Seeking guidance

[TheDrivenSnow]

This is my third cancer diagnosis, and this time it's terminal (my first and second primary diagnoses having been in 2016 and 2017, respectively).

I've no idea whether or not to take a risk and attend my MRI and CT scans scheduled at the hospital for next week, plus I have immunotherapy (pertuzumab and trastuzumab/Herceptin) plus denosumab/Prolia scheduled at the hospice this Friday, preceded by bloods at home the day-after-tomorrow, and portacath bloods and a consultation with my oncologist at the hospital in the first week of April.

I had irregular bloods at last reading, am immunosuppressed and have been admitted to hospital on an emergency basis three times over the past four months for prolonged periods, one of those times being for acute neutropaenic sepsis.

I also have asthma, which I control daily with a steroid inhaler (Fostair) and an SOS inhaler (Ventolin).

My 94-year-old mother lives with us, and I am her primary carer (on paper, though I can do precious little for her now, given my condition and the constant pain I try to manage on a daily basis, so my daughter usually steps in): she receives top-up care calls four times a day from two separate care companies, so the risk of infection being brought into our home is not insubstantial, although we have alerted the care staff and requested that they practise good hand hygiene and remain vigilant.

I am practising rigorous hand/body hygiene and distancing myself socially: I haven't really exited my home for anything other than medical appointments over the past seven months (since my third/terminal diagnosis) owing to extreme pain and immobility (and just generally feeling rather grotty), so remaining at home is not an issue for me. Deciding whether or not to attend peri-urgent medical appointments is a rather more difficult proposition: I haven't driven since last August, so I rely upon patient transport services to attend hospital appointments and upon volunteer drivers to attend hospice treatment sessions.

Systems don't seem to be equipped to address these surreal, unprecedented times.

I plan to call my cancer treatment ward later this morning, and I would be so very grateful for any guidance at all from forum members.

I wish each one of you safe and robust times ahead...

[Hidden]

I'm so sorry that I have no idea how to advise you I'd so love to be able to but don't feel qualified if only empathy and compassion could make your decisions for you! Stupid reply I know but wanted you to know how I feel for you and how I'd love to be able to help you, sending lots of love xx

[TheDrivenSnow in reply to Hidden]

You're very kind, Malmal, and I do appreciate your concern and affection. Reciprocated in full measure X X

[Hidden in reply to TheDrivenSnow]

There's a discussion going on called Corona Virus from Puppy Love? If you have the energy and time maybe you should look into it? xx

[LotusAFlower]

Here in the US it seems every facility is doing things differently. I recently got word that the cancer center will only allow the patient and the one person allowed to accompany them to be tested at the entry for fever / information about travel and exposure. I have some upcoming tests in a couple of weeks . I have blood draw and infusion in June as well as meeting with the surgeon for scheduling a surgery for the periosteum inflammation ongoing since last year. I wish I could stay away from hospitals altogether. It’s harder to maintain personal space of 6 feet . I’m not usually an anxious person but between this new MBC diagnosis , pain in my ribs , and under my right breast , new hip and leg pain .. worrying about COViD19 and keeping my daughter (33) a quadriplegic from a MVA in 2005 safe . I’m feeling the shock. I had to take her to a neurology appt last week and we did our best to maintain space .. keep hands clean and not touch anything / especially other people and faces . I live in a full house with grandchildren too. Thank goodness they are already homeschooled and won’t be bringing it home from school but they are active in scouts , dance and volunteering at the local zoo. I’m sorry you are dealing with this now. As if you don’t have enough on your mind. As you can tell I have no idea how to guide you. .. I hope you find the best solution that works for you and can spend more time finding peaceful moments and thoughts. Virtual hugs to you .. your mom and your daughter too.

[TheDrivenSnow in reply to LotusAFlower]

In the end, the decision was taken away from me, thankfully: my oncologist cancelled my scans (CT/MRI) as he didn't think potential exposure to pathogens was a good idea.

I know exactly what you mean when you say you are in shock: I think very many of us are. It's not getting any easier, either.

It will all sort itself out in the end. It has to. We just need to stick with it.

Thank you for trying to focus on my conundrum/s despite your own medical issues: you're very kind.

I hope very much that you are able to manage your pain and that you, your daughter and your grandchildren stay safe: it's such a worry, isn't it...

[Becca65]

Hey Driven, I have an appointment at my hospital tomorrow for a draining. I have ascites and getting drained means survival to me. I will be going in - they have not called me and told me not to. I will continue to have to be drained at least 1x up to 3x a week until I can travel to my nearest Cancer specific hospital (Roswell Park in Buffalo NY) about 4 hours from me. Basically I was trying to get that surgery scheduled when this Coronavirus stuff started shutting down my state. I will be emailing the dr there today to figure out how Roswell is handling this. If I were you and they hadn’t called me and told me not to come I would be going in to get my treatments. Wear a mask and take your own sanitizer with you and use it. I would think if hospice was concerned about you coming in they would have cancelled.

Good luck

Rebecca

[TheDrivenSnow in reply to Becca65]

Thank you, Rebecca. I stayed away in the end because my oncologist cancelled the scans. I did have treatment, though the venue was changed at the last minute: they've moved the entire chemo OPD operation to a different, less crowded facility.

I have so much protective equipment now: gloves, sanitiser, masks (but basic surgical ones, not the ones with a filter; still waiting for those to arrive).

How did your appointment go?

[Becca65 in reply to TheDrivenSnow]

It went okay, they are having trouble getting me to drain well because I now have so much scar tissue from all the previous paracentesis. The fluid also seems to be pocketed off by some sort of coagulation type membrane kind of thing that I can’t seem to remember the name of.

I am glad they have moved your treatments to a less congested location. I am sure that takes away a bit of the worry. My own dr’s nurse did a phone checkup on me yesterday. Is nice to feel like they actually care.

[TheDrivenSnow in reply to Becca65]

Yes, I have such immense respect for the medical profession. They put our lives before theirs in so many instances: the least we (as taxpayers) can do is to ensure that they're provided the proper protective equipment.

(I'm still slightly apprehensive about going out to receive treatment, but needs must.)

I hope the drainage procedure is more straightforward for you going forward.

[Red71]

I think Rebecca’s advice is good. Wear a good mask and carry your own sanitizer. I think you need those appointments and will not be well served by missing them. Talk to all of your care providers about what you can do to limit your exposure, whether that means having some of your care done at home or less frequent appointments or whatever they suggest. Safe traveling! Elaine

[TheDrivenSnow in reply to Red71]

Thank you, Elaine. The scans were cancelled by my oncologist so as to avoid exposure to pathogens. They are taking bloods at home whenever possible (although my portacath misbehaved, and there were two futile attempts over two days before they finally succeeded). Obviously, I cannot avoid treatment, so that remains in place, though at an alternative venue.

I hope you manage to stay safe!

[Roukaya]

Take care and Take Courage

Your blog makes us realise how precious life is

[TheDrivenSnow]

Kind, wise words...