Bowel cancer treatment and side effects

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WelshWife

Husband still waiting for plan.. -looking for advice

My husband was told he had cancer 25th of April. Right hemocolectomy 24th of May. He is now 6 weeks post op and after our local hospital received a second opinion from Swansea today he has been told it will be 4-6 weeks for him to be seen by the oncologist at a nearby hospital before he will start chemo / radiotherapy.

We have had months of waiting and the initial Reaction was that they couldn’t deal with my husbands case in North Wales. He has a 3cm secondary tumour near bladder / rectum. One surgeon suggested we present at A&E in Liverpool.

I am organising a private second opinion from the Christy in Manchester now, i feel this is a unacceptable wait and i worry that they actually won’t be able to do the treatment here in the end which will mean more waiting.

Feeling absolutely terrified and exhausted. Any experience of switching hospitals greatly appreciated. I now feel i have to start a complaint.

Baxter2

Gosh this does seem like a lengthy wait to see an oncologist and start treatment @WelshWife. I can't imagine how this feels for you both. I think a second opinion is always good but doesn't sound like you even have that first p/initial opinion and clear treatment plan yet. Rather than go the complaint route at this stage, I would recommend contacting the hospitals PALS (Patient advice and liaison service) for help. Ask them if they can do anything g to help this situation and be specific with your concerns and timelines. I've used them a few times for 'help' as opposed to 'complaint' and made that very clear and they've been really helpful. You should be able to find an email address on your hospitals website. Please let us know how things go if you can?

In the meantime, here's a huge virtual hug and lots of love being sent,

Karen 🌻🌻🌻🌻🌻

WelshWife

Thank you for your reply @Baxter2 , I will phone PALS today. :x::x::x:

Baxter2

Good morning @WelshWife

It's maybe also a good idea to put your concerns in writing via email and follow up with a call? Good luck!

Lots of love,

Karen 🌻🌻🌻🌻🌻

WelshWife

Great idea, thank you. :x::x::x:

Jane39

Hi @WelshWife
This sounds really exhausting for you both.
Great suggestion from Karen . The PALS team may really be able to help.

I do know in my area people are waiting at least 4 weeks to get a start date for chemotherapy. They have huge demand and such a backlog. Its a real concern.

Good luck with the appointment at Christies.
Take care,
Jane :x::x::x:

WelshWife

Thank you all, PALS contacted and second opinion request has been sent in. Hopefully we will get clarity over the next few days. Gwen :x::x::x:

Alanj

From my experience, time just rolls on and your playing a waiting game for the next step, it took me from Completion of Chemo in March to liver ablation coming in August as a timeline of treatment.They said it was due to caseloads and being referred backwards and forwards to Liverpool from YG bangor. Best of luck with PALS :x:

WelshWife

Thank you for replying @Alanj . They won’t refer Bow over to Manchester or Liverpool because it’s peritoneum spread so the referral route is Swansea. I am so sorry you have waited so long for your surgery date. Good luck with it next month. We are waiting to hear from Christie private and Glanclwyd. PALS just told us what the nurse already told us. :x::x:

WelshWife

Hi everyone, update for Bow. Hs finally has a treatment plan! In the end we went private to the Christie and the surgery agrees that hipec needs to be considered after chemotherapy. It hasn’t gone through their MDT yet though. In the meantime we met the new oncologist here today and he is starting Bow on chemoradiation for his second tumour and he will then go straight on to chemotherapy for three months. He’s agreed to apply for funding for hipec. So relieved to finally have a plan after so long of not knowing. Will have more details and questions for the forum after his planning meeting. :x::x::x::x:

Liz Blakelands

@WelshWife
So glad that you have finally got a treatment plan and have got access to the Christie (personally I think it is grossly unfair that you had to pay for a referral to the Christie). And real well done to you both for refusing to take no for an answer.
All the very best
Liz :x::x:

WelshWife

Thank you @Liz Blakelands , i agree its extremely hard to accept, when i have more energy i want to try and do something about it :x::x::x::x::x: