Having a contact person/s and phone numbers would be invaluable for her.
  
  As Ness commented before, sometimes people find it easier to 'pour out their woes' to the ones they love (or one in particular) - often not realising this adds to the difficulties of dealing with all of this for their family. That's when it is so very important to make sure you have good supports in place to help you be strong for your mum and dad. If your dad has not had an opportunity (or not taken up the opportunity) to talk with someone to help him understand, this may also be very important in helping him to manage .
  
  If you've not had success with finding contacts & supports for your mum through numbers I've provided previously (Cancer Council, Cancer Nurse Coordinator Peggy Briggs, Breast Cancer Care WA), please let me know and I will endeavour to explore further options.
  
  Please take care and stay in touch.
  Glenys xx

  The Click Breast Care Nurse 

• adele12

  

  • 20 posts
  April 3, 2012 12:56:08 AM WATime

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  Thanks so much Glenys. :) I have been in touch with the palliative care team but nothing is happening in a hurry and now we are heading towards Easter. I hate the breaks, worried that Mum has enough medications and scripts - always miss one. They did mention talking to her GP and reviewing her medications, using something better than Morphine and using Denmensusab (think that is how it spelt). They talked about organising for Dad to speak to a Social Worker and Alison Fosberry. I met Alison when I was staying with Mum at Crawford Lodge when she was getting radiation. Alison was amazing. Still waiting to hear something.
  
  Yes I think it could be the bone mets in Mum's spine and maybe it is the Morphine "relaxing" everything. She told me that it smelled like medications. It would be alot on her tummy. Poor Mum :( Mum has complained of "burning" in her legs. I looked it up, though there are several reasons it pointed to sciatica (nerve). She has alot of pain in the lumbar area, stiffness and numbness if she sits for too long.
  
  Worried, wish it was even just a bit better for them. Once again, many thanks. xx
• Ness

  

  • 81 posts
  April 3, 2012 3:35:24 PM WATime

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  Sorry to hear things are not going smoothly. Thank you for sharing your thoughts and feelings with us - makes it so much easier on you to share the load.
  
  I am not a nurse or anything so can't help with the medicine stuff - but here to listen and offer some support for you!
  
  I am sure your mum and dad know how you feel and are benefitting from your love and support, It's a terrible time to go through and we feel so helpless! You are doing everything you can and should be proud!
  xx

  The Click Project Coordinator
  

  Daughter-in-law and niece of breast cancer "thrivers"!

• Glenys

  

  • 162 posts
  April 3, 2012 7:37:46 PM WATime

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  Hi Adele. You may be right, it may be the tumour in spine causing pressure on the sciatic nerve - which is turn causes disruption to the sciatic nerve pathway down the legs. Nerve pain is most commonly experienced as a 'burning' sensation - with a 'pins & needles' type of altered sensation. Many women experience this pain after childbirth due to damage to the sciatic nerve. Incontinence may also result, - or medication may affect things too.
  
  Sometimes it's easy to lay all the blame on cancer, whereas there may be several factors going on. Previous damage may be worsened by tumour, or new injury to the area, or other problems. Osteoarthritis can also cause severe sciatic nerve pain (although I know this would seen less likely to be the cause given the situation). Treatment to ease bony mets pain often includes radiation to the area - is this part of the plan for your mum? Or has she already had radiation to this area?
  
  The critical aspect is review with GP & palliative Care team to ensure correct assessment and management.
  
  Great you met Alison Fosbery previously, however she is no longer in that role - that is now Peggy Briggs! Please call her if you have not already done so. Her role is to ensure these aspects are dealt with by the appropriate people.
  
  Sometimes it can take a bit of persistence, phone calls, discussions and plans to get things in place. You're right - sometimes the wheel turns too slowly and needs some pedalling to speed it up - but all this can happen! It's connecting the right services through at the time your mum needs it - and your mum (and your dad and yourself!!) deserve this support.
  
  Please do not lose faith - I know this can be a very frustrating process but it can (and should) come together - hopefully soon.
  Hope you do get some rest and ease to your own stress around all of this.
  Cheers, Glenys xx
  
  

  The Click Breast Care Nurse 

• adele12

  

  • 20 posts
  April 4, 2012 12:45:56 AM WATime

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  Thanks again Glenys :). I did ring Peggy and she forwarded me on to Sara Graham the Breast Cancer Care Nurse in Geraldton. As a result I spoke to a member of the Palliative Care Team and a Pallative Care doctor which Mum was seeing at one stage when she lived in Geraldton. I was told by Lindsay that Alison Fosberry is in Geraldton. Must follow this up and see where they are at.
  
  I believe an incontinence nurse from the local hospital is going to see Mum Wednesday morning. Hope it helps.
  
  Thanks so much for your support and kindness. XXXX
• SueB

  

  • 52 posts
  April 4, 2012 8:38:33 AM WATime

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  I'm so very glad to hear that support is happening. I hope you can relax more now knowing you have got some professional help in place. Stay in touch and let us know how you are doing Adele. Hugs, Sue xxx

  69yr old Mother of 2 adult daughters and I have 6 g/kids. Diagnosed November 2014 with reoccurring BC.  The journey continues..

• adele12

  

  • 20 posts
  April 5, 2012 2:18:54 PM WATime

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  Thanks Sue XX Glenys, Mum did have some radiation on her hip where she had the hip replacement. It appeared to help for a short while. Mum was offered radioisotope treatment as the bone mets are throughout but decided not to go ahead with it, as it would involve more hospital, side effects and was highly likely not to be effective as well as it not being a cure, so looked at other ways to deal with the pain. It was pretty traumatic for her getting the radiation therapy, she had just had a hip replacement and had to negotiate getting into transport from Crawford lodge to Royal Perth Hospital. She was in huge amounts of pain at the time, was up all night then when I did get her in there I got into trouble for not giving her enough pain medications. Laying on the bed for the radiation was hellish for her. Tried to get the radiation done at Sir Charlie Gardiner as it was right behind Crawford but that wasn't an option, as she have to change treatement teams/doctors or something - too much to reorganise. Unfortuneately, radiation can't be done here in Geraldton. Thought I'd fill you in as you asked in a previous post.
  
  Thanks XO
  
• SueB

  

  • 52 posts
  April 5, 2012 3:25:26 PM WATime

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  Oh gosh...what an experience!! I sure hope that you're Mum's pain meds can be sorted so that her future trips to RPH for radiation can be a whole lot more comfortable. Is she booked in for more radiation? Are you still at Crawford Lodge. I hear it is a lovely place to stay and quite convenient.. even to RPH. xxx
  

  69yr old Mother of 2 adult daughters and I have 6 g/kids. Diagnosed November 2014 with reoccurring BC.  The journey continues..