kevinj
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Dear Darla, Lainy, Melinda, Catherine, Gavin and All,
Thanks again for sharing your experiences (and sometimes those of your loved ones) with me over the last 10 months. So many beautiful, very helpful and sometimes very touching experiences, indeed. All very greatly appreciated. Thank you
As always, I have to make one very important technical and medical addendum about care arrangements in the UK (perhaps it might just be England and Wales) and accessing the National Health Service. The following will not be of interest to those living outside of the UK.
As Mum began to feel the increased effects of the bone mets in August, she was place on various opiods. My posting above recite our difficult experiences with Mum on opiods.
Three weeks prior to Mum passing, we took Mum to one of the charity/part publicly funded Hospices in North London (an amazing place) for an assessment and to see whether they would admit her.
What happened at that assessment was quite extraordinary. We were told that they had no bed space/beds to take Mum at the Hospice….and she was really in a bad way at that point. I was then informed that in Mum’s circumstances and condition that the NHS nurses at the Hospice would fasttrack Mum on to the NHS Continuing Care programme which meant that she would automatically become entitled to a place in a privately funded Care Home which would be paid for by the NHS /State.
Despite engaging with numerous medical professionals working privately and in the NHS for a period of about 20 months (following Mum’s diagnosis), not one of them had mentioned to me the existence of the NHS Continuing Care programme which is run by local NHS Health Care Commissioning Groups. There is a medical (not finances related) criteria that needs to be satisfied before the support will be granted but this support is not means tested and was free. A care home place in London now costs about £1200 per week ($1800 per week). It would have been really helpful if I had known about this earlier.
As with any carer, I am sure that my biggest concern in going through this experience was not knowing what was going to come next and how I/we were going to cope/deal with that. We are very fortunate in the UK in that we have the NHS. It would have been good, however, to have known about the NHS Continuing Care regime earlier.
Anyway….lots of love to all
Kevin x
One technical medical addendum I wish to make to my postings on here…..as I have just skimmed through them again. Mum had SIRT. For some on here SIRT has worked. For others, the experience has not been so good or quantifiable. My postings here indicate that Mum did not have a particularly beneficial experience with SIRT…but it caused her no harm and no side-effects. My brother has pointed out to me, however, that I have perhaps been too hard on the treatment. SIRT may have kept the primary tumour in the liver for Mum under control for much longer than we might have hoped and extended her life by several months. Her issues at the end were not liver related. This may have been helped by the SIRT treatment.
Mum’s main issue nearing the end was the bone mets and intermittent pain The key learning point if I wanted to share something with the community is to take very great care if/when the oncologists starts to bring palliative care doctors into the mix. Mum survived all the way through to July 2015 taking paracetamol for pain relief. Her downfall…as far as I am concerned….was with the need to take pain relief medication. Once we were trying different types of pain relief, this is when the major troubles started for us. The pain relief medication affects each and every individual in very different ways….so the key thing here is to make sure that you have 24 hour monitoring of the individual if and when diazepam or morphine (or any other side effect pain killers) are being introduced to help palliate bone mets pain. It is simply no good leaving this with the doctors (if the patient is at home) as it becomes really necessary to monitor the impact of the medication. I basically ended up altering Mum’s pain medication to keep her coherent and pain free/manageable. We apparently had one of the best palliative care doctors in the UK (Mum had private medical insurance) dishing out Mum’s pain medication….but it was if he didn’t have a clue in knowing how to get it right for Mum. So…my lasting comment is to take very great care if/when pain medication is introduced please.
Dear Lainy, Darla, Gavin,, Melinda, Catherine, Nancy and All,
Thank you so much for your beautiful kind words. I am sitting here sobbing again now
I am actually fine….just miss my Mum. She was my partner in crime, my inspiration, part motivator and kept me in check ….when it looked as though I was heading in the wrong direction. She was also a wise old (she would say a “young 72”) owl.
We had a family dinner on December 2 as it was Mum’s birthday. In looking back over the last 2 years….it was her remarkable bravery that stood out for all of us . She was just determined that she was not going to give up the fight. Frustrating at times….but it was the way that she decided she was going to deal with CC.
Bless her!
Lots of love to you all. A pic montage is hopefully attached.
Kevin
Dear All,
I am sorry that I have been absent from the forum for such a while.
My dearest mum, Maggie, passed away on September 11th after a 19 month valliant battle with CC.
I think we could have kept her going, but she just couldn’t handle the opiods…so that was the weak link for her.
She is now at peace. Thank goodness.
She was very much loved by many and took great comfort that I was engaged with so many of you on this wonderful website on her behalf.
Thank you to all of you who contribute to this amazing website. It is a wonderful resource. It was so helpful for me to be able to check out the experiences of others and to share ours with you. It was also so helpful to be able to check and test what Mum’s medical practitioners were telling us against others’ experiences.
This website and the contributions really empowered me in dealing with Mum’s condition as her frontline carer…and for that I will always be very grateful.
This was without doubt the most difficult thing I have had to go through in life. I am just very grateful that I had the time to do my best for my very loving Mum in dealing with this very vile disease.
Lots of love and thanks to you all
Kevin x
Dear All
Just updating on Mum.
We have had a bit of a rollercoaster over the last few months.
Mum was started on FOLFOX back in June…after having completed 11 Cycles of GEM/CIS. GEM/CIS was well tolerated.
FOLFOX was not so well tolerated and following two cycles was suspended by Mum’s oncologist. Main problem was tummy pains/some ascites. Not sure, however, whether the tummy pains were the chemo or the anti-sickness drugs.
Bone mets continue to wreak pain and we were fire fighting with radiotherapy. Then two weekends ago Mum woke up to such pain in her cervical vertebrae that we had to have her hospitalised. We thought she had fractured her neck or it was spinal cord compression. AN MRI confirmed it was just bone mets. She was discharged from hospital 3 days later with a new medication list, and a prescription for five fractions of radiotherapy to the cervical vertebrae area.
We followed the new pain medication list (which caused periodic wipe out for Mum) because it included diazepam provided by the hospital. A BIG MISTAKE. Mum then had a fall (solely related to the diazepam) trying to get herself out of bed and now has a fractured upper arm. She was hospitalised again last Monday and was discharged yesterday….hopefully they have now got the pain medication under control.
Biggest lesson here….which I actually believe was regrettably screwed up by Mum’s medical team on this occasion…is that when moving a patient onto a newer and stronger pain medication regime (previously she had managed with Paracetamol) and Naproxen), alarm bells need to be raised with both patient and carers to prevent against falls caused by intermittent drowsiness caused by Diazepam. So unfortunate. Mum did not need a broken arm as well!!
We are now moving into a situation where Mum will need a carer at home full time…. which I am organising. We will use the Hospice facilities and others when we need a break. My preference is to try to keep Mum at home. The Hospice is lovely but sterile…like a hospital.
Not very good news I am afraid.
For Mum’s pain medication she is on Pregabalin 75mg, morphine 10mg (slow release), Liqiuid oramorph (for bad period of pain), Naproxen and paracetamol
She is still getting up and around the flat (which I have kitted out with more disability aids)…but the fractured humerus has really knocked us for 6. Mum has to be helped to the toilet now.
Not great news to share…but I hope sharing the experience might be of benefit to others.
I don’t think I/we will be pushing for any further treatment now to prolong life. We will leave these decisions to the clinicians. My preference now is that Mum be made as comfortable as possible and as pain free as possible.
Kevin x
Dear Chuck’s daughter
Please pass on my best wishes and thoughts to your Dad. His posting on here helped me a so much with my Mum who has CC.
Please tell Duke that he was a real inspiration for me. He is such a fighter. Amazing!!
I would be very proud of him if he was my dad…though hopefully I can still be very proud of him for being his friend and contact on here.
Lots of love to him and my prayers are with him
Kevin
Dear Catherine/All
I am very pleased Catherine to see that you Mom is holding up well. I hope you have (are having) a lovely trip to Cape Cod.
Mum’s latest is that she is OK…ish. We had mixed scan results from her onc on June 2.
The onc is now going to take Mum off of GEM/CIS (she did 11 cycles of Gem/CIS in all) and move her onto FOLFOX to commence next week. I see from on here that FOLFOX has had mixed results for others ….so I suppose we just have to hope for the best!!
We took Mum along to the hospice/Day Care centre for an initial assessment/introduction. There were tears and it was difficult….but she said she might pop back to have her hair done and quite fancies the idea of some art therapy and seated yoga
. We will have to see. At least it is “accessible” now if we need it/she would like to go alongMy latest “difficulty” is that the lead onc (Mum has two-her lead onc and one for radiotherapy treatment) is now insisting that Mum consults with a specialized “palliative care doctor”. This is a “pain” doctor. Mum does not want to see a “pain” doctor until she has pain…which she does not have at the moment. She also sees the idea of a specialized “pain” doctor as acknowledging in part her demise (a bit like the hospice), so I suspect I am going to have a difficulty with her on this as well.
