The journey so far.

3 minute read time.

I feel like I need somewhere to write everything down and to try and process my feelings...I'd better start with some background. 

My mum first battled cancer in 2011, she had a persistent cough and sore throat and had multiple blood tests at our GP surgery & was told her white blood count was high so her body was showing signs of infection etc given multiple antibiotics and sent on her way. She didn't give up and kept going back, one time seen by our GP and a trainee Dr who examined her throat & saw something so referred her to the hospital who found a tiny cancerous growth on her vocal chord. She had targeted radiotherapy which got rid of it and she recovered fully. 

Fast forward to 2014 ...Me, my husband and daughter moved back in with my mum as she was struggling with Rheumatoid Arthritis...fast forward again to Nov 2016, mum called me into her room one morning & asked me to look at a lump she'd found on her breast...it was very large so we immediately called the Drs and got an appointment the next day,  less than 2 weeks later we were at the breast care clinic who told her it was cancer in BOTH breasts and her lymph nodes. She would need chemo, a double mastectomy and lymph node removal and possibly radiotherapy. 

The chemo was awful and really knocked her about, she ended up with a blood clot which then caused her to have a heart attack mid way through her chemo treatment, after being treated for her heart attack she restarted chemo, had the surgery and then the radiotherapy. 

She developed lymphodema in March 2018, a lot of swelling and pain in her breast area, they drained the fluid but the site where they drained it took over 5 months to heal, during these investigations into the lymphodema they carried out a CT scan which showed a growth on her sternum. We went to see her oncologist who explained she had bone mets - incurable bone cancer - she was started on Denosumab injections which are designed to slow the spread of the cancer and keep it contained. If it doesn't stay contained then there was talk of more chemo.

Then in July 2018 she was complaining of back pain, she put this down to the lymphodema causing her to sit hunched causing the pain in her shoulder blade, she was also becoming breathless a lot but only when going upstairs etc. We visited the GP multiple times and was prescribed pain killers, one evening in Sept she became extremely breathless and we visited the GP the next day who listened to her chest and advised us to visit A&E immediately as she could hear fluid on mums lung. We did, she was admitted and taken off her blood thinners to allow them to perform the chest drain a few days later. The fluid was successfully drained and she was sent home however before they sent her home the Dr told her the fluid they drained was cancer.

I read her discharge notes this morning and from what I can decipher the cancer on her sternum has gotten bigger and possibly spread to her lungs as there was mention of malignant pleural effusion.  We are due to have an appointment with her oncologist in the next 2.5 weeks (we're just waiting for an appointment letter) she was due to have a CT scan next Friday but they cancelled that as she had one in the hospital and then the oncologist appointment would've been 2 weeks after that so I might call the oncologist secretary next week and see if they have the date yet as I need to get the date to my husband so he can work from home so I can go with mum to the hospital. 

So many thoughts are running through my head...how long will she have left? How will I hope towards the end? Will mum want to go through chemo again? And if she doesn't is thay going to mean she's in pain? How will I explain this to the kids? It's going to be hard on them as we all live under the same roof. 

Anonymous
  • FormerMember
    FormerMember
    <p>Wave&nbsp;So sorry to hear about your mum . She&rsquo;s been though a lot so far .</p> <p>Waiting is so hard . Whatever the results and what your mother chooses to do , &nbsp;you will have the support the specialist oncology &nbsp;nurses. They are so good at being able to support everyone at this difficult time.&nbsp;</p> <p>Mums comfort &nbsp;is most important &amp; she will be given any pain relief she needs .&nbsp;</p> <p>Take 1day at a time .The children will obviously know that she&rsquo;s poorly so just be as honest as you need to. Depends on age of children how much they , need to know or will understand.</p> <p>Everyone&rsquo;s life is so different, you &nbsp;have been strong &amp; coped Up to this point &amp; you will find ways &nbsp;to deal With whatever comes next</p> <p>&nbsp;ensure you &amp; your family take help when it&rsquo;s offered and find support if you need . people who love you &nbsp;are always there &amp; will want to help&nbsp;</p> <p>online community is a good place to release your feelings as many people will be in the same or similar position &nbsp;</p> <p>you will never be alone&nbsp;</p> <p>sending you huge hug x&nbsp;</p>
  • <p>Thank you for your reply </p> <p>The children are only 7 and 3...mum was saying to me the other day neither of them will remember her being well, they&#39;ll only know her as someone that couldn&#39;t really play with, that they had to be careful with and quiet around. It&#39;s hard and I&#39;m jusy dwelling on the bad and I think that&#39;s because she is really depressed and has resigned herself to the end being close when it might not be so hopefully the oncologist can shed some light either way.&nbsp;</p> <p></p> <p>So far she hasn&#39;t been given the details of a Macmillan or Breast Cancer nurse contact details...so I&#39;m going to push for someone that we can speak to after we&#39;ve seen the consultant as we always have questions a day or so after seeing him once we&#39;ve had time to process the info etc but the length of time between seeing him is too long to wait whereas if we could speak to a nurse about our questions, feelings etc then that would be a big help.&nbsp;</p> <p></p> <p>Xxx</p>
  • FormerMember
    FormerMember

    My mum has just been diagnosed with secondary liver cancer and I was on here looking for posts related to that and I stumbled across yours. 

    The cancer experiences are not even remotely the same but I am sat here with tears streaming just reading your first blog post and I can relate to so much in this with the kids and being scared for your mum. 

    My kids are 1 and 4, I’ve had so many tears this week because she wasn’t well enough to see my son turn 1 and celebrate with him. 

    One moment you have an active parent/grandparent and the next they are suffering in the most awful way and you can’t do anything but support them whilst your heart is breaking inside and no doubt holding down a job and keeping things ‘normal’ for the kids. 

    I don’t have anything useful to add, only that I feel your pain and I totally understand.

    xxxx

  • <p></p> <p>I am so sorry to hear you&#39;re going through a similarly bad time with your mum. It&#39;s awful and I spend so much of my time wondering if this will be &#39;the last...it was my daughter&#39;s bday in Sept and she was asking her Gran if she could come to her party and it breaks my heart that she&#39;s missing out on stuff but she&#39;s deteriorated so much over the past month.&nbsp;</p> <p>She was in hospital last week as she had an infection and blood clots in her lung and now she&#39;s breathless at the slightest thing.&nbsp;</p> <p></p> <p>How is your mum coping? Mine has spent most of today talking about sorting out her funeral and will etc as she doesn&#39;t want me to have anything to worry about as I&#39;m an only child and her and my dad are divorced.</p> <p>I&#39;m always here if you need to chat to someone who&#39;s dealing with the same situation.&nbsp;</p> <p>Jade xx</p> <p></p> <p>X</p>
  • FormerMember
    FormerMember

    I am so sorry to hear what you are going through.

    My mum had breast cancer two years ago and has just found out she has liver mets. I have two children (5 & 9) and I’m also an only child so I don’t have siblings to lean on for support.  It was my birthday today and I’ve really struggled to keep smiling, wondering if this is the last birthday I will spend with her. 

    Mum has to go for an appt with oncologist on Wednesday to find out her prognosis and treatment plan. I am dreading it as I know that all we can hope for is for it to be managed for as long as possible. I haven’t yet told the children as I wanted to wait until I have all the information to answer their questions as much as I can. It’s not a conversation I want to have, they adore their grandma, she’s like a second mum to them.

    You’re not alone in this, if you need to chat then happy to listen.

    Charlotte x