Palliative treatment

Hi Bexx85  It isn't  a great position to be in but it's the hand that we have been dealt with and there is no escaping that. I had this conversation with my 23 year old daughter last night about making the best of what you have in life  as there is always someone else worse off. I was told there is a 30% chance of the chemo and pump  working but the cancer usually comes back after 6 months and requires more treatment. The immunotherapy has a 20% chance or working. As bad as it is I am grateful as we thought it was months at first which was very hard to deal with. All the best Minmax  

Hi All, an update on my partner. After my last post about immunotherapy he’s been really unwell. He ended up with what we think was viral gastroenteritis and pain medication withdrawal as a result of that. I managed to get him to the hospital after calling the chemo helpline, then 999 because I didn’t think I could get him into the car but I finally did and cancelled the ambulance. We had a very poor experience on what I believe is the dedicated ward for these such instances and quicker than a visit to A&E. I explained vomiting regularly, confusion and having not taken any pain medication due to sickness and we were left in a side room unattended for 4 hours whilst they waited on a Covid test before they could move him. There’s more to it all but they basically did nothing despite his agitated state so we left and came home because of how uncomfortable he was. Then the diarrhoea started, bear in mind this is 4 weeks after chemo stopped and he was supposed to be recovering ahead of immunotherapy starting the following week. I called the GP, who sent rapid response, they could only give fluids and came back twice the next day and again the day after, excellent service but the pain was still unresolved and he drifted in and out and was jumping like he had a nightmare every few minutes. I was terrified. I did manage to encourage some oral morphine into him and his GP did a house visit and it’s he who suspects the gastro. I cancelled all appointments to get his picc line out, bloods, first immunotherapy and changed the face to face pre immunotherapy to a telephone call few days later. They agreed he needed to recover before starting. Since then he’s still randomly being sick and in pain every day despite medications being increased. The only good thing to come of it all was the introduction to Fortisip drinks having previously despised foodlink.

2 weeks ago we met the oncologist and she said he needs to be better before starting and has now thrown radiotherapy into the mix. I had asked about this previously and she didn’t think it would be beneficial but said maybe 1 or 2 fractions (I think that’s what they are called) but now due to the pain and the delay in immunotherapy she thinks best course of action is 5 fractions. I think the tumour on his neck has grown and is causing more nerve pain. We always visit Cornwall for his birthday which is next week and he’s been adamant no treatment until after that so that’s what we are doing. He had his CT planning yesterday, mask made which was horrendous for him but he did so well. I thought they would cut holes for his mouth and nose but it’s over his entire head and down his shoulders but he’s determined to do it. So we start radiotherapy the day after we get back. I really hope it helps with the pain. 

Hi Elaine. Thank you for updating us heartbreaking though it must be for you. I hope you both keep things together till after your husbands birthday and that the RT relieves his pain. It’s a horrid situation to be in, clutching at what seems to be our if reach through no fault of your own. 
You’re in my thoughts….. hugs 

Thank you Dani,

The support we’ve had since all of this has been amazing. We now have a palliative care nurse, dietitian and the MacMillan support worker is referring me to a clinical psychologist. We thought we were doing ok but we need the help and greatly appreciate it in any form. Now we need a little sunshine for Cornwall but not too much and hopefully some time to recharge. Hope you are well xx

I’m good Elaine. Thank you for asking in the middle of what you are going through. To have that support is like somebody not only keeping your head above water but giving you some sunshine to swim in too. Look after yourself as well. 

Hi Elaine thank you for update sounds horrendous and you’ll feel helpless at the time. Glad now you’ve a great team around you with the dietician and MacMillan nurse. Good idea for yiu to see the clinician as well. 
will keep fingers  x for nicer weather in Cornwall for you. Re the mask you can try to fry them to cut eye holes in before radiotherapy  starts some trust wilL do that 

Hugs Hazel x

Hi Elaine,

It sounds like your poor husband has had such a tough time and it must be horrific for you too.

So sorry that he's still in so much pain , you can always speak to his team about alternative pain relief untill they get the one that at least takes the edge off( Fentanyl was only thing that helped  me but Oramorph or Oxicodone seem to work for most people).

I asked for both eyes and mouth to be cut out ( as Im claustrophobic) but my lips did suffer  swelled and burnt by the week 7 of Radiotherapy.

He can also ask to listen to his favourite radio station or take his own playlist on his mobile phone to help relax him.

Im sending you both all the best for your trip to Cornwall .

Best hopes for treatment on your return.

Debbie  

Turbulent few months to say the least. Kris had radiotherapy but that night and an awful pain flare that was after 1 of 5 fractions. He wasn’t fit to continue, they put him on dex and planned to retry making clear is was last attempt as you can’t start and stop radiotherapy. The radiotherapy did shrink the large tumour and he felt it a few times but it a weeks later but again another wall was hit. 3 immunotherapies cancelled because he’s been unwell which no one seems to know of it’s from stopping the dex, disease progression or recent change from pregagalin to gabapenti. This past week and a half he’s had unbearable pain. Has to call the district nurse to administer the just in case medication 3 times with yesterday being the worst day. 3 injections and at least 8 hours before he had any relief and then I had the agonising wait of him sleeping it off. Palliative care came and fitted a syringe driver which is scary. Today he is better, back on 4mg of dex ans seeing oncologist Thursday. Yesterday scared the both of us so much. I have so much more to say about this situation and how much they scared me yesterday but today he’s fighting back and the pain is under control. Still has driver on but l hopefully it will be off in a few days. 

I am so sorry to hear what you and Kris are going through. At least it sounds like the syringe driver is helping to get his pain under control. I hope he will be able to resume immunotherapy and that it works for him. Just sending love and very best wishes to you both.

• Hi Elaine,

So saddened to hear about Kris and the horrific time you’ve both had .

My Dad had a syringe driver fitted which made administrating pain relief so much faster and easier for him so I’m hoping this does the same for Kris.

I can only imagine how scary this has been for you both and like CatSW9 hope that he can continue with his treatment .

Sending you both a virtual hug , hope you have support for you both at this challanging and difficult time xx

Debbie x