Anyway…at least Mum is still pretty pain/ache free. for the time being..which is a big blessing.
Lots of love and hugs to all on here
Kev x
Hi Gavin,
Well…I see what you mean
Your Dad certainly looked as though he was having fun there!!. Thanks for sharing…a really nice pic.I had a chat with the Day care centre triage nurse today…and they are going to let me have an outpatient appointment shortly for us all to go along for a visit. I will let you know how we get on. Perhaps Mum might love it….for a change…hope so!!
Mum is very happy today. Her blood levels have stabilised and her onc has put her back onto GEM/CIS for her chemo today at hospital. She was not happy when they took the Cisplatin away last week.
Anyway…off to the hospital shortly to pick her up.
All the best to you and your family
Kevin
Hi Gavin
Thank you so much for all of that detail on the Day Care centre and hospice that your Dad attended. It sounds as though he was having a party there with the massages and the food
I think we will need to give it a try…Mum included. I think I will start with the MacmIillan Nurse at Mum’s home and then we will try to gradually edge Mum along to the Centre. I have heard great things about some of these hospices and their day/other activities
I also think that your post touches on an important point (engaging with a community) that I was discussing with my brother over lunch today. Mum has not really mixed with anyone whilst having treatment over the last 14 months. That is because when she has had her chemo she has been in a private room in a private hospital. I am not sure that this is the best way for it to happen…and it might do Mum some good to be around other people having treatment etc. I can also see the downside here as well…perhaps it can be overwhelming to be with so many people in a similar situation. I am sure others will have their own strong thoughts on this!!
Anyway…I suppose a visit to a Centre for a few hours for Mum might be interesting…and then she can make up her own mind. If she doesn’t like it…that will be cool as well…and i am sure she will let us all know her preferences. It is perhaps good to try!!
Thanks again for the encouragement/support.
Best wishes
kevin
Hi Gavin and Marion
Thanks for getting back to me on my message. That all is all very helpful stuff.
Gavin-I agree with you on the potential benefits of Day Care centres. The problem is that we regrettably are still calling most of them hospices here. Mum (probably like many others here in the UK/elsewhere) still equate a hospice with somewhere that you go to die…so I can see that we will get some resistance/upset there….if mentioned to her. I think we will just say that a Community Nurse is coming to visit and gradually introduce it that way.
Your suggestion on engaging with a Day care centre (hospice) is timely, however, as Mum’s onc suggested exactly the same thing to me last week. They appear to offer nursing and help in the community/home and most importantly respite care if we cannot look after Mum at home…if she gets poorly. I am not going to turn that away…and I felt some relief in filling out the form for Mum’s GP to make the referral.
Marion-thank you for the technical/medical summary. Mum was transferred by her onc onto Gem alone last Thursday. Mum was distraught over “losing half her chemo treatment”. The onc’s explanation was that he wanted to temporarily suspend Cisplatin on the basis that Mum’s platelet count had been low. I can see this is all a juggling act….which one has to leave to the onc. Carry on with a certain chemo…and you screw up the blood levels…and then you cannot have any chemo at all!!
Marion-one point I might differ with your summary is describing SIRT as “minimally invasive”. It is quite the contrary to my mind. It is the actual insertion of radioactive beads by catheter directly into the liver. SIRT is a “serious” procedure because of the risk of the radioactive SIRT balls flying off to other parts of the body where they can cause very harmful and painful ulceration. Thankfully, Mum’s SIRT procedure was all fine and we did not have SIRT balls going anywhere other than to the target…though it looks as though the procedure did not have much impact (on the liver tumour/mets) for Mum.
Anyway…as always it is really helpful to share thoughts and concerns and receive responses from the Community
Thank you and hugs
Kevin x
Dear Catherine and Duke,
It is good to hear from you.
Catherine-I read back through your feeds. I am really pleased for you and your Mum in that your Mum currently seems to be doing OK.
Duke-good to hear from you…as always. It is always helpful and reassuring to know when others have encountered similar issues. Thank you
We have had a TV BBC documentary on (adapted from a book/blog) called the “the C Word” last week. It has caused quite a stir of interest here. It is a one-off drama. A story of life, love and cancer based on Lisa Lynch’s candid book and blog about her experiences.
http://www.bbc.co.uk/iplayer/episode/b05tr05b/the-c-word
You can watch the programfor free on the BBC I player (for the next 20 days). The CC community might like to watch this…so I will leave a moderator to repost somewhere more prominent if they think appropriate..
It is strange how C interests people. Another TV presenter, Lynda bellingham, here in the UK had her book/blog published just before Xmas: “there is something I’ve been dying to tell you”. It was top of the Best seller list here for over 3 months.
All the very best to you both
Kevin x
Dear All,
I thought it might be helpful to provide a brief update on Mum and where we are.
The second opinion on reading the Foundation One test concurred with the first view. There was no genomic alteration/mutation where anything (medication or trial) that was available to help Mum. We were told this was a very surprising result.
As mentioned in my previous post, the SIRT treatment looks as though it has had no impact/effect for Mum. Mum had two separate SIRT treatments: one in November 2014 and one at the beginning of Feb 2015. First scans at the end of March 2015 showed the tumour and mets in the liver had unfortunately progressed. We need the next scans to take a conclusive view.
My key warning to those now who might be considering SIRT is to think very carefully about having this treatment. The problem with it is that there was a need for Mum to come off GEM/CIS to have the SIRT between October 2014 and March 2015. In Mum’s case GEM/CIS had been doing a good holding job (stable in the liver/shrinkage on the boney mets for over a 9 month period). The lack of chemo for 6 months whilst Mum tried for SIRT has allowed the CC to to regrettably flourish….both in the liver and the mets. Perhaps the vile CC is “now out of the bottle” and we will not be able to get it back in
The response to the boney mets developing has been for Mum to have local external beam radiotherapy….as she had a number of bumps appearing on her skull…and other aches and pains in other parts of the body….where the PET scan was also showing CC activity.
At the beginning of April Mum went back onto GEM/CIS chemo. We have had a couple of hiccups since then. On one chemo day her hemoglobin levels had dropped and she had to have a blood transfusion. Her blood was fine the following week. We have this week past had another drama. Mum was seeing some blood in her nasal mucus. I reported this to Mum’s onc by e-mail and he sent Mum into hospital for tests. Mum’s platelet count had dropped. She had a further two units of platelets and two units of blood on Thursday/Friday.
Mum’s blood had been fine/stable up to the point prior to having any radiotherapy. Here is perhaps another lesson/thought. Perhaps don’t be too demanding to get radiotherapy treatment. I think we may have pushed too hard for it in Jan-March 2015 and we may have now screwed up Mum’s bone marrow…ability to produce blood with stable levels. Anyway, we had the platelet scare this past week…Mum’s off week from chemo….so hopefully she will be able to have her chemo this coming week.
So we are just waiting now for the next scans to see whether GEM/CIS will once again tun the tide for Mum….
Mum is otherwise generally OK and in reasonably good spirits.
The latest thing we are thinking about is whether Mum speaking to a therapist might be useful. Mum’s thought is “what can they do or say…that might help in these circumstances?”
Anyway….I hope others have better news to report.
Hugs and best wishes to all
Kevin
Dear Lainy and Catherine
Thanks for your messages and good wishes.
Yes-we will carry on and hope for the best. I think I am out of “novelties” now for the moment…but let’s hope that something will come along.
All the very best to you both and your families
Best wishes
Kevin
Hi Duke
Good to hear from you
Thank you for those reassuring words. It is very helpful
I am also very much hoping that the re-test for you on April 6 will allow you to go onto the new trial at Cleveland Clinic.
I think one of the the most important decisions has just been made by Mum’s onc…and we did not really input into it or question it. That decision is that Mum goes back onto Gem/CIS. The impact of Gem/Cis for Mum was beginning to wane (apparent from the scans) by the end of Cycle 8 back in September 2014. The onc nonetheless still believes that there is more mileage in Mum going back onto GEM/CIS now. I hope he is right.
As Mum has still only had GEM/Cis as a chemo treatment, I assume that another type of chemo will be offered to her before we fall back onto a second line treatment like FOLFIRI plus bevacizmab (see this very recent published article)-mentioned at the last consultation:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4326145/
On the Foundation One Test result, the report only came back with two mutations contained in Mum’s tumour. Only one of those mutations “MYC amplification-equivocal” has clinical trials currently relating to it. I am following up on that now
I agree with your point on contacting others for second opinions. I am doing this now. As you said (something along the lines of anyway) in an earlier posting “no time to mess about…or feel one needs to be at the behest of being ultra polite” in these circumstances.
Anyway…hope you have a lovely day. It is raining in London.
Best wishes
Kevin